The Art of losing isn’t hard to master, so many things seem filled with the intent to be lost that their loss is no disaster.
Lose something every day. Accept the fluster of lost door keys, an hour badly spent. The art of losing isn’t hard to master. Then practice losing farther, losing faster: places, names, and where it was you meant to travel. None of these will bring disaster.
I lost my mother’s watch, and look! My last, or next-to-last of three loved houses went. The art of losing isn’t hard to master.
I lost two cities, lovely ones. And vaster, some realms I owned, two rivers, a continent. I miss them, but it wasn’t a disaster.
Even losing you (the joking voice a gesture I love) I shan’t have lied. It’s evident the art of losing’s not too hard to master. Though it may look like (write it!) like disaster.
As far back as I care to recall presently, I have been ‘lil girl, to grandmama at least. “Say your prayers ‘lil girl,” “Wash dem dishes lil girl, I don’t aim to play housekeeper all day.”
I was ‘lil girl before I began straightening the curly afro I sported in Elementary School. I was ‘lil girl when I discovered ‘lil boys who possessed parts that could replace my magical fingers. And, as you might have surmised, I am two and a half degrees later, still ‘lil girl.
I am not unique in this. That is, this is no pet name. It is not a name that is exclusive to me. All of my male cousins are ‘lil boy. Similarly, all of my female cousins are ‘lil girl. It is an ongoing joke between the lot of us, at least it was, until it wasn’t.
Yes, it was quite hysterical until we realized what it was. Grandma was only 76 years old when they brought her home. They- two patrons of Walmart who’d found her wondering around the parking lot, alone.
“But where is her car?” My mother asked, holding the front door ajar, clinging to it, to reality, normality.
“Why it must still be there,” the gentleman answered, “when we found her she only said she couldn’t remember where she was going. My wife,” he gestured towards the woman holding onto grandma’s arm, “asked for her ID and we, well, we thought it best to just get her home straightaway. “
“Yes, of course.” My mother forgot her shock and remembered her manners.
“My father had Alzheimer’s too” the woman whispered, with a wink.
My mother looked stunned. This, Alzheimer’s, hadn’t occurred to her. Grandma had been forgetting for years, but we all forgot, every now and then.
“Never mind what we thought.” The husband stuttered. Silencing his wife.
“Why yes,” The woman smiled at grandma. Patted her hand and relinquished her arm, “you just get yourself inside and get some rest.
Grandma walked obliviously through the door that was still holding onto Mama. Ma mouthed a “thank you” to the strangers, but stood in place.
I remember driving grandma’s car home from Walmart later that day, an old Mercedes Benz her deceased son bought her brand new over a decade ago. The car was one of her few cherished possessions, never mind how old it was now. She was a simple country girl, and 5 kids and countless years later, it made her feel as though she’d finally arrived.
Never mind how her son attained the car, or the dismal fact that the same streets that carried him would slurp him up and bury him in the cement. Be that as it was, she’d arrived. She’d finally arrived.
She’d bought hats in every color with the Mercedes Benz emblem imprinted boldly on them and she wore them over a crooked wig. Wore them to church to pray for her wayward son and wore them to the bank to deposit the checks his sins brought her.
A generation later, she would present one of the hats to my younger brother when he purchased his first car with stained money, it was a newer but similarly colored Mercedes Benz.
“Which one you want” she asked?
“Whichever grandma,” he answered with a chuckle as he tried on the black, white, and red hats, one after the other. “Well, if you really don’t mind, I think I like the red one best” he smiled.
“The red one then,” she laughed as she collected her remaining hats, the remnants of her youngest son, and tipped away with them slowly.
Grandma lives with my parents now, and every day she forgets. The loss of names seems trivial now, she’s lost larger things. She forgets to eat, to shower, and why she can’t drive that old Benz parked out in the grass beside our home. Even larger still, her siblings are dropping one by one, and she forgets them too.
“This says John Henry Ivory II” she reads the emboldened letters she’s memorized loudly. “Sunset: January twenty-fours,” she adds an s onto the number four and glares at it suspiciously. Then, “come read this ‘lil girl.”
I read her brother’s obituary aloud.
“Born in Fort Valley, Georgia.” She shakes her head at my recitation. “He was one of thirteen.” She nods affirmatively. “A farmer and a carpenter.” She nods slower this time. Leans back in the leather/cowhide chair that looks much too large for her. Stretches her right leg all the way out so that the joints in her knee can breathe.
“So how many left? Me, Ethel, Mary” she counts off her remaining siblings, one finger at a time.
I stop her. “Mary passed a few years back actually, Mary and Dot.”
“Dot,” she chuckles, “Dot prayed to pass. She didn’t wanna live past 80. Didn’t wanna smell ole age and suffer’in. Dot been pray’in that prayer for years, and God took her right in.” Grandma smiles.
As the story actually goes, Dot prayed to live at least until she was 80 after watching both of her parents die young- her mother to cancer, her father to himself. Grandma always tells the story this way, however, and these days it seems fair to let her tell it however she’d like.
“I’m not going to ask God to take me. I’m not ready for that. I wanna leave when God wants me to leave, and I might not be ready then.”
We laugh for a bit and by default circle around the deaths we’ve witnessed in our backwards family.
“You know how daddy died?”
“Drowned himself, in a bucket.” This too is wrong. Her father hung himself.
“I think you have that wrong,” I suggest softly. She shakes her head in dissent. Recalls his legs shaking on both sides of the bucket, “like an animal.”
I persist in trying to make her memory logical, “did he tie something around his neck first, perhaps?”
She gets up and limps to the kitchen. “You just stay right there, “she calls. She walks and her one bad knee follows as she scavenges the kitchen looking for an exemplar. She settles for a ceramic vase that is much too thin to house a human head.
She stands before me with the vase. “Now you don’t believe me.” She looks forlorn. “Dot could’ve told you,” she snaps. I smile, disheartened, we both know the trouble is Dot is gone. Long gone, gone like a runaway slave trekking north for freedoms he may or may not receive.
I think about Dot, John Henry the first and second, and my dearest grandmother, Essie Maude Harris. And I prayDot’s prayer for her. It felt like sorcery, it felt like empathy.
As I say the prayer, I know it will not save her, just as her prayers did not save those before her, but it feels right to say it anyway. It feels right that she should go dignified, like Dot, not kicking and screaming like her father, John Henry I, legs flailing “like an animal.”
The truth is she’s already kicking and screaming, in her own way.
“Stop, shhh” she insists. We stop our correspondence at once. It seems urgent.
“The baby is sleeping” she whispers, pushing her open palms down against the empty air as if to suppress the vibrations of our voices.
“What baby?” My mother asks.
Tipsy from our eggnog, we cackle at the question. We don’t have any babies, no babies live here.
“Now you know,” grandma throws both her hands up in the air in frustration; she’s through with us. My mother is the first to realize that in grandma’s mind, today, there is a baby. Ma strikes a deafening look in our direction and we hush up directly. Today, there is a baby.
Ma follows grandma on soft heels. Peeks her head into grandma’s bedroom. I peek over her shoulder. We don’t see much; just a cluttered room, a bed with stuffed blankets and TBN blasting from the television set.
Ma tiptoes over to the bed. Grandma’s chest rises and falls next to Ma’s lifeless wooden nutcracker. The two are wrapped tight underneath grandma’s quilt.
Today, grandma sees a baby, grandma hears a baby, we have a baby.
Sometimes our baby gets out of hand. This past Thanksgiving, we learned that Alzheimer’s often leads to paranoia. The thoughts in our baby’s head get all jumbled up and she loses sight of reality.
She’s starting to see things that don’t exist. There are men watching her in her bedroom, and she must escape them, but not without herself.
She grabs and relocates the things that remind her the most of herself; expensive jewels she inherited when she was a registered nurse to wealthy white people on Star Island, fancy church hats that were a little too nice to ever actually be worn.
We watch in disbelief. She ignores us until, “Grandma, come have a coke with me” I suggest. I pour her a can of coke. I pour the soda into a glass already filled with a shot of Jack. I don’t listen as I cut her a slice of store bought pie, but I know she is declaring her love for coke. An adoration that stems from her childhood when, “daddy used to us home colas from work.”
She sits at the dining room table and nibbles on the pie. Sips the coke contentedly. When she starts to scrunch up her face, I pour more coke into her glass. That settles it, softens the secret ingredient. She drinks happily, though she has never had a drink in her life. We come from a long line of Christians who serve apple cider as champagne, even at weddings.
“I used to make pies like this,” she says.
I tell her I remember. I don’t remind her that that was just last year, she’s only recently forgotten how to cook.
I pat her hand, “you used to make pies way better than this.”
Sometimes our baby is sweet as pie. I facetimed her from Orlando a little while ago. The concept of cellphones is entirely lost on her. She smashes numbers into the confounding device, holds it upside down, tilts her head to get a good look at me. Today, she doesn’t recognize me.
“Who’s this ‘lil girl?” She asks my mother who’s stumping around the kitchen throwing supper together. Ma doesn’t answer straight away.
I smile into the device, “it’s me grandma.”
“That’s Tiffy,” Ma yells from the kitchen. Grandma misses this, shrugs, “well, whoever she is, she really is a beautiful girl. Ain’t she Tracie?” She sits the obscure device down and wonders after my mother’s voice. Leaving me and the confounding device behind.
Sometimes our baby is rather wicked. My father recently purchased a parrot. The bird speaks Spanish, we speak English. He says “good morning” and “what cha doing” too loud while we are either still sleeping or too groggy to be proud of his expanding vocabulary. When we wake, we open his cage and he walks around on four frail toes as if he doesn’t even know flying is an option. His wings were clipped for so long, he doesn’t know they’ve grown back. He won’t bother to try them out. Grandma tiptoes around him, petrified.
When we put him back behind bars, she’s content, happy. She is bigger, stronger, and she wants him to know it. She pokes a spatula through the bars, taunts him with a smirk. I stop her and she laughs hysterically. “I beat him down earlier,” she tells me, “he took it though, like a lamb.”
My temper threatens to escape me, but instead of a harsh admonishment, tears come. “You can’t do that grandma,” I whisper.
She is still smirking at the caged bird. “I’m not a bad person,” she says, and I don’t know if she is speaking to me, the bird, or herself. But no, she is not a bad person.
The morning after is always difficult. Filled a combination of repressed rage and guilt. She walks into the living room where I am still lying on the sofa. Grandma moved into my room when I moved out, so I spend my vacations sleeping next to the bird on a sofa in the living room. I don’t mind, much.
“Morn’in ‘lil girl” She greets me sincerely.
My answers are short, my tone clipped. “Morning” I whisper back being cautious; careful not to make eye contact, lest she think we’re companions and take up the empty cowhide chair sitting across from me and my feathered friend.
“How’d ya sleep?” She’s trying to make small talk. She’s forgotten what she’d done, why I am angry with her. I, however, have the gift of remembering.
“Fine,” I mumble.
She tips over to the chair, unpeeling a brown banana. “What cha writing?”
I sigh, “a story.”
As she walks past, I am aware that she soiled herself in her sleep. I scrunch up my nose. Somehow this makes it easier to hate her.
“What’s your story about?”
“Nothing,” I reply as I close my notebook. And I suppose I too am a bit wicked. I could say I am regretfully wicked, and I am, but I doubt that changes things. Wicked, is, well wicked.
I pray Dot’s prayer for her, again. But this time, it isn’t for her really, this time I pray it for me, for us. I come from a long line of cowardly Christians, that is, people who ask Jesus to fix their problems in lieu of rectifying them themselves. So, I pay Dot’s prayer for my mother who is working nights to avoid having to fight with grandma about taking showers or hiding soiled pants. I pray Dot’s prayer for my father who is raising my mom’s mother while Ma’s avoiding her at work. I pray Dot’s prayer for me, so I can keep my mom and dad home, together, in love, together, as it has always been.
I pray Dot’s prayer as a clueless child would, but I am not clueless, nor am I a child, so I am not exactly sure what that makes me.
The morning after is always difficult. Filled with a combination of repressed rage and guilt.
I think of the God I used to know. I think of the baggage grandma has carried; a widower with five children, no formal education, no established relations- a homemaker for a mother and a father who murdered himself. The ceremonies she planned for the two children she buried. The two sons she has left fighting my mother for control of her estate, for what remains of her.
I think of the God she made me pray to as a little girl, and I imagine him bigger, stronger, prodding her feeble body with a stick. I wonder how it must feel to her, but mostly to him. If he swells with pride as she calls out to him, “the one who gives, and takes away.”
Grandma walks over towards the sofa. My mother suggests she kick her heels up in the leather chair across from the sofa instead. Tells her the chair sits up taller and thereby will be easier for her to maneuver her way out of later. The truth is, the sofa is fabric and the chair is leather. These days, grandma wets herself often and the leather chair is easier for Ma to clean.
I am visiting again. I have brought with me an old teddy bear my boyfriend gave me when we first began dating. He sprays the bear with his cologne and I carry the stuffed toy with me when I am away. The bear is sitting in the leather chair. Grandma picks him up and sits him on her knee.
“You take him with you everywhere you go?”
“Not everywhere,” I smile.
“What do you feed him?”
“He’s just a toy, grandma. I don’t feed him anything.”
She nods in consent, but continues bouncing the bear up and down on her knee. When I look up from my laptop, I see her whispering baby talk to the stuffed bear. Today, grandma sees a baby, grandma hears a baby, we have a baby.
Sometimes our baby wants to be an adult. This Saturday morning, our baby has decided that she wants to make her own breakfast. We’re proud, elated as we watch her limp around the kitchen. She must be feeling like old herself again.
I watch her rather intently, then I worry that she may feel my gaze on her. I turn my head and glance at her periodically through the corners of my eyes. Just yesterday, she retrieved an old candle from the trash and tried to microwave it as a snack. I am cautious, lest she make another blunder.
We worry that she may burn the house down, so my father shuts off the breakers when he is away. It never occurred to us that ostracizing her from typical daily functions would assist her mind in breaking itself down faster. She grabs the eggs from the refrigerator, then a pot.
“What kind of eggs are you making, grandma?”
“Scrambled,” she says.
I suggest the skillet that’s in the dishwasher instead of the pot. She thanks me and grabs the skillet. Sets it down on the stove.
We resume our correspondence momentarily. Mom is the first to realize that grandma’s disappeared. She saunters down the hall after her.
“What happened Mommy? I thought you were making yourself some eggs?”
“Well, I was gunna but then I figured I’d probably mess ‘em up. So, I left it alone.”
My mother pauses. “Well there’s nothing wrong with trying. You almost had it.” Mom walks back to the kitchen and makes our baby scrambled eggs, grits, and toast saturated in apricot jam.
In so many ways, we have failed, and continue to fail, our baby. There is something unnatural about begging your superior to shower, so we don’t. Yet, we stay far, far away from her when she doesn’t. We limit our visitors because we don’t know what kind of day she will have on any given day. I am not sure if we do this for her or for ourselves. We down play her mental ailments. Again, I am not sure if the shame is hers or ours.
It is difficult to process and deal with mental illness when you are an African American and a Christian. I only recently learned that grandma had a mental break in her early thirties, a hiccup that my mother dutifully kept secret from me and the remainder of our family. I too have suffered from metal complications: anxiety, depression, and the like. I recall revealing to my mother my obsession with self-harm when I was a teenager. I recall her telling me to pray more. To pray whenever I got the urge to slice razor blades into my flesh.
My mother is not the villain here. As an African American, mental illness is a weakness. A folly that befalls only those who are not strong enough to stare down their own demons. As a Christian, we are to believe that God will redeem us and save us from even the darkest parts of ourselves, so we kneel and we pray harder. Then, we wait. Some of us are still waiting.
There are two halves of my grandma. The half I knew and the half I know. The halve I knew, loved church. Not just on Sundays for a few hours in the morning. I am talking full blown, screaming and shouting, hooting and hollering from the noon to night, from dusk to dawn. Pentecostal church. The grandma I know, loves TBN, church tv. My new grandma loves her bed. She leaves it sparingly, mostly just for food. She and her food lie in her bulky Victorian bed and watch TBN from morning to noon, noon to night, dusk to dawn. Sometimes I try to convince her to leave the bed, to walk to the church next door with me. I hate church, but it is the one thing the grandma I knew loved. The grandma I know is always promising me tomorrow. She’ll go tomorrow. We’ll go tomorrow.
I wish so many things for grandma. Practical things that I fear are already beyond her reach. I wish the sun could shine on her. I wish she would lie in the wet sand on her flabby back and bask in the Florida heat. I wish she would imprint herself in the sand and stand in the ocean. It has only just occurred to me that I have never seen her at the beach.
I have seen her at church, at home. I thought I’d known her. We have traveled to family reunions, stood in the sun at funerals. I wonder if the halve I knew is even less than that, if perhaps it is only the halve I thought I knew. Because there must be something more to a person than family and faith. That cannot be the whole of a person, any person, can it? I fear the halve I knew is the only halve she ever knew. I fear she will die only knowing that small, tiny person.
Tiffany Knowles is a doctoral student at Murray State University. Tiffany studied creative writing at the University of Tampa and English Literature at Flagler College. She currently teaches Developmental English at Barry University. Tiffany resides in Florida where she assists in providing care to her grandmother who’s battling Alzheimers and Dementia.
A few weeks ago we were talking about how we became caregivers on the Facebook page. I was surprised by how many professional caregivers said they didn’t have a choice in the matter, it just happened. I was also surprised by how many parents and spouses said they chose to be caregivers when there was an unexpected healthcare emergency.
The biggest thing that stood out for me was how many of the people in our community have both provided paid care for work and unpaid care to a friend or family member.
So, how did you become a caregiver? Did you have a choice in the matter, or was it something you just had to do?
I became a caregiver when I realized no one else was going to be able to fill the need.
I taught full-time in a tenure-track teaching position at a prestigious university. As I prepared my dossier to go up for tenure, my dad called to tell me that he had been in the hospital. He had had a TIA or “mini” stroke, but was ok. Meanwhile, my mom’s Alzheimer’s was progressing faster than expected. A week later, was spring break at the university, so went “home” to see the folks. As I walked around their house and saw how poorly they were managing, I knew I had to make a difficult choice.
I walked away from my career and put my life “on hold” as it were to care for my folks. It was a choice, but it was also true that choosing not to help them was not an option.
Not a choice an obligation to the ones we love
I became a caregiver for my Mother out of choice. Plus it was also a necessity. I was the only family member in the area and just sort of “fell into” the job. It was never a “job” as I had promised Mom to take care of her. I was able to do so as I am disabled so was not working.
The Caregiver Space was such a huge support for me, I received so much encouragement and generalized help. The course the VA sent me through was also a huge help.
Since Mom’s passing, I have become a part time caregiver for my neighbor who had a paralyzing stroke. It is great to be able to help them as they were always there for me when I needed them.
I became a caregiver for my widowed Father 4 years ago when he was 91. Although I have 4 siblings… no one stepped up and he was not doing well on his own. I was checking on him daily but when we moved out of state for a couple of years we had no choice but to have him come with us… 4 yrs later he is still here. We have moved back to our home state.
Dementia is getting worse and it is a lot harder to care for him. He is getting combative. Everything has to be planned around his needs. My poor husband is really over it. He is retired now and we can not enjoy our retirement. We can not just go out for the day or take a spontaneous trip to see our grandchildren and my siblings still have not stepped up. He does not have a lot of money so hiring help is out of the question… we are paying a CNA to come 3 days a week to bathe him now as he has refused to bathe but says he already did.
I started caregiving in 2008. I went to work for a company that cared for folks with developmental disabilities. It is a rough field but managed stay for a year and a half. I decided to leave there when I realized my own physical capabilities. I was 57 at the time.
I started caring for mostly for my mom and my dad as his health declined. I made a major move to Colorado for them. My Dad passed away October 2013. I continue to care for my mom today. She is 84 and has physical
disabilities and so far I am able. We lived in my brother’s house and he took care of us. In July of 2014 he had medical issues going on and I cared for him too. He passed away in November 2015. He was the baby of our
family. After helping her settle things there, I moved my mom and I back to New Mexico. Closer to my daughter.
I think sometimes about how much I want to live my life but she would alone and where? I allow myself to feel the anger, resentments, try to stay positive and do for me what I can. I don’t have the answers. I have a couple good friends in similar situations that are good support. I get up every day and put one foot in front of the other. None of us knows what life brings so it’s best to enjoy something in each day. Life is an adventure.
Thanks for reading and reaching out.
I became a caregiver when my wife was diagnosed with Alzheimer’s.
There was no choice in the matter, I did what a husband is suppose to do.
I didn’t have a choice at being a caregiver. My sister was married with her own family. Since I was single, the duty fell on me to help my dad with mother and now, I take care of him.
In my paper (delivered at the Alzheimer’s Association and American Society on Aging) the topic of the “Moral Dilemma of Caregiving” is discussed. The ethical dilemma comes when the caregiver is forced to choose between 2 wrongs. For instance, giving up a source of income to become an unpaid, full-time caregiver.
For myself, caregiving meant moving to our new retirement home and bringing Mother with us, instead of putting her in an excellent facility where I had worked. I’m still paying for that decision in the lack that social support I have been able to nurture for myself in the new location.
Then Mother died, and my husband was given a terminal diagnosis. In the space of a year I had lost my jobs, proximity to family, my tribe, my Mother, as well as my identity as an esteemed organist and a geriatric social worker with credentials in assessment and national presentations. Gone. Now I lead hikes…and read emails on “caregiving”.
11 year ago my wife had a liver transplant, now we’re told she has cancer, plus heart problems. I didn’t ask to be a care giver, it just happened to me. Holding down a job and care giving.
Death made me a family caregiver twice. After my father died, my mother struggled, became unsafe, and I moved her to Rochester, Minnesota. My twin grandchldren’s parents died in separate car crashes, and the court appointed my husband and me as heir guardians. We did this for seven years.
In 2013 my husband’s aorta dissected and he had three emergency operations. During the third one, my husband suffered a spinal cord injury that paralyzed his legs. I’ve been his primary caregiver for nine years. Sometimes I think I need a caregiver myself.
When I got married I made a choice that I would always care for wife no matter what. Diabetes was newly diagnosed a month before our marriage. Over the years, the diabetes evolved into more and more issues (renal failure, kidney transplant, major stroke, breast cancer and finally seizures. Not once did I doubt my promise or commitment in the forty seven and a half years that we had together.
It was something I had to do. My husband’s Atypical Parkinsonism impairs him but not fully enough to warrant outside help…yet. However, driving, dispensing drugs, some grooming/dressing, use of cell phone, tv remote, and computer all require assistance. Add to that the daily, ‘where did I put this,’ (many times a day) AND, last but not least, vision impairment from coincidental right eye retinal vein occlusion and neurological effects if vision in ‘good’ eye
….and you get spousal caregiving.
I became a part time caregiver for my mother when she had a stroke in 2003, at that time I was working as a Licensed Vocational Nurse and would bring food to my parents and bathe my mother before I went to work during the week and then would go on weekends to care for her.
My father started having symptoms of Alzheimers disease a few years later and I became his caregiver as well. My father passed in 2010 and I moved my mom into my home and I was forced to resign from my job, as I could not find a qualified caregiver to stay with her while I worked.
That was 7 years ago, I continue to care for my mother and her health has continued to decline. This year she had a UTI in January and was in the hospital for a few days, I took her to her doctors office for a follow up appointment in February and she got the flu, she became dehydrated and was hospitalized. I opted for her to have a feeding tube, but the doctor had to do a Hiatal Hernia repair first, this was a major surgery for a 95 year old. She came home and a few days later developed a bowel obstruction which required another major abdominal surgery.
She is home now and slowly recovering, she has had some TIA’s which has left her combative and confused. I became a caregiver as my parents did not have long term care insurance and could not afford to hire quality caregivers. I had worked in a nursing home as a charge nurse and had decided that that was not an option for my parents.
I am fortunate that I have the training and knowledge to give my parents loving care in the home setting for many years. This has been a strain on every aspect of my life, my marriage my profession and my dream for further education. I am happy that I had the opportunity to provide the care to my parents, but hope and pray that my children do not have to do the same for me.
I became a caregiver when my husband became seriously ill. That was 20 years ago and his health has declined dramatically over time with many added health conditions. I continue to be his caregiver and will be forever.
I became a caregiver when my middle daughter, Amy, was born. She has a chromosome disorder that has affected her physically and developmentally. She is non verbal and functions like a 2-3 year old. Amy is 33years old and lives at home.
When Amy was 4 years old, my husband and I adopted Ashley. Ashley has cerebral palsy, is deaf and nonverbal. She functions like a 9-12 month old. Ashley is 28 years old and lives at home. As my husband and I get older, the caregiving is getting harder and really taking a toll on us. I love my girls with all my heart but it is definitely hard!
I had a choice to become my moms caregiver. It was either me or a home. I
chose me. She needs one on one care all day every day and the best way for
her to have that care , was for me to do it.
I was 23, had a five year old and a 2 month old. My mother was diagnosed with stage IV colon cancer, and her “husband” decided he didn’t want to clean up crap, and I was already an “expert”. Sadly, she passed away 2 months later, and her “husband” left before her funeral. Look ahead 30 years later, and it was my turn at stage II colon cancer, and my two girls were thrust into being my caregivers. My oldest had three little ones under 10, including a newborn. My hope is that the pattern doesn’t continue. But … if it does, I know my grand daughters will pull their sleeves up and take care of their mom, too. – Joyce
It just happened, my sister asked if I wanted to quit my job to take care of mom and I said yes. I had 5 great years with her before she passed. 😇 – Terry
I went to visit my mother after I graduated high school and her caregiver said “oh thank god you’re here” and left and never came back!! So I got thrown into the role and did it for 10 years!! – Koren
It happened but i am thankful because no one would’ve took as good of care of them as me. God bless the staff at their nursing home. – Stacey
Just happened as my grandmother got financially destroyed by her youngest child/son! Her place was so in ruins & she was fallin fast in her health dementia/alzheimer’s! Its been a constant uphill battle not only with having to redo her home, but taking care of her & her health! Its 6am to midnight daily! I agree, we are so tired, my wife is now by my side through this journey! Never give up! 😥☝🏽🙏🏽☝🏽❤️ – Duane
My 26 year old daughter requires 24/7 care now due to Muscular Dystrophy. She does have nurses, but I am also a care giver for her. I had to give up my career. I love her more than anything in the world – but I will be honest – I am tired. I am 63, went through breast cancer treatment two years ago. I can’t afford the medical coverage or the medications. I have about $8000 worth of dental work that needs to be done. I took care of both of my parents until they passed. I have taken care of everyone through the years and not having any brothers or sisters – I have no one to take care of me. Yep. I am tired. – Debi
I was 25 newly married and my mother was getting lost driving to the same job she had for 20 years. 3 years later I’m sitting here frustrated I can’t get the stupid railing together from her falling out of bed. She doesn’t even know I’m her daughter these days. – Shanna
It just happened for me, when my husband had an accident and lost his job and went into severe depression. Neither of us asked for it. We don’t really want it now, either, but we have learned to accept. We are some of the lucky ones, as we are doing things that we love. Hubby potters in his garden, and in his shed making things. I do some sewing, making things for family and others. But, oh my, the years have taken their toll. Hubby’s physical health has taken a battering, and my physical and mental health has too……after all the stress of having to make some very big decisions on my own, which was new to me. We are coming out the other side, not sure of what the future will be for us, yet. Hubby is nearly retiring age, but I do hope his mental health continues to improve. – June
It just happened, I was a friend and saw someone needed help. I think God puts people in our lives for many different reasons and this must be the reason I’m there. – Mary
In my case, it just happened. I’m blessed that I am able to stay full time with my dad which enables him to stay in his home. My mother is in a nursing home and we visit daily. – Marie
An old roommate suggested I try in home care and that was 3 years ago. Now I’m HCA certified working towards CNA. – Jean
My son was born with a rare genetic disease; and now he is 22 years old and he is living at home and I was awarded the privilege to be his full time caregiver. – Brenda
It just happened. My husband had 2 strokes one week apart. I wasn’t prepared. – Tanya
It just happened….although frustrating at times, I wouldn’t have it any other way. Blessed to still have all these moments with my mom. – Penny
At a early age I had to take care of my little brother ,then my great Grandma, just over the years I became a CNA and Caregiver. – Anna
My husband became a wounded veteran. Life happens. We don’t choose for illness, disability, or old age to remove ability to daily living activities. It just happened to all of us. – Mary
When I got married and spoke my vows “In sickness and in health for richer or poorer until death do us part”. It’s been 8 years since my Bill’s illness and 5.5 years since he passed away. I had no help and held down my full-time job in the process and I was his primary caregiver and I’d do it all over again if I had to. – Lucy
It just happened! I did work as a caregiver and companion for the elderly about 11 years ago. Here I am doing it for my husband, and soon my mother. – Donna
My daughter was fell ill five years and was undiagnosed two of the five years. We found she had a rare genetic syndrome. She was only 13-1/2 at the time. Normal child until then. Something came and took her in the night…it seems. Sad, we try all the time to help her come back to us. But it is as if she is missing and everyone called off looking for her because she is rare and in a league of her own. I must cry every single day. The amount of daily grief is almost unbearable. But even worse is knowing how much she has lost. How much she suffers. How very hopeless the future looks. We just keep moving forward and praying for answers. Praying for her to recover. Praying for her not to suffer. It’s not as if I can say she lead a long happy life…ugh. This is her story and she is my hero. I pray God gives me the strength to continue walking with her until we get back her life. – Faith
It just naturally happened and was such a blessing. It allowed me to have more time with my best friend. Even on the hardest days, it helped me grow. Then God chose him to go to heaven. This is much harder now not being one. – Christy
Just happened found out my son had muscular dystrophy at 5 but our lives changed most at 9 when he lost the ability to walk. And now he is 20 and full time care. But I wouldn’t change a thing. This world could not handle my boy on his feet the place would be on fire. His wheels keep him grounded. – Erika
Just happened when hubby got cancer and now terminal. Then Mom got sick, too, and lives with us. So I have two now. – Cathleen
It happened when my husband was diagnosed with Alzheimers 4 years ago. We don’t have any kids so I am the one who is here for him. – Lynne
It just happened when my husband’s dementia was diagnosed and got worse. I love him and would do anything for him “till death do us part”. – Jenny
Caregiving just happened. I was 12 when my mom had her first massive heart attack and open heart surgery. When I was 18 I became a live in caregiver for a lady and lived with her almost 7yrs. Afterwards I became a live in for another lady for almost 4yrs. I just went from one person to the next leaving no space between patients and began caring for another woman for 2 1/2 and am currently a live in since Jan for another lady. This just seems to be my life’s purpose. I’m not married and have no children just a long list of “lil old lady loves” and wouldn’t know what to do if my life didn’t revolve around caring for someone. – Cameo
Just happen this time, my mother-in-law had a stroke, we moved in with her to take care of her, she now is in stage 3-4 dementia. I have been a caregiver 3 other times in my life to family members. – Diane
It just happened slowly. My husband stated to decline and I was there. 20 years later I am still taking care of him and trying to work part time. Not how we pictured our “Golden Years”. – MaryBeth
It just happened, hubby had a stroke July 2015, I didn’t even think about it, it was a given that I would give up my career to care for him, no way was I putting him in a home, hospital. Staff and social worker said I was “MAD” but I married him in sickness and in health, till death do us part! It’s hard at times but love him with all my heart! – Pauline
Becoming a caregiver was a choice
My husband and I made the choice to take care of his mom. She passed this past Dec. We are now helping out with my mom. You just do what you know is the right thing to do! – Linda
I decided to care for my mom. It was a difficult process but it was the greatest gift I gave myself. – Leuqar
Both I chose to marry my husband in a wheelchair, I chose to be a foster mom to possible special needs child and is getting more complex days before his adoption where we commit to be his forever home. – Kirsten
I made the decision to marry my husband, my prince, my best friend. Knowing that I would have to take care of him. Never occurred to me how much work it would be. Some days I’m physically and mentally and spiritually drained. But I made my vow. – Stephanie
I decided! I gave up nursing school to be the voice and the grunt of the people! I am a helper and always will be! – Michelle
I was an only child, who cared for her parents as they aged, while working full time in a high stress career, managing three daughters and helping in their lives, and married to my hubby, who already had parkinson’s. my parents passed, 5 years apart, while my hubby’s health deteriorated. he had a triple bypass and ablation (MAZE) procedure; later, a deep brain stimulator, shoulder surgery, etc. i retired early, 3 1/2 years ago to care for him. he was no longer able to do his own meds (things kept getting missed or screwed up), and getting his own meals (even after i prepped them) was too much for him. since then, he’s been diagnosed with “mild to moderate” dementia, probably from his parkinson’s disease. that explains much of the losses we’ve seen in his abilities. so, it “just happened”, but this part was anticipated. some days i think his disease is killing me faster than it is him, but we just keep marching on. – Marilyn
I was blessed 21 years ago with the very house next door to the one I grew up in. My Dad, Mom,& Grandmother still lived there. My grandmother then needed round the clock care and I stepped in because I knew it was hard on my mom with her own health problems but she helped where she could. I took care of her to the day she died. I took on a job caring for a woman who was a bit difficult for anyone else but she took up to me real quick, she was 103 at the time and was my dearest friend, I adopted her as my grandma and we were 2 peas in a pod, she passed away right before Christmas last year at the age of 105, I miss her. Then my parents and sister needed more and more care as their health deteriorated, my sister passed away last year on 2/18/2016 which was my other sisters birthday and my dad passed away days later on 3/1/2016 which is my mom’s birthday, we were robbed by our neighbors while we were standing in the room with my dad as he passed, then my mother’s health had gotten so bad this last year I am on 24 hour care at her house, as hard as it is to watch her struggle with her copd among other respiratory issues, I know the end isn’t far, I wouldn’t leave her for the world, for in fact besides my husband and 4 kids, she is my world❤ – Genie
I’ve been a hospice nurse for 7 years in SC/NC. I relocated last summer to be near my parents in Connecticut. They are both in their 80’s in great health. With the work I’ve done for years, I understand too well that one event can change everything. I am positioning myself to be available as their needs progress. Although not officially yet, I am choosing to be a caregiver. ❤️ – Kristie
Something happened and I made a choice
Mom was in the beginning stages of dementia for nearly a year when dad got sick and died last year. I am one of 5 kids, but the only one who didn’t own a home – so I was “free” to move in with mom (if by “free” you mean able to break my lease, move further from my kids and fiancee, and arrange a transfer to another job!). But, once the house is sold, mom will be moving in with one of my sisters, so I will be free to resume my life…but close enough to help sis with mom. – Judi
My brother and sisters had spouses and children, I didn’t want them to have to go through worrying as much keeping as much normally as possible, it’s the best thing I could do for my family and I know as much heartache we share they appreciate my decision. – Sophia
It just happened, but I made the choice to take care of my Mom. I could have put her in assisted living years ago but decided to take care of her in our home instead. – Kathy
I was out of work and my neighbor needed help with all types of things. So I would go there and help her. I also helped her with her dog Snowy. Well she had passed away that’s when I decided to become a care giver and I also took her dog so he would still be loved. She wanted me to take care of her baby. Before she pasted I told her that I loved her and I was taking Snowy home. I still miss her so much and so does Snowy we have a new person next store he still cries. – Peggy
I decided to be my mom’s caregiver, but my husband developed pulmonary fibrosis and later had a lung transplant, so no decision there. – Lucy
For me it was something I never thought I would be able to do. But I got a job at a care home and found something that gives me so much fulfillment and purpose. Side benefits are lots of smiles hugs and love. – Lesley
My husband was a incomplete c5-6 quadriplegic when we met. It was something I accepted from the start. About 6 years into our relationship he fell and broke both of his legs losing most of his independence. With this came a lot of health issues. Then in 2015 I decided to be his mothers caregiver too, she had Colon Cancer. Sadly we lost her in Dec 2015. My husband passed away last month. Now I have to learn to care for myself. – Staci
My husband became ill, my wedding vows said in sickness and health till death do us part.. I had been an EMT and an MA so I chose to do it myself, I have no regrets he passed at home March 18, 2016. – Linda
I decided to be a Nurse as a career, and then my Mom was diagnosed with Alzheimer’s, so that both just happened and I made the choice to move from MA to FL to help care for her and my Dad and continue working. – Stacey
I cared for my grandmother, mother and part-time invalid husband (deceased). Later on, when I couldn’t find an office job, it was suggested I become a private caregiver. God made me for this, and I never looked back! Then disability took my career, and now my husband is my caregiver. I am blessed with a caring hubby, but I miss my job. – Sylvia
When a parent, spouse, or relative is diagnosed with Alzheimer’s, it can feel as if you’re starting an uncertain journey without any sort of roadmap. It’s a feeling that can persist even as the disease progresses. Often, caregivers look back during the later stages of Alzheimer’s and wish they’d taken earlier steps that would have made late-stage caregiving easier.
One particular area where this can crop up is music therapy for Alzheimer’s sufferers. In recent years, music therapy has been the subject of increased media attention and scientific research. There is now widespread anecdotal and data-driven evidence that music therapy is one of the most effective ways to reduce stress and improve the mood of Alzheimer’s sufferers, particularly those in the mid-to-late stages of the disease.
One of the biggest challenges to music therapy for Alzheimer’s patients is choosing the right music. That’s because the most effective music therapy programs use a patient’s favorite songs from their childhood, teenage years, and early adulthood. Even when late-stage Alzheimer’s has claimed other memories, the beat or hook of a once-familiar tune can dissipate stress, encourage cognitive activity, and transport sufferers back to the feeling of happier times.
If you are caring for a loved one with Alzheimer’s, it can be hard to find the right tunes for music therapy — especially if you start searching in the mid-to-late stages of the disease. By this point, it will likely be more difficult for your loved one to recall the artists and song titles they were most fond of growing up. More important, it will be harder for them to have the kind of conversations that make it easier to build a music therapy playlist.
If you have someone close to you who’s recently been diagnosed with Alzheimer’s, taking steps now could make it easier to care for your loved one in the later stages of their condition. To find the artists and songs your loved one responds best to, consider the following suggested steps and resources.
Start with Conversation and Research
The first place to start when researching a loved one’s childhood musical tastes is with conversation. Even if your loved one can’t remember all — or even most — of their favorite artists and songs from their early years, they will likely be able to remember a few that you can use as a launching off point.
It’s not necessary to have a single long and intensive conversation. In fact, it may depress your loved one to dwell on preparations for the progression of their illness. If this is the case, you may wish to have short conversations, or ask casually without bringing Alzheimer’s into the conversation. On the other hand, your loved one might enjoy the trip down memory lane, in which case you should feel free to mine their memories.
Once you’ve pinned down a few of their favorite songs and artists, you can turn to the internet for further research. These days, it’s easier than ever to explore a genre or decade of music. Whether you’re using links on Wikipedia, a music streaming service, an oldies satellite radio station, or a combination of all three, you can begin researching the sort of singers, bands, and songwriters that your loved one grew up listening to.
As a general rule, focus on the twenty-year period between your loved one’s fifth and twenty-fifth birthdays. Find out what kind of songs were on the radio at that time, and which artists were most closely associated with the ones your loved one enjoyed. You can use links between Wikipedia articles, suggested artists on streaming services, or whoever’s up next on the oldie station to make these connections.
See What Your Loved One Responds To
Once you’ve brainstormed a list of possible artists and songs, start putting playlists together to share with your loved one. Unless your loved one is invested in the project, don’t force him or her to sit down with headphones and a notepad. Instead, play the songs as background music while doing tasks together, during relaxing moments, or while driving in the car.
At this point, see how your loved one responds. If your loved one says they remember certain songs or certain artists, make a mental or physical note of which ones. If they seem to perk up at the sound of a particular tune, keep that song in mind for the future. If they’re humming along or bouncing their knee to the beat, that’s even better.
During these listening periods, you’ll start to get a better sense of which artists and genres your loved one connects with most. You can then start repeating this process, using the songs and artists your loved one likes to get a better sense of which other songs and artists they might be inclined toward. You can then go back to your research to brainstorm new songs to try out.
The more time you spend on this, the more you can become familiar with the music from your loved one’s earlier years. As you become better versed in the music of the time, you’ll be able to make smarter and more educated guesses about your loved one’s tastes. You might also find that you begin to develop a deeper bond with your loved one through this process, giving the two of you something to talk about that truly hits home.
Create Personalized Playlists for Music Therapy
Whether your list ends up getting narrowed down or dramatically expanded, you’ll soon be able to generate a full collection of songs for future music therapy. At this point, you can begin to put half-hour or hour-long playlists together, selecting the songs that you think will be most joyous or most calming for your loved one.
Of course, there’s no need to shelve this collection during the early stages of your loved one’s Alzheimer’s. If you’ve found that these songs have had a positive effect on your loved one, you should continue to play them and enjoy them together.
You may even wish to take more trips down memory lane. These days, it’s just as easy to research old radio shows or movies that your loved one may not have heard or seen for several years. While plot-driven narratives are hard to follow for mid-stage and late-stage Alzheimer’s sufferers, reliving these memories can be invaluable for those in Alzheimer’s early stages.
When the Time Comes, You’ll Be Ready
By doing this kind of legwork during the early stages of Alzheimer’s, it is easier to provide music therapy for a loved one when they reach mid-stage or late-stage Alzheimer’s. While this can be an extraordinarily difficult time for you and your loved one alike, it can be made easier if you’re able to provide your loved one with moments where he or she feels comfortable and at peace with the world.
At this time, it’s important to make sure that your loved one is comfortable when listening to his or her music. Consider investing in a padded pair of over-ear headphones, which can make it easier for your loved one to focus on his or her music. Also, remember that music played at loud volumes can be stressful or disorienting for those suffering from memory disorders. Make sure to test the volume of the music before playing it for your loved one and try turning it down if the volume seems to agitate him or her.
In addition to music therapy, there are a number of other therapeutic activities and exercises for those with Alzheimer’s. More and more Alzheimer’s caregivers are integrating art therapy and nature therapy into the care they provide for Alzheimer’s sufferers. These therapies — either in conjunction with music therapy or on their own — may also help you in caring for your loved one.
Larry Meigs, President & CEO of Visiting Angels
Visiting Angels is America’s choice in home care. Since 1998, Visiting Angels locations across the country have been helping elderly and disabled individuals by providing care and support in the comfort of home. In addition to senior home care and adult care, Visiting Angels provides dementia care and Alzheimer’s care for individuals suffering from memory disorders. There are now more than five hundred Visiting Angels locations nationwide.
Florence Marquez liked to describe herself as a cannery worker, even though she was best known in her heavily Latino East San Jose neighborhood as a community activist.
She strode alongside Cesar Chavez in the farmworker movement during the 1960s and 70s. She helped build affordable housing for poor families near her local church.
But eight years ago, Florence, now 86, couldn’t find her way to the house she had lived in for 50 years. “That’s when we knew she needed 24-hour care,” said her oldest daughter, Barbara Marquez, 61.
Florence was diagnosed with Alzheimer’s disease, which robbed her of her memory and her fierce independence. Across the United States, stories like hers are becoming more common, particularly among Latinos — the fastest growing minority in the country.
With no cure in sight, the number of U.S. Latinos with Alzheimer’s is expected rise by more than eight times by 2060, to 3.5 million, according to a report by the USC Edward R. Roybal Institute on Aging and the Latinos Against Alzheimer’s network.
Advanced age is the leading risk factor for Alzheimer’s disease and the likelihood of developing Alzheimer’s doubles about every five years after age 65. As a group, Latinos are at least 50 percent more likely than whites to have Alzheimer’s, in part because they tend to live longer, the report notes.
“This is an incoming tsunami,” said Dr. William Vega, one of the report’s authors and the Roybal Institute’s executive director. “If we don’t find breakthrough medication, we are going to be facing a terrible financial crisis.”
That tidal wave of Alzheimer’s cases is prompting some tough conversations in Latino families, who often pride themselves on caring for elders at home, rather than placing them in nursing homes.
Those talks come with a lot of guilt, Barbara said. Until recently, Barbara was her mother’s primary caregiver. Her sister and brother helped out.
“But it was more than I could have anticipated,” Barbara said, recalling sleepless nights as she tried to make sure Florence didn’t get up and wander off. “It impacts your health, it impacts your marriage. So we looked for help.”
About 1.8 million Latino families nationwide care for someone with Alzheimer’s and other types of dementia. And while the Roybal report shows that Latino families are less likely than whites to use formal care services, such as nursing home care, institutionalized care is becoming more common among these families.
That can be costly. Nationwide, the average cost for basic services in an assisted living facility is $43,200 per year, according to the Alzheimer’s Association. Yearly nursing home care now averages more than twice that, at slightly more than $92,000.
For many Latino families, getting outside help isn’t an option. It’s often too expensive for seniors who aren’t eligible for Medi-Cal, California’s version of the Medicaid program for low-income people, which generally pays for nursing home care. Immigrants who are in the country unlawfully do not qualify for it, nor do people whose incomes are too high.
Florence’s children decided to take their mother out of her house in San Jose, and they brought her to live with her daughter Barbara in Fair Oaks, just outside Sacramento. They sold the San Jose house, thinking it would help pay for institutionalized care should their mom need it down the road.
She did not qualify for Medi-Cal, so she lived with Barbara for about three years. But after trying out a senior day care program outside of the house at a cost of about $78 a day, Barbara and her family placed Florence in a senior home in the Sacramento suburb of Carmichael, where she has been living for the past year.
The decision to institutionalize Florence Marquez left her children feeling both guilty and overwhelmed by the steep expense. Her care now costs $3,000 to $4,000 per month, they said. They pay extra for specialized services.
They had the proceeds from the sale of Florence’s house, “but those resources are dwindling,” Barbara said. “What do we do when that money is gone?”
The Roybal study estimates that the cumulative economic impact of Alzheimer’s among Latinos will hit $2.35 trillion by 2060. That figure includes the costs of medical and long-term care, as well as the lost earnings of family members who provide unpaid in-home care, and of the Alzheimer’s victims themselves, according to the study.
Gustavo Lopez of Chicago cares for his mother, Agustina Lopez, 76, who was diagnosed with Alzheimer’s disease seven years ago.
Gustavo, 48, and his four siblings looked into assisted living but couldn’t afford it. Agustina, after moving between her children’s homes, eventually landed with Gustavo, her youngest.
When Gustavo first took on the role of primary caregiver, his mother still did most things on her own, he said. But she now relies on him to help her eat, bathe, dress and take her medication.
So Gustavo needs a job with flexible hours. He’s worked mostly as a waiter. Other employment opportunities have come his way, some with better pay, but caring for his mother comes first, he said.
Asking For Help
Gustavo does get some help from family friends who check in on his mom while he is at work. He also found Casa Cultural in Chicago, a social service agency that offers a day program for seniors. He can drop his mom off at the center for a few hours, giving him a respite.
The alliance, formed in 2009, focuses on family members who are primary caregivers. Mizis said she has met many caregivers who are near their breaking point. The nonprofit offers training for them, helps find resources to boost their own well-being and puts on community events for families.
When seeking support, the best place to start is at a local community group or center — a church, a nonprofit, a United Way office, or the local Alzheimer’s Association chapter, for example, Mizis said. These groups will most likely refer caregivers to a county’s Agency on Aging or a state’s Department of Aging.
There, families are assigned a social worker who can discuss what benefits are available. If an Alzheimer’s patient qualifies for Medicaid, these benefits could include caregiver training and payment through programs such as California’s In-Home Supportive Services. But benefits and eligibility vary by state.
In 2010, the Social Security Administration recognized early-onset Alzheimer’s as a medical condition eligible for disability income. That could help people whose Alzheimer’s disease is diagnosed before the age of 65, but many Latino families aren’t aware the program exists, Mizis said.
A Push For Awareness
Because Latinos are more likely to use informal and more affordable care options, the Roybal report calls for improving training and resources for families in both English and Spanish.
Among the caregivers who opt to keep a parent with Alzheimer’s at home is Julia Garcia, of Houston, Texas. She rotates with her three daughters to watch her mother, Marcela Barberena, 85, who was diagnosed with the disease last year.
Julia, who had been unfamiliar with Alzheimer’s, initially thought her mother’s forgetfulness and childlike behavior was due to age.
“Too often people will see Alzheimer’s as a result of old age, but this brain-deteriorating disease is not natural,” said Vega, co-author of the report.
Julia Garcia said she realized it was something more serious when her mother took a shuttle bus from Houston’s international airport without knowing her destination.
“We had agreed I’d pick her up, but she left on her own,” Julia said. “She ended up downtown. It was the scariest moment of my life.”
As a new caregiver, Julia reached out to her local Alzheimer’s Association chapter for information. While some resources are available in Spanish in the Houston chapter, Julia noticed very few Latinos attending the informational workshops or classes.
Spanish-language media provided little information about the disease. “You rarely hear anything about it on TV or the radio,” she said.
In addition, many Latinos, including the Marquez, Lopez and Garcia families, are often unaware of clinical trials through which families can gain access to experimental therapies and medications at little or no cost.
Latinos are underrepresented in clinical trials sponsored by the National Institutes of Health: They account for 17 percent of the U.S. population but only 7.5 percent of participants at the 32 NIH-funded Alzheimer’s research centers across the country, according to the Roybal study.
Latino volunteers for these trials are important in helping researchers develop Alzheimer’s treatments that work for all ethnic groups, the report says.
“This is why it is so important to invest in the education of these communities,” Mizis said.
Her group helps train promotoras, or community health educators, in regions with large Latino communities — including San Francisco, Los Angeles, Baltimore and New York. Going door-to-door, promotoras educate families about the disease.
“I see firsthand everyday how much help our communities need,” Mizis said. “And this need keeps growing.”
I’ve once found my mother-in-law reaching for a slice of cake from our garbage can, as she was leaving the yard to go for a walk. Luckily, I was there to stop her from actually eating it and helped her get back inside. When I asked her why she would take that cake, she looked at me with a heavenly smile on her face, a smile much like those honest, angelic faces our kids make, and said “I was in the mood for something sweet, and you always make the best cake”. She didn’t know better and my heart tore right there and then.
A year and a half prior, she was diagnosed with progressive Alzheimer’s.
The street we live on is a cozy little space with no more than twenty houses; we’ve been there for our weddings and funerals, our kids crying for the first time and starting school. We’ve been holding each other’s hands in divorce, affairs, family tragedies and happy endings. In essence, life on our street is filled with love, laughter, secrets, gossips and friendship – everything about living here is colorful, perplexed and lifelike – just as we all are. And, after all these years, we are no longer just neighbors – we are family, with each other in sickness and in health. In a situation like mine, that helps a lot.
What is Alzheimer’s?
Alzheimer’s is the most common form of dementia, causing problems with memory, thinking and behavior. Alzheimer’s causes a memory loss so severe that it disrupts most people’s intellectual abilities, interfering with their daily life. The disease accounts for 60 to 80 percent of dementia cases. Alzheimer’s isn’t a normal consequence of aging, although it is most commonly linked with the elderly. Symptoms usually develop slowly and get worse over time, and currently – there’s no cure, even though research is ongoing.
A caregiver’s responsibility
With hospital stays getting shorter, more care is needed at home. While medication may help a little, every other form of caregiving boils down to having a lot of patience, love, understanding (of both the disease and the person having it), rationalizing the problem and being straightforward about it.
In our community, women are the traditional caregivers for both children and the elderly, so it’s important for women who take up this role to rationally approach it in order to find balance.
A year and a half ago, my mother-in-law came to live with us due to her diagnosis; at first, her state wasn’t as difficult to bear, but, in time, it started getting worse and we had to regroup. She joined our family, consisting of her son and me (we’re both employed full-time) and our two kids, her grandkids.
A novelty to all of us at the house, ALZ wasn’t really something we had ever dealt with. At first, it was all a game of guess-and-score but we’ve gradually managed to find a system that works, fortunately.
If you have an ALZ situation at home, here are a few things that may help you get more organized and lead a quality, undisrupted life (as much as possible):
Know your “enemy”
The first step to knowing what to do, how to act, and what measures of help to rely on is to gather as much information as possible about the affected person’s diagnosis, and make sure you are an integral part of their care and education team. If you are doing research online, be cautious; limit your online research to truly reputable websites and don’t trust everything you read. Ask the MD for recommended sites and reading material, and talk to them about the severity of, in my case, the in-law’s state. Apart from general reading, your MD is the best person to talk to about this condition.
Understand that it’s draining
Since you cannot change the circumstance you are in, change your attitude towards the problem; at first, it’ll seem like your whole world has crumbled and that you’ll never get back up. Stretched between my mother-in-law, the kids and their needs, my husband and myself, every new day at the house felt like dying. However, I didn’t – the situation has only made me stronger and had me think harder of ways to make things easier for myself.
To live through this – please understand everything about caring for a person with ALZ is very emotionally draining, as it is physically and mentally. You’ll be triggered often and on the verge of breaking, but accepting the situation is challenging will make things easier.
One of the unwritten rules of suburbia is to be there for the neighbors when you need them (and vice versa) – whether it’s in the middle of the day or night. You can call in a state of an emergency, and they’ll rush to your house with their uncombed hair and their unmade faces, in their pajamas and slippers. They’ll come and help, and that’s what matters.
Tell a few people from your neighborhood (or everyone, depending how tight you are) of your situation and ask them to help when they can. They can sometimes help sit in when you are at work, help the ALZ person find their way home if they get lost, or just be around the person with dementia so there are always familiar faces around. A person who has a dementia problem may start panicking and get scared when they are surrounded by faces they don’t recognize, so relying on people you can trust is (almost) crucial.
Talk to your children
Even without being told the facts, children will often be aware of difficult atmospheres and tensions. To avoid confusion and to make things slightly easier for everyone, talk to your children about the situation and explain what’s going on.
While you don’t have to use medical terms or get into intense elaborations, it can be reassuring for them to understand what the problem is. That way, they’ll not only be able to help, but they’ll also get an education on the disease. Further, the more they understand the situation, the more love, patience and effort they’ll invest into the relationship with the affected person. Additionally, with the kids realizing their grandparent’s behavior is a part of an illness, they’ll feel a relief knowing it’s not directed at them.
Talk to your boss
With a problematic situation at home, it won’t be a surprise if your focus and commitment at work decrease. Before you get into trouble, talk to your superiors about the position you are in. See if there is a possibility of cutting hours or an extra day off. Also, if your job entails changing shifts often, ask your boss to fix one shift you’ll be working in. That way you’ll be able to set a schedule that will be beneficial for further organizing all the chores at home.
My personal advice is not to ask to work from home, because you’ll go nuts; focusing all of your energy on the problem and having it in front of you 24/7 will additionally drain you. Going to work will be a stress relief (as much as possible), as it a change of scenery and circumstance.
Ask your spouse to help, regardless of whose parent is affected. It is not up to you to have the entire burden on your back. If your kids are grown up and responsible enough, ask them to help, too – they can go for a walk with their grandparent, read to them, watch their favorite shows together, take them to their friends’ house – anything that will instill the diseased with pleasant emotions.
Mind the tone
It is very important for everyone at the house to understand that ALZ isn’t a form of planned behavior, but a sickness. To a healthy person, repeating one and the same sentence or question may be very frustrating, leading to stress and rude behavior.
Everyone in your family should agree not to raise their voice at the affected person or harm their dignity in any way; telling them they are stupid, crazy and annoying, mocking them or refusing to answer their questions (even if they’ve asked it a millionth time that day), you’ll be hurting them more than the disease does. Watch your tone and behavior, please.
If it gets impossible to be the primary caregiver, hire help. Even, if your budget allows it from the get go, see to hire trained help that will aid in this situation. A person can come two or three times a week and provide any assistance your affected ALZ person needs. With amazing home care in San Francisco, my family has managed to work things out (as much as it can).
Consider a tracking device
There is a very arguable morality behind even suggesting something like this, but it’s very effective. If your affected person’s dementia is getting out of control and they are losing focus, leaving the house in the middle of the night, wandering around the neighborhood or hiding around the house or elsewhere, putting a tracking device on them (much like those you’d put on a pet), is very helpful.
Sleep, try physical activity or yoga for de-stressing, look not to miss pampering sessions or any type of soul food you’ve enjoyed – movies, galleries, theatre. Seek to see your friends often outside the house and talk of things other than ALZ. Eat your favorite food and enjoy it. Hug and kiss your kids as much as possible, they are the best therapy. Find solace in your husband, too. Join a support centre for people with ALZ (you can do this online or find one in your community) and share experiences with people going through the same. It is painful and unfair, the whole thing – but don’t forget to love yourself.
You didn’t ask for what’s happening, but you can deal with it, no doubt. Have faith in your strength and resilience, and be smart and organized with your game plan. You’ll get through it just as I have, I promise.
According to the National Alliance for Caregiving, nearly 20% of the U.S. adult population has taken on some form of family caregiver duties. Not only does full-time care demand time and resources, but it is evidently harmful to the health of the caregiver.
In fact, one study shows that healthcare costs for caregivers rise as their loved ones continue to decline. Even after the caregiving ends, the immune system can take up to three years to fully recover from the stress and strain of caring for a loved one.
Anyone who’s flown recently knows these familiar words: “In the case of a sudden descent, oxygen masks will fall from the overhead compartment. Please secure your own mask before helping others…”
With a little modification, this pre-flight advice may just save you from burning out: Before you care for others, please take care of yourself. If we’re going to be at our highest level, it’s critical that we take care of ourselves even as we care for our loved ones.
In this article, we want to briefly overview three essential ways to do just that.
1. Engage Family & Social Networks
As a full-time caregiver for elderly or disabled loved ones, you’ll want to tend towards isolation. After all, in home care can demand virtually all of your time, energy, and money. At the end of the day, the last thing you’ll be concerned with is keeping up your social life.
To combat this tendency, make it a point to reach out to family and friends. Additional support from your community will be crucial at every stage of this journey. Communicating with the outside world on a regular basis will keep you from becoming lonely and disconnected from the world.
2. Mind Your Own Health
As we saw above, caring for another can paradoxically take its toll on your wellbeing. One of your primary caregiver duties must be to preserve your own health first.
A nutritious, well-balanced diet will be crucial for keeping you in top condition. Regular exercise will not only boost your health but will help manage the heightened stress levels that come along with full-time care.
Naturally, adequate sleep will be vital to reducing caregiver stress and managing the physical demands of care. Be sure to check in with your primary care physician regularly as well.
3. Take Advantage of Specialized Support
There are more resources available to full-time caregivers today than ever before. Online, you can find information on everything from healthcare planning to end of life support. You can even join online community support groups to learn from others’ experiences.
You also need to connect with living, human beings in the real world. Websites like the Alzheimer’s Association provide listings of local support groups. You’re carrying a heavy burden. These groups will help you to connect with and be encouraged by people who know what you’re going through.
Finally, don’t be ashamed to take advantage of various respite care options. Whether you hire a nurse to come into the home for a break or you can make use of an adult day care center, respite care will provide you the break you need to regroup and take care of life’s everyday concerns.
Your caregiver duties will demand more than you ever knew you had to offer. Look after yourself along the way and be amazed at just how far your body will be able to sustain you as you care for your loved one.
It’s rare when there’s a gift that’s perfect for 99.9% of any group of people, especially one as diverse as caregivers. But there’s one gift nearly ever caregiver is hoping you’ll give them:
We’re hoping you’ll call and say:
You’re free this weekend and would love to keep an eye on mom.
You can take her to the doctor’s the next few appointments.
You’re running to the store and would be happy to pick up whatever I need.
You’re going to come mow the lawn this week, so what time works for me?
Those gifts are difficult to wrap, though. Here are our suggestions for something you can put under the tree.
From the relaxing to the irreverent, there’s quite a selection of adult coloring books to choose from. They’re a great way to relax, as well as keep care recipients entertained
There’s a wealth of information out there about caregiving written by people who’ve been there, done that. Just be sure your attempt to help doesn’t come across as criticism.
Inspiration and affirmations
We all have days when we need something to pick us up and keep us going. These books have real words of hope and motivation from other caregivers.
Time for introspection
Journaling is both a wonderful activity for caregivers of parents or grandparents and a way to wind down after a long day. Caregivers so often get wrapped up in putting one foot in front of the other that we lose sight of the big picture.
A great companion gift is the promise to help out for an hour or two every week to give them time to write.
Peace of mind
Caregiving is incredibly emotionally difficult. As someone who hasn’t been a caregiver, it can be difficult to understand, but that doesn’t mean you can’t be supportive. Pair a helpful book with plans to get together and just chat, as well as the offer to help them run an errand or two each week.
Caregiving can both strengthen and challenge relationships. Here are some tools to bring people together.
A good rest
It’s tough to get a good night of sleep with constant interruptions and so many things to worry about.
We’d love you to be there each day to give us a hand and some support, but there are other ways to let us know you’re thinking of us every day.
I’m generally not a fan of gift cards, as I either fail to actually use them or end up buying things I don’t really want. Gift cards to places you know they shop at — be it their favorite store or something practical like their local grocery store, pharmacy, Amazon, and Target. See if they’d like a cleaning company sent over once a month or a laundry service. See if they’d like to be signed up for a meal delivery service. Don’t just ask “what do you need?” ask if x, y, or z would be better for them.
If you don’t have the money, perhaps you have the time to help them run errands, keeping the care recipient comfortable for a few hours, or cleaning up the yard. Sure, maybe you’re not up for the hands-on part of family caregiving, but we all have those things on our list we just can’t get to. There’s the porch that needs a fresh coat of paint, the light fixture that needs to be replaced, and all those other chores that pile up. Lending a hand at the things you’re good at would be much appreciated.
Caring for a loved one suffering with Alzheimer’s disease can be highly rewarding, but it can also be overwhelming, especially in the beginning as you start to think about changes you’ll need to make in order to keep them safe. There are many details to keep in mind, but fortunately there are also several tips available on how to complete small or simple upgrades and repairs to your home that will ensure your loved one is healthy and happy.
The best way to start is to go from room to room in the home and write down potential hazards or changes you know you want to make. Here are some tips to get you started.
Because Alzheimer’s strikes the elderly, it’s a good idea to start by thinking about physical safety. The bathroom is one of the most dangerous places in the home for an older individual, so you might begin by acquiring a soft faucet cover, a shower chair and rail, and a non-slip mat. It’s also a good idea to check your hot water heater and make sure the temperature is normal, and remove the door locks or install a chain lock that will be easy to cut should you need to help them.
The kitchen can also be a dangerous place, but considering it’s one of the most popular gathering places in the home, it’s important to make sure it’s safe and comfortable. Chairs should have non-slip tabs on the bottom and there should be no loose rugs that could be tripped over. Consider buying a stove that has removable knobs, and always keep at least one fire extinguisher nearby.
Baby monitors are wonderful tools when caring for a loved one living with Alzheimer’s, especially if it is in advanced stages. Having a way for them to be heard should they need assistance is invaluable.
Curtains are preferable over blinds for the windows, as long cords can be safety hazards. Ensure that dressers and heavy furniture are anchored to the walls, and apply pieces of foam or other soft material to the legs of the bed to prevent injuries to toes.
Remove clutter from any walkways and make sure there are no trip hazards. It’s a good idea to consider whether your loved one might need precautions against wandering, such as motion-sensor alarms. Lock up any dangerous items, such as knives or weapons, and install childproof latches on drawers and cupboards that contain things your loved one shouldn’t have access to.
Keep all walkways well-lit and maintained. Night lights can be helpful in bathrooms and in the kitchen for nighttime use. If necessary, close off stairwells to keep your loved one from suffering falls.
Motion-sensor lights are a good idea for outside areas, especially if you have a pool or hot tub or if there is a lot of furniture that could cause a fall. Always keep pool areas covered and locked up, and put away all pool-related equipment after use.
Lock up any tools or machinery, and if you have a shed or detached garage make sure there is a sturdy door with a lock on it.
While these are all certainly great repairs to make for your loved one, it’s important that if you decide to make any of them yourself that you practice DIY safety. Wear the proper protective gear and make sure you know how to handle tools properly. And don’t be afraid to call on a professional when you need one.
Taking care of a loved one who is living with Alzheimer’s can be difficult at times, but it’s important to remember that safety is the number one priority. Making sure your loved one is comfortable and has their needs met will ensure they have healthy, happy days.
Caroline James is passionate about fighting for senior mental health and support. Caroline and her husband createdElder Action after becoming caregivers for their aging parents, with the aim of providing useful information to aging seniors.
The caregiving community is incredibly diverse, but it seems we can agree that dementia caregivers — both family and professional caregivers — should be trained. Dementia caregiving is a world where the ‘normal’ rules don’t apply and we all need guidance learning to support, motivate, and keep people with dementia safe.
Family caregivers and professional caregivers both report that they wish they’d gotten training in dementia sooner and that it makes their lives easier — while helping them take better care of dementia patients.
Even at the assisted living facility where I’m a nurse, where I’d say the majority of my residents have dementia in some form, our aides have no idea how to handle it.
One resident consistently tries to “go home,” often packing up all her things, trying to get out the doors etc. The best way to calm her, I’ve found, is to tell her something to the effect of “the moving truck broke down and they won’t be able to fix it until tomorrow.” She accepts that and goes about her day.
So many times I’ve had to coach my aides because they try to prove to her that she lives at the facility, showing her name on her door and things. This only leads to her becoming agitated, then I have to medicate her because nothing will calm her down.
I like to explain it like this to my aides: imagine you’re finishing up your shift and someone tells you that you can’t leave, you live there and it’s time for you to get into bed. You know 100% that you don’t live there. When no one lets you leave you get mad, and scared, and you just want to get out of there–these people are keeping you in captivity. You’ve got to get home to your kids, go grocery shopping, and no one will let you go home. You haven’t worked here that long and now they’re telling you that you can never leave.
Because dementia patients can’t be “taught” out of their delusions. It just doesn’t work that way. So yeah, dementia training should be 100% mandatory. – Devon C.
Here’s what our community members have to say
The focus for many places, caregiving organizations, and doctors seems to be on what the dementia patients have lost ability to do. There is still so much they can do, respond to, which if we help facilitate will make the patients daily life meaningful. – Colleen H.
One of my mother’s caregivers from the agency was up all night arguing with my mother about whether there was a baby in the house. My mother asked “Where is the baby?” The ones that had training in dementia knew to answer with, “the baby is at your daughter’s house tonight so that you can rest.” – Barbara K.
I don’t think it’s a bad idea at all. My husband has Alzheimer’s/dementia and sometimes it is so hard for me to handle the cognitive /not cognitive moments with him. I try to just “go along” with those moments, but, it is very difficult. If there is a better way to handle it with proper training, sign me up! – Kathleen S.
I agree training would be great. Everyone doesn’t have the patience to deal with dementia/Alzheimers patients no matter how trained they are. They first need a heart to care and understand that this isn’t an easy job. – Quince J.
I’m caring for a grandparent and I was totally unprepared for the multiple bad episodes. Even her gerontologist isn’t much help. – Fern L.
There are times that you will wish you had training when they have a really bad episode. That training can make a big difference to their care and your approach. – Nicole K.
I’ve done all my own training on my own time with my own money because I adore these people and they deserve to be understood and their families deserve to know their being well taken care of. – Michelle W.
I used an agency to get a caregiver for my mom with Dementia, it was amazing how little they knew and were just trained on the cleaning part. I was training them and paying them hundreds of dollars…very sad. How do you help your client if you don’t understand their needs? I feel very bad for elderly that don’t have family around all the time to oversee the care they are receiving. – Terry F.
Caregivers who are inexperienced in this field leads to abuse because of the lack of understanding. And by abuse I mean unknowingly acting out towards the person with out intentionally meaning so. When a caregiver doesn’t understand and that caregiver starts to get caregiver breakdown, unintentional harm happens with out even realizing themselves they are doing it. I’ve personally have seen this happen way to many times. It’s a bad situation to both parties involved. – Kim S.
I hired caregivers to help with my Dad, and I was amazed at what they didn’t know about Dementia patients. I had to train them how to react, care for and converse with my Dad. – Patti K.
I take care of my Mum who has Alzheimer’s. I’m very glad I got trained in this area. It has been a stress saver. When I look at my Mum, I see the great honour I have been given to take care of her. – Melody F.
After what my nans going through on a so called dementia unit in a hospital, I think people need training. We have to go to the dementia unit and feed her everyday because they don’t have the patience. They have no idea at all. – Charlotte S.
Some comments have been edited for clarity and/or grammar.
We talk a lot about how rewarding and meaningful caregiving can be. Most of us would never trade our responsibilities, but that doesn’t mean caregiving isn’t the most difficult thing we’ve ever done.
Instead of trying to sugarcoat it, how about offering caregivers some real support?
I cared for my mom for 10.5 years after her stroke. She moved in with me when I was 29 and moved to an assisted living when I was 40. Now she is about to transition to a Nursing Home. So scary, because as many of you know, out country SUCKS at taking care of its citizens, but especially the elderly.
What many didn’t realize is that, although she hasn’t lived with me for two years, I still have to deal with the pads, the briefs, the meetings, the unanswered call lights, the endless phone calls (sometimes 50+ a day) because she is lonely.
It’s exhausting. It’s guilt ridden. It’s unforgiving. – Greta M.
You are so right, some days you feel like you cant even BREATHE! My dear mother in law has had Alzheimer’s over 17years already! My mother has had dementia over 3 years and we take care of her at home 24/7! The stress level among the siblings is through the roof! God Bless all caretakers its the hardest job in the world and unless you have lived it you have no clue. – Tammy B.
Everyone thought I would get a break when my Granny had to be admitted into the nursing home when she broke her shoulder. They called me numerous times daily and would ask when I would be there to sit with her because with her Alzheimer’s she was a handful for them. It was just as exhausting and I hated that she was there. – Chris M.
Caregiving has been my life for 4 years now…it is the worst. I lost my retirement, I’m losing my home, and frankly people are sick of hearing of my son and his illnesses. The worst question of all “when will he get better?” again, no, he won’t ever get better. – Paula P.
My husband has been battling head, neck, and lung cancer for 5 years. He gets his health care through the VA because his cancer was caused by Agent Orange. While we have no financial issues, the stress gets overwhelming just the same. His 3 kids have never offered to go to a doctors appointment with him, or stay with him to give me a break. Sometimes I just want to yell at someone. – Brenda I.
It’s all about attitude. You can either sit around woo-is-me-ing or you can find joy in little things and not be as miserable. I’ve been caring for my father with dementia for 7 years now. I’m 36, not married, living with my parents to do this, have no clue how I’ll survive or even work after all is said is done and children are now out of the question. Sometimes I succumb to the misery and have a good cry. But the next day, I list what I’m thankful for, even if it’s just coffee, my cats, or the weather; try to put everything back into God’s hands; and smile when dad says “good morning” or “I love you” back to me or my mom. – Susan F.
It’s all about how you spin the situation. I’ve been taking care of my husband for 1.5 years as we battle throat cancer. I’m no iron maiden, or super woman. I spend my days exhausted and often in tears. Caregiving does suck, but you’d best suck it up and get a handle your misplaced frustration. – Fiona S.
I took care of my mother for 20 years until she passed. While I was able to work, that was my only outside activity. It messed up my young adulthood and my adult life. I had no vacations during that time. My sibling hardly ever stepped up and helped out cause he lived a couple of hours from me. Like many caregivers I have diabetes and heart disease. It takes a large toll over time. Would I do it again…No, not in the manner I did it. I now have no children to help me out in my old age. I now advice people, take care of yourself FIRST. Seek balance and don’t make that sever of sacrifices! – Karen T.
I’ve been caring for both of my parents for over 21+ yrs. I’m tired of this. When My Dad Asked Me 21 YEARS ago to stop working to take care of them, I never thought it would be this hard. My mom is stage 3 Alzheimers and can’t walk due to her stroke and my father had leukemia.
I hate it when people ask if I need help to just give them a call only to come up with an excuse.
I even become angry when these so called caregiver experts giving advice when they themselves aren’t experience caregivers. Many of these so called experts always have the same excuse when I challenge their credentials as to call this number or person about their caregiver experience. Yet I’m grateful to the very few who contacted me saying that they have experience in taking care of a family member. – Bob H.
It’s not an easy road to travel. There are organizations that raise money for research, but none for caregiver assistance. There are many that offer help, but it comes with a hefty price tag. After several years of suffering from ALZ, my sweet Mother left this earth on Aug. 12. I was her caregiver during these years. I watched my Mom totally disappear and at the end, her family was with her as she drew her last breath. – Pamela M.
I’m my moms caregiver and its draining, my life isn’t what I had expected… but to not have her here with me and our family that would be more devastating. – Harper R.
Talking about how hard caregiving can be is not meant to make you feel bad. It’s just a hard place for caregivers. It doesn’t change that we love the people we support and want to be sure they’re ok! – Karen B.
It’s so hard because you feel guilt for wanting time alone but I’ve been doing this caregiving now for almost a year by myself after my father was killed, my mom had a stroke and is in a wheel chair and has no left leg control…she’s a total dependent. I am an only child, 35 and I am already burnt out.I have some help in the mornings so I can work, but all nights and weekends are on me and I am exhausted! – Lisa R.
Caregiving IS rewarding. And it can suck. At the same time. I’ve been caregiving to a family member for 18 years and helping a team of carers do the same and it can be inspiring and uplifting. The ingenuity and love and generosity of spirit of other caregivers inspires you. And the strength of spirit of the person being cared for, if you are lucky enough for that to be intact. But, yes, it is exhausting and at times you’re on your knees thinking “What can we do next that might be of use as so far I’ve done everything and I don’t think I’m helping.” All you can do is be there or make sure others are when you can’t be who are loving and generous of heart and… that’s about it, I guess. – Phil D.
It sucks. It’s draining. It’s tiring. It’s hard. It’s painful. It’s lonely. It takes someone special to do it. It’s what we do. We never stop. – Jeannine G.
It really does suck. It sucks your energy and your attitude. Some days, it sucks your sense of humor right out of you. But we keep on, caring for that loved one as best we can, given the rotten circumstances. – Gretchen M.
We have long term health care insurance that we can access for assistance, but here’s the thing. How to convince my sick husband we need a stranger in the house to help us out? Exactly when will he think it’s “time” to call them in? I work full time and teach at a law school one class a week. And get the house cleaned, dogs fed and groomed, lawn mowed and other landscaping done, etc. yet if I want any time to myself – a conference out of town – even a late dinner with a girlfriend – I get the passive aggressive guilt treatment. I have cancelled out of and left early from more obligations I’d like to think about. He refuses to see an end of life therapist and some of his family is somewhere on a barge on the River Denial. His illness is terminal, there is no more treatment available and things are just going to get worse. So I’m not feeling the “rewarding” part at all and I don’t think your attitude needs any sort of adjustment. Keep enough of you going so you can live and enjoy life after they are gone. – Melissa M.
This damn job is no fun, but yes, there are some funny moments. It’s also heartbreaking, nerve racking, anxiety filled, scary, worrisome, difficult…I could go on all night. No, it’s not rewarding, but my parents deserve the best I can give them and so much more. – Frank A.
Its a miserable existence! Pee and crap everywhere, wandering, literally being beat up, scratched and bit, just for trying to clean her up! My MIL hallucinates and talks crazy all the time. Disassembles every object in the house, and cannot be left alone for 5 minutes! – Vickie B.
I didn’t think it was gonna be this overwhelming and such a big life changer, but I’ll do anything for my 90 yr old Grandma. My reward is God letting me spend our days together. – Adriana E.
You lose your loved one, you lose yourself, you lose your family and friends. And you are unable to help your children and grandchildren. – Elsebeth P.
Some comments have been edited for clarity or grammar.
According to the report, “Latinos & Alzheimer’s Disease: New Numbers Behind the Crisis,” U.S. Latinos living with Alzheimer’s disease are projected to increase from 379,000 in 2012 to 1.1 million by 2030 and to 3.5 million by 2060 – a growth of 832 percent. In addition, the report released unprecedented findings on the cumulative direct and indirect costs of Alzheimer’s disease on the U.S. Latino community, including millions of family caregivers, which would ultimately cost the U.S. economy $373 billion by 2030 and $2.35 trillion (in 2012 dollars) by 2060.
“This timely report provides strong evidence of the rapidly escalating burden of Alzheimer’s disease on the U.S. Latino population,” said William Vega, co-author of the report and executive director of the USC Roybal Institute on Aging. “It is not only the growth of the prevalence that is concerning. It is also the very high metabolic syndrome and diabetes rates that are fueling the increase in Alzheimer’s to levels well beyond expected rates in the U.S. population.”
The report’s data sparks renewed urgency to address health care disparities affecting minorities, particularly U.S. Latinos. Because of advanced aged and socioeconomic determinants, U.S. Latinos are 50 percent more likely to get Alzheimer’s than non-Latino whites, yet are less likely to receive a diagnosis from a physician. Despite an increased prevalence for Alzheimer’s and other diseases, clinical trial participation among U.S. Latinos is extremely low at approximately one percent, punctuating the need for increased efforts to engage U.S. Latinos in clinical research.
As outlined in the report, the direct cost of Alzheimer’s includes expenditures for medical and long-term care, while indirect costs include unpaid informal care and earnings lost by people with Alzheimer’s disease. While U.S. Latinos are more likely to seek care options that are more affordable than non-Latino white Americans – for example, choosing adult day care vs. nursing home care – the total cost of Alzheimer’s on U.S. Latinos will still outpace the cost for non-Latino whites.
“Latinos living with Alzheimer’s disease rely more heavily on informal care than more expensive options like nursing home care,” said Shinyi Wu, co-author of the report and senior scientist at the USC Roybal Institute on Aging and an associate professor at the USC School of Social Work. “Due to demographic and family structure shifts among Latinos, there will be a lower ratio of younger generations able to take care of older generations living with Alzheimer’s, placing significant societal and economic stress on Latinos.”
“Caring for my mother with Alzheimer’s is draining, but I know that it is the most important job I’ve ever done,” said Daisy Duarte, a caregiver and advocate for the LatinosAgainstAlzheimer’s Network. “Every penny I earn goes to my mother’s care, and sometimes I feel like my dreams are slipping away. I have hope, but we need help, and we need a cure.”
A goal of the report is to make sure the nation is prepared to address these disparities. To that end, the authors outlined a host of solutions that need immediate action:
Increase research funding for Alzheimer’s to at least $2 billion annually, the level experts recommended in 2013 was the minimum needed to develop an effective treatment.
Collaborate with government, community, philanthropic, health and industry partners on developing and implementing culturally tailored community engagement and education efforts to promote Alzheimer’s and brain health literacy and early detection among individuals, families and community stakeholders.
Improve access to caregiver resources and informal training for caregivers in multiple languages.
Grow the enrollment of Latinos in clinical trials by developing recruitment strategies and trial designs that better reflect the demographic heterogeneity, social needs and economic realities of Latino communities, some of which have lower health literacy, trust concerns and difficulties finding transportation.
Recruit and train a more diverse health care provider workforce to address low diagnosis rates and improve treatment and care utilization of Latinos living with Alzheimer’s.
Advocate for federal- and state-based action plans and goals for eliminating disparities in Alzheimer’s diagnosis, care utilization and research participation rates.
“Latino families are increasingly in the crosshairs of this growing public health crisis and are among the least resourced to deal with the financial demand Alzheimer’s places on households and on family caregivers,” said Jason Resendez, a co-author of the report and executive director of the LatinosAgainstAlzheimer’s Network and Coalition. “As the U.S. Latino older adult population grows dramatically over the next 30 years, Alzheimer’s will have far reaching implications for our nation’s healthcare system and economy if nothing is done to curb its devastating effects.”
The release of the report will be followed by the inaugural 2016 Alzheimer’s and Dementia Disparities Summit on September 27 in Washington, D.C., hosted by UsAgainstAlzheimer’s Latino and African American Networks and Leaders Engaged on Alzheimer’s Disease (LEAD Coalition). The summit will bring together Latino and African American community leaders, caregivers, government officials, healthcare professionals and industry leaders and will focus on developing strategies and recommendations to curb the impact of Alzheimer’s and dementia on communities of color.
The USC Edward R. Roybal Institute on Aging builds upon USC’s longstanding tradition of creating socially relevant research, innovating educational practices, influencing policy making, fostering community-university partnerships and sharing best practices with direct service providers. The USC Roybal Institute on Aging maintains a strong interdisciplinary focus, with collaborations among faculty and professionals in such fields as social work, gerontology, psychology, preventive medicine, family medicine, psychiatry, oncology, American studies and ethnicity, and public policy. The mission of the USC Roybal Institute on Aging is to advance research whose goal is to enhance optimal aging for persons in minority and low-income communities.
UsAgainstAlzheimer’s (UsA2) is an innovative non-profit organization demanding – and delivering – a solution to Alzheimer’s. Driven by the suffering of millions of families, UsAgainstAlzheimer’s presses for greater urgency from government, industry and the scientific community in the quest for an Alzheimer’s cure – accomplishing this through effective leadership, collaborative advocacy, and strategic investments. The LatinosAgainstAlzheimer’s Network and Coalition drives awareness and action on Alzheimer’s and dementia’s disproportionate impact on the Latino community through strategic convening, policy analysis and advocacy – activating diverse health, community and policy stakeholders in the race for an Alzheimer’s cure by 2020.
We all know there isn’t enough support out there for family caregivers. However, there is some support out there. As a family caregiver — a spouse, sibling, child, other family member, or friend — you may qualify for financial assistance.
Some programs in the US provide family caregivers with a set stipend while others provide an hourly wage. You certainly won’t get rich as a paid family caregiver, but it can help replace some of the lost income and cover some of the increased costs of caregiving.
I can’t work now. I don’t have an income but thankfully my husband does. We make HUGE sacrifices in what we do/buy. A lot of medical supplies/private pay Aids are paid out of pocket. Sure, it would be a blessing if it was all covered. We paid over $10,000 to make our house handicap accessible. It’s HARD! – Andrea R.
I left my job 3 years ago to care for both my parents. – Pat E.
I provide 24/7 care year round. No vacations or days off. My mom is 89 with dementia. I get paid $0.00 for this care. Yeah I have to get her up, bathe, and dress her. Also prepare meals, do her blood sugar, blood pressure, and medications twice a day. I change depends for her. Depending on her functioning level I may have to puree her food and feed her. I handle her medical appointments as well. – Elizabeth B.
My daughter became disabled at 21 and I had to be her caregiver. In Alabama caregivers get nothing. I’m single so had to move us home to my mothers. She is 25 now but praying I can find a part time now. – Kim H.
There were so many times I had to chose between getting mom her med’s or paying a bill. It’s sort of what I am going through myself now. Mom was a little better off, since she had social security and my dad’s retirement, plus my pay. Me, all I have is my disability. At the very least it puts a roof over my head, which gets rid of that stress. – Thom F.
The last day I worked outside the home was Aug 2, 2014. Lost my job, car, in massive debt I can’t pay. I finally swallowed some pride and signed up for food stamps. $194/mo is all I have coming in. I love my mom dearly. – Tom C.
My Mom quit her job of 35+ years to take care of my Gran; we did shifts – her, my brother, and me before she passed from cancer (she also had TN). I’m blessed to be a SAHM but I also have 2 daughters – 1 autistic and 1 bipolar/autistic, and a husband with multiple medical issues (2x heart attack, PE, diabetic, TIA, etc) and I have TN. Honestly, we sold our home and my Mom’s home now and we live in a trailer park 2 blocks apart. It sucks to be sick in America. – Maria E.
I have to take early retirement to take care of my husband who has Alzheimers with Lewy bodies dementia and Parkinsons. Plus he’s legally blind from glaucoma. We don’t qualify for SSI and my insurance won’t pay for in home csre, so at 62 it’s me. I just hope I can do it. – Vicky C.
I ended up having to use every penny I had as well as having to sell everything even my car so i could take care of my mom and dad. While i don’t regret taking care of my parents it changed my life in ways I wouldn’t wish on anyone. – Marsha H.
Life is interesting..thirteen years taking care of my husband who had a stroke with brain injury, dependent on insulin…took care of my father who died of emphysema and now have my mother who suffers with heart failure and diabetes. One day at a time..we are on SSI income with medical services and medicine going up all the time. Working on keeping my house and paying the bills each month. One day at a time..we are blessed and this too shall pass. – Carlene E.
Caregivers are heroic and save our country millions in Medicare/Medicaid dollars annually by doing this difficult work themselves, versus placing their loved one in a care system. – William W.
Getting paid or receiving some kind of stipend would definitely relief the stress and worry over money for sure. I haven’t found any solutions yet. – Barb G.
The rules are different from state to state,county to county. In Prince William County,Va…they believe it is a Spouse’s Duty to take care of their spouse (I had to leave my job to take care of my husband),but if we lived 20 mins north,in Fairfax County,Va, I would be a paid caregiver! – Kimberly O.
Here’s how the programs work for real caregivers, like yourself:
I have been a paid caregiver to my hubby for sometime now, I’ve been home what seems like more then work. I am so grateful for this program, and even more so for the company I work for. Hubby hated new nurses coming out all the time giving his full medical history for every visit and never feeling any comfort or hospitality. I can recognize his needs before he does, and he too is grateful. – Shannon A.
I get paid. It helps, but I have to tell you the process in getting it took over 6 months and it’s a monthly battle trying to figure out all the red tape. You’re dealing with the government so keep that in mind. – Jeanne O.
I have a son. I am his carer and was on the carers payment and believe me it is not enough money to pay bills and live on. I gave it up and went back to work. But I still shower, feed, and dress my son before work. He can stay home a bit by himself till we get back and start all over again. – Valerie Z.
My father should have been eligible for this and was declined. – Sherry H.
I’m in Colorado and I get paid to care for my disabled husband. – Jessica C.
After many years as an unpaid caregiver for three different generations, I now qualify to be a paid caregiver for my adult medically fragile son who lives with me. Because of this, I can now afford his (expensive) special dietary needs, additional insurance that covers specialists who couldn’t/wouldn’t see him on medicaid/Medicare and to pay for uncovered medical expenses ie medications and his wheelchair. My son’s health is significantly more stable, it has greatly improved the quality of his life, but also mine. I’m no longer constantly torn between financial desperation and my son’s needs. It also saves the state money, as nursing home care would be expensive and as a family member I get paid a lower rate per hour than non-family members would. Win-win all the way around. – K.S.
In Kentucky I get a generous caregiver budget for my girlfriend. If we were married that wouldn’t apply. It’s not right. – Mike S.
In Texas they pay family caregivers, although you can’t live with the person. You can get paid 4 hours a day to be with them. – Heidi V.
In Texas there is a 6 month waiting list just for the paperwork to apply, even if patient is on hospice. If the patient has any funds over $2000 it’s a big fat DENIED! – Katherine W.
I get paid to care for my mother. We’re in California. – Kim D.
I get paid to take care of my son, but they will not take out social security for me for retirement. I don’t understand why not? – Colleen A.
Colorado has amazing benefits. You do get paid as a CNA to provide care. – Jessica G.
If you qualify for respite or nursing care in Michigan everyone can be paid except the spouse. The person that knows them and cares about their well being the most. The person that needs to be at every doctor appointment. It is so frustrating! – Danielle H.
I am in Maine. I don’t know about other companies, but the one I work for will pay you if you take the training. It’s all done online at home. – Cheryl M.
I am in the process of applying in California. The person receiving care has to be on Medi-Cal. Then they need a note from their doctor and a home visit. Fingers crossed that mine goes through. – Sharon K.
Yes, you can get paid in Illinois, but with stipulations. I needed to quit my job to be caregiver to my son and went through the process with the state, which took over a year. All they qualified me for was a respite care because the process took so long and I had already quit my job. Now the new governor coming in is probably going to take a lot of that respite away! – Nancy E.
In North Carolina you can be paid to be a caregiver for your adult children with disabilities. It’s not a lot and you can only get paid for 28 hours a week. It helps when you have to suddenly give up a job to care for your child. In our case, my daughter was severely injured in an accident over 3 years ago that left her a quadriplegic and with a TBI. I’m so grateful to have this income. I get paid through Independent Living. – Patricia W.
The state of Illinois has a program that I was paid through for over a year. It helped out a lot. I did it through the DHS’s DORS. Worked directly for my mother. It didn’t take long to do. In fact it was rather quick. Maybe 2 weeks? But with the state so messed up and all the budget cuts they were looking for anyone they could kick out of the program. And one day they showed up to do an unscheduled assessment. The case manager and his supervisor said my mom was too far gone and recommended a nursing home and kicked her out and that was that. – Aaron E.
In Illinois DHS DORS (Department of Human Services, Department of Rehab Services) only provides help for disabled people 59 and younger. I just got an email from them. They said go through Dept of Aging. Which I did and they said I would have to go through local senior services center, which told me the previous info I posted. So once again I’m in a dead end of endless chasing agency after agency. – Kelly W.
Yes, it is true you can get paid for caring for a family member. It’s very little, but better than nothing. – Judith M.
I am with vision home health care garland, Texas. It helps with my moms extras. – Angie P.
I get paid forty hours a week.. I only took up the option about a year ago. – Carolee S.
In Texas there is, but the waiting list is long. – Jewel K.
It isn’t the best deal. My niece lives in a state with generous caregiver benefits, and got paid. Then her dad died. She had no work skills or history and they lost the subsidized apartment. – Kathy G.
In Michigan they will pay anybody but a spouse. Our caseworker told us to get a divorce just a piece of paper! That’s crap we are still married! – Nikki D.
I live in the state of Arizona, I am a caregiver for my adult son. I work for an agency and became a certified provider. The agency can help you with paperwork to see if your loved one qualifies for services.If they do, you can become a certified provider and care for them. – Suzanne K.
In Georgia they have to be on Medicaid. My mom with ALZ will qualify for medicaid in the next year and then I can get paid to care for her as a registered CNA. – Sonja A.
If you live in Massachusetts, there are many programs that provide a money stipend for caring for loved ones in the home through medicaid. – Christine H.
I live in Ohio, I’m a certified caregiver for my adult daughter. I’m a independent provider through Medicaid and Department of Developmental Disabilities (DODD). It was a really simple process, requires CPR training, 8 hours of training, a background check, and a 20 page packet that I had to fill out. The worst part was the waiting; it took 16 weeks for me to receive my provider number. All well worth the wait, now I make a living along with caring for my baby girl! I thank God everyday for the fact it all worked in our favor. It took me four years to figure out that the program was available. – Scott T.
Only eligible for this if the loved one has Medicaid in Missouri. – Allyson L.
I get paid by Medicaid to take care of my husband here in Colorado. He’s paralyzed from his neck down following a car accident. – Ann T.
Oregon does, but it is a Medicaid program, so you pretty much can’t have much assets and there is a ton of other rules. And if you are a spouse then there are even more hoops to jump thru, as it’s a different program in Oregon, though still Medicaid. The process was supposed to take a couple months. Eight months later we finally got through all the red tape. – Dwight P.
My husband is disabled, C-4,5 quad. I am now able to be paid to be his caregiver. My hours are limited. Medicaid/Medicare keeps you stuck being dependent on them. My husband was a Master Plumber and could do some work from home on his computer. But, if he earns income, he loses his benefits. His medical costs are so high that we’re stuck. – Ann T.
I am in Maryland I have a 23 year old son with cerebral palsy, in a wheelchair and totally dependent of care. I left my job a year ago to take care of him full time. He has a caseworker, but they do not tell people these programs are available. I had to research and ask. Then they act like they know nothing about it. I pushed the issue and they found information. She applied for me to be put on his Medicaid waiver to be his paid caregiver. It has been a month I have heard nothing don’t even know what the pay would be. I hope everyone that needs this gets the help they need. It comes down to having to work but having to be home to care for them full time. I feel like there is either no help or very slow to get answers. – Linda S.
I get paid by medicaid to care for my mother. It’s a total blessing. – Angelina F.
Arizona has privately owned companies that hire family members or friends of family to provide in home care as well as people who just want a job. The client must qualify for care through state funded medicare. Client then gets assigned a company and caregiver. The client can request a specific company and caregiver to provide that care. More than half employees of in home care companies in Arizona are family or friend of the client. – Debra C.
I got paid thru Medicaid in Ohio to take of my Handicapped Brother. I took a lot of classes to get certified by the State. It’s not much, but it sure as hell helps. – Emma B.
In Tennessee if your loved one qualifies for both the PAE (physical assessment evaluation requirements) and the financial requirements for the Medicaid Choices program. However, I was told that in the near future Tennessee might do away with a family member being able to be the paid caregiver. For now it is in place. – Holly O.
In Illinois it’s a complete joke! I applied for this and was told my mom and I met the requirements. However, they would only pay 20 hrs a week and I had to go through training and get hired on through a company that works with the state. And if I was on the clock with them I wasn’t aloud to refill my mom’s meds or dispense her meds to her! Oh and she would have to apply for Medicaid and if she were approved when she passed away they have the right to put a lien on her house to repay back whatever they paid me! So I would have to go through training for someone to tell me how to take care of my Mom when they have no clue then they slap on a lien! We are sinking financially I have no choice to try to look for a job now and pray she’s ok alone. – Kelly W.
I was told I could be paid to care for my mom here in Illinois. But once she passes, her estate will need to pay the state back all the salary it had paid me. So, ultimately, my mom really has to pay me if we choose that route by taking it away from her beneficiaries. – Cindy H.
Each state has different Medicaid programs, so run a specific state Medicaid web search. There are also other options for paying for senior care services such as reverse mortgage or viatical settlement. – A.F.
Consumer Directed Attendant Support Services
I’m my fiancées full time paid caregiver. He has a Traumatic Brain Injury and Epilepsy due to his TBI. He is on Medicaid, so there is a Program so that you can be a paid caregiver called CDASS (Consumer Directed Attendant Support Services). It’s a home care choice for people with disabilities. Doesn’t matter if you’re family or not, if your loved one qualifies the caseworker determines how much care they require and that determines how much “allocation” (money) the state allows per month. The loved one can have more than one caregiver. They can have as many as they want, but you have to stay within your monthly allocation amount. Before this program was brought to our attention I was paid through a Seniors Resource Center so there are other options out there. Please be aware that it’s not the same in every state. I live in Colorado.
Community Based Alternative
In Texas it depends, I’m a paid caregiver for my adult son, but not until he was accepted for Medicaid and then we signed him up to a program called the Community Based Alternative or CBA. They pay me for 21 hours at minimum wage. It was a long wait, but we had nothing but time. He sustained a brain injury in a auto accident at age 30. It seems as though Medicaid has a don’t ask, don’t tell policy, so you have to ask. – Jan C.
Agency on Aging
If you have an Area Agency on Aging, that’s what it’s called here, you can ask them for help. I can take care of my mom and get paid, fill her meds and what not, but since she owns her home she can only get a voucher for $300. She has to pay whomever cares for her. Then she sends the signed paper to Agency on Aging of Westmoreland Co, then she is reimbursed. If she sells and rents a small apartment then she qualifies for more help. – Heather G.
Contacting your Dept. of Aging would be your first step. They will set an appointment to assess mom and her needs. My mom is non-ambulatory but was only given 15 hours a week. I had to go through my state rep to get a reassessment and I’m now at 22.5 hours a week. I had to go through a background check, fingerprinting and 3-day training class with Help at Home. I was told by the caseworker for DOA that I would get more hours if we didn’t live together, since they expect me to do all the other work anyway. – Michelle C.
I live in Arkansas and the Agency on Aging pays me two hours a day. It’s a joke. I am here 24\7. – Janet C.
In Illinois you can thru the Dept of Aging. Help at Home is the agency that I am paid thru for 22.5 hours a week at $10 an hour. Dept of Aging assesses the patient and determines the amount of hours that will be allowed. I am not allowed to give meds on company time. I had to give up POA to my brother. I am the only family member caring for mom. I am with her 24/7. The amount of hours paid is an insult but better than nothing. – Michelle P.
Supportive Home Care
It was a long processes for me in the state of Wisconsin. It took from my first initial phone call in February to receiving my first payment in July. Call your local Aging and Disability department. You can get paid Supportive Home Care (for doing laundry, cooking, errands etc) and then they have Supportive Home Care (for anything hands on…bathing, changing etc) you can make a decent amount of money. Plus the program is also to help keep your money in your pocket. They help pay copayments on prescriptions, if the person needs depends, disposable pads which is help and they have it delivered right to your house. It is most definitely worth checking into it. – Dawn
If you take care of a veteran, there is a benefit called Aid and Attendance available through the VA. I quit my job two years ago, moved in with my Daddy and he received an additional $700 per month to give to me for taking care of him 24/7. It’s not much but, it helps. – Stephanie T.
Rhode Island does not cover it unless you are 50% below poverty level and then it’s a huge waiting list to even get into the program if you qualify. Veterans affairs is even more bush, they don’t cover crap unless it was combat related. If not then ‘it’s we can give you a Dr or put them in the VA nursing home.’ If you have ever been to the VA you will understand that going to the local veterinarian would be a better choice. – Kevin S.
I’m in Tennessee and get paid through my papaws VA benefits. Differs in every state I guess. I’m sorry you all can’t get paid. Something should be done. – Elizabeth R.
I get a monthly stipend from the VA to care for my husband. Post 9/11 disabled vets and their caregivers should look into it. – Katy C.
In Florida we have VA Aid & Assist. My dad was a veteran. I get it for my mom. I am able to work and have someone with her when I am not. – Sandy H.
I’ve been my husband’s caregiver since November 2003. He became disabled due to service in Desert Storm; he was one of their guinea pigs that they injected with pesticides. The VA turned me down as his spousal caregiver since he’s not bedbound. – Glynnis P.
My husband has MS. He was also in Desert Storm and given a huge cocktail of unknown vaccines. We are currently pending on Aid and Attendance as well as SMC’S for various loss of use. I know the caregiver stipend is for post 9/11 only and for injury and not illness but there are other ways to get compensation, don’t stop fighting. – Tricia R.
Thank God, my mother took out an in home health care insurance plan back years ago that actually pays for a family member to care for her. If we didn’t have that, to where I’m paid to stay home and care for her…we would be sunk! Best decision she ever made by far! – Rita J.
I took care of my sister the last three years of her life.. Her insurance company did pay me to take care of her, but I was only able to get paid one month out of the year because I was a family member. – Jennifer G.
I’m getting paid to care for my mom. I had to become a CNA and register with a state-approved agency first. We’re in Louisiana. 50 hrs/weekly. It’s through her long-term care insurance. Still, it’s working out well. – Ruby D.
Shared Living Provider
Here in Massachusetts, I get paid (tax free) to be a Shared Living provider to my special needs brother-in-law. MA also has a program to pay caregivers for the elderly (even their own aging parents). It is a win-win all around. Group homes (for special needs) and nursing homes (for elderly) cost the government a small fortune for each individual. The brother-in-law living in a MA group home costs the government approximately $300,000 per year. To care for my other special needs brother-in-law, I get paid $30,000 per year, tax free. Just look at that massive difference! Government saves $270,000 annually and I make a living wage. Win-win. – Kim N.
Personal Care Attendant
In Massachusetts if the ill individual is covered by Masshealth then there is a strong possibility of qualifying for the PCA program. They assess, and approve hrs and a wage and Masshealth will pay someone to be the personal care attendant. It is a God-sent! Spouses can not provide the care but they can oversee the caregiver. I don’t want anyone having the difficulty we did getting enrolled. – Tiffany L.
In-Home Supportive Services
In California, there is the IHSS program (In-Home Supportive Services) via Dept. of Social Services for low income patients. I received payment for taking care of my mom, and later on, my husband’s uncle. – Penny F.
California has IHSS. However, you have to have SSI or MediCal to qualify. There is a MediCal waiver but it only applies to the developmentally delayed. My son is blind so we don’t get it. – Kassidee R.
In CA it’s called In Home Support Services. My 95 yr old Mother has 2 caregivers and I am their weekend relief and standby in case they need a day off or sick. – Debbie M.
If you have a special needs/disabled child/adult you can. It’s called In Home Support Services and they don’t go by family income, Bill Gates could get it! – Shawna S.
I get paid to take care of my disabled daughter through a federal SSI program administered by the state and county; it’s called IHSS. Annie A.
In California we have In-Home Support Services. You have to be low income, which I became after Part D went into effect years ago. I have multiple sclerosis and have a caregiver. Family member should not feel guilty or greedy. If you have to leave a job or cut back on hours, know that there are resources to get paid. – Janice V.
We have a support program here in California, but please read and be aware of issues that can happen. We took in my 90 year old mom-in-law after a long hospital stay and rehab. She is now on hospice care. We had to shift our work obligations to accommodate her needs. We knew that IHSS in California would take a while, but we thought it would be more like a month or so. It has been over three months, as she had to re-qualify for the support program as everything established to that date cancelled because she was in a facility over a month (she had received IHSS benefits for many years up to now). When she is finally approved again, she can “hire” me to be her caregiver. At that point I wilI need to go through the process of being approved, trained and fingerprinted, which may take possibly (they said) another 6 to 8 weeks. Now I realize that can mean much longer and I can’t do anything about it ahead of time. The good news is Mom is doing wonderful here at home with us. Needless to say, we now have some challenges financially to make this work. We will make this work no matter what, but I think it’s wise for anyone considering using a support program to realize that a any support program has many steps to quality for and know that the pay is minimal. Although she will be compensated back to the time she was out of the hospital, it would have been good to know that payment might be as much as six months later. Maintain your work status, if possible, until the support resource is established. – Patricia C.
I am actually a Social Worker who works at an agency that reimburses Caregivers through Medicaid for caring for a loved one in Massachusetts. The company is Caregiver Homes and they are in Massachusetts, Connecticut, RI, Louisiana, Ohio, and Indiana. – Christina H.
Guardians of Children
Parents of disabled children living in New York can now be paid, as of April 2016. – Bambi K.
Talk with your tax preparer. I do know there are tax deductions for caregivers. The amount would be deducted from gross income and your taxes lowered by your tax bracket. – John W.
The only thing I am aware of is the caregiver amount we can claim on our income tax. – Anita K.
My mother does not qualify for any state funded program so she pays me herself. I’d love to do it for free but cannot. She would have to pay someone whether it was a caregiving agency or a nursing home, so why not me? Besides, I am much much cheaper! Been this way for 16 years and it’s worked out fine. I feel bad for others who cannot afford this. – Beth I.
The sad reality is that our society does not value the elderly, ill, or disabled enough to provide support for them or their caregivers.
This needs to change! We need and should have programs in place to provide care for our elders that are straight forward, easy to access and compensate the hardworking individuals out there who lovingly care for those that require caregivers. – William W.
We all need to speak up and demand that the government and the insurance industry stops relying on unpaid family members and starts stepping up to the plate.
Some comments have been edited slightly for clarity or grammar.
Got back to town around 4:00 and had an hour long video waiting for me to assess a new methodology for treating Alzheimers and dementia patients. Dave Nassaney [The Caregiver’s Caregiver] was contacted by this Frenchman from Texas about promoting it. Dave wanted me to give him feedback on how to proceed.
I’ve given free advice way too often in my life to just tell this Frenchman how to best sell his service. I’m certainly not about to invest in it, which is what I think this was all about. Need to do a hell of a lot more research before I give any insights I might have to Dave.
Spent the rest of the day catching up with mail and writing for class.
The thought of going to the hospital can be very frightening and disorient for people suffering from dementia. The stay at the hospital could be for a short period, for instance, an operation or for a longer period due to a serious illness or accident.
Statistics show that people occupy two-thirds of beds are over the age of 65, and around 30% of them will have some dementia.
Since dementia patients have trouble understanding where they are; the confusion compounds if they are ever taken to a place which is unfamiliar to them.
This is why going to the hospital can be a very upsetting situation for them, and may even confuse them more than usual.
They may not understand where they are, as hospitals can seem very noisy for people with dementia. If you’re worried about taking your loved one to the hospital, you might want to check out these factors in the vicinity, to make the stay or visit as less cringe worthy as possible.
Staff who are skilled and have time to care
The staff should be well educated about dementia, and trained to handle the patient with care. Moreover, there should be an availability of specialised doctors and nurses for dementia, who can understand the disease and its conditions thoroughly.
The staff to patients ratio at the hospital should also be sufficient enough to support the complex needs of dementia patients.
Environment that is dementia friendly
Due to the compound nature of this disease, the kind of environment that a patient is kept in plays a significant role, and can have a lasting impact, both negative and positive on the individual with the dementing illness.
The hospital environment should be calm and should increase orientation, provide comfort and become familiar quickly. The lighting and floor should be fixated in such a way that it supports orientation and not disturb the patient visually.
For some patients identifying the bed, the area can be a lifeline, for this very reason the bed area should always be personalized with familiar items for dementia patients. Moreover, since mental stimulation is critical for a person suffering from dementia, the resources in the room should support activity and stimulation.
Care plans that are person centred
We are all well aware that the symptoms of dementia vary from one person to another; therefore, their care cannot be generalised. The hospital should ensure that the care for a dementia patient is based on the specific needs of that individual.
Their preferences and understanding of their abilities are crucial when developing a care plan. Moreover, to make the patient more comfortable in the hospital environment, family and friends should also be involved in the care plan.
Due to individual differences in the disease itself, the encouragement of social engagement and activities should be to an optimal amount; of course, the optimal amount also varies from one person to another.
Specialists should be present at all cost when devising the care plan; support from professionals can ensure that the individual with dementia is getting the right support.
Partnership with the caretaker
Adequate care of the patient acknowledges the needs of families and caregivers who have been helping the person with dementia since the very beginning.
Of course, the caretaker is often happily willing to assist the care of their loved one, but the hospital staff needs to take into consideration how they wish to be involved. Moreover, when it comes to decision making, the caretaker’s assessment in the decision-making process should always be considered.
This is especially important when hospitals are aiming to provide the right care to the person suffering from dementia.
Families sometimes hold valuable information that can help the staff get a proper assessment of the disease and provide care which meets the exact needs of the individual.
The care of dementia patients is ever changing and unique. Each family with a dementia patient may have special needs that are entirely different from another family with a member with the same illness. Hospitals, which take into consideration these four factors and understand the caretaker should consider the uniqueness of the patient for their loved one suffering from dementia.
ALMA CA– USEY
Alma Causey is a blogger by choice. She loves to discover lives and world around her. She likes to share her discoveries, experiences and express herself through her blogs.
You know, I could start this article out with a bunch of fancy words and statistics to perhaps prove a point, but I really don’t need to.
This is the 50th blog I’ve posted on The Caregiver Space this year, and all are in one way or the other, either related to my wife Annie, or she was the inspiration behind them. I lost her to a wretched cancer on November 2nd 2010. And that’s why you will see the words Because of Annie attached to the top of all my blogs.
Annie’s journey through cancer was very difficult, and the truth is, she was always dying a little more each day. From the moment of her diagnosis/prognosis, which was, “we can’t figure out why she is still alive,” but she may have “three to four weeks.” Imagine trying to wrap your head around that grim news.
And I get it, when someone says, “why would you post this blog during the holiday season when spirits are running so high.” My answer, “why wouldn’t I.” You see, I’m now thankful for what I have, which to me is the gift of having the ability and platform to share stories and events that are happening to caregivers every minute of every day, and don’t magically disappear during the holidays. I say things that many folks are thinking, but don’t want to talk about. I call it “The Truth.”
And the truth is, none of the serious illness we get are discriminatory. I don’t care if you’re a Republican or a Democrat, a lawyer or a doctor, rich or poor, black or white, it just doesn’t matter. Many of the serious diseases will level the playing field for all, and can bring you down no matter who you are. And you will most likely need a caregiver. Someone like me that truly does care for your well-being regardless of your status in life, and willing to share stories or articles with you anytime of the year. Some may just help you get through a rough patch.
Caregiving is like going on a journey where no person has gone before. Why, because if you haven’t been through the experience, you can’t possibly understand the concept of just how difficult being a caregiver can be. It will take you to places where you don’t want to go, and having you doing things that you don’t want to do. Your emotions will get very elevated at times, and your stress level can be at the top of the charts. In essence, stress from being a caregiver can, and if not controllable, create a very unstable and unhealthy lifestyle.
There are many books floating around out there on how to manage your stress. Well they may be fine when dealing with normal day to day lifetime stressful issues, and we all have them, some worse than others, but if you think a caregiver deals with typical stresses, think again.
Enter the caregiver for a terminally ill loved one, whatever the disease, throw in Alzheimer’s or Dementia, then you can honestly say, as did Tom Hanks from Apollo 13, “Houston, we have a problem.” And I don’t care how many books you read on stress, they are words and guidelines that can become meaningless to a caregiver under some very challenging, and tremendously unsettling circumstances. Imagine, under the dire circumstances of Apollo 13, someone handing Tom Hanks a book on how to deal with extreme stress. I wonder what his words would have been. Probably not, “oh, thank you.”
Yes, that was a simple metaphor, but in reality many caregivers face that scenario every day. And the truth is, there is no instruction manual or stress guide that can help you in the heat of the moment, which in truth is a moment that can be created many times a day, day after day. Tom Hanks was flying Apollo 13 by the seat of his pants, and so goes the caregiver. We have to adjust and improvise as events unfold. And of course, making the right decisions at the time will determine the outcome of the event. Good or bad. No pressure, huh.
If you don’t know by now, you should know, over and extended period of time, stress is a killer. It’s a fact that, many caregiver’s will get ill and die before the person their caring for dies. And it’s usually form some sort of live or dormant disorder that is triggered by excessive stress.
To prove my point I’m going to tell you what happened to me over the entire year of 2015, and why. It’s scary, and sneaks up on you without warning.
What is an extreme caregiver? Simply put, in my opinion, it’s a person that takes on the role of being a caregiver for a loved one that needs ongoing 24/7 care, which can lead to severe weight loss over a period of time, many sleepless nights, all while dealing with chaos and confusion from lack of instructions…And does it in a selfless manner, without complaint and with no regard for their own well-being.
That’s the way it was caring for Annie, as her hope for another day rested with me. There was no other choice. Annie had many broken bones from the cancer and was basically wheelchair bound, and in a hospital bed from the third week on. Just rolling her over in a manner that didn’t break another bone was a challenge. Her bones were very badly diseased from the cancer. She was on 200mg of Morphine a day, plus a Fentanyl patch, and Percocet when needed. Her pain medication, which she had to have, was my biggest nightmare.
I knew from day one Annie would not survive her cancer, but I guess I couldn’t accept the facts as they were presented to me. So, I spoke of my fears to her oncologist about all the pain medications she was on. He was brutally honest with me when he said that he was doing everything he could to keep her alive, and my job was to keep her out of pain. Then with strange facial expressions he explained to me the type of pain she was in, and walked away saying, “stay ahead of the pain Bob,” then turning back to say that if I get behind on pain control, playing catch up can be very dangerous as one extra pill can lead to the overdose that kills her. I guess I needed to hear that, and it seemed to make me more determined than ever to fight for her.
It was up to me to make sure that when she took her medications, I kept an eye on her for the first couple of hours watching for shallow breathing. If the breathing were to get too shallow, Annie could stop breathing altogether, and die. That was a huge responsibility for me, especially when trying to rest at night. I found myself continually waking up and looking at her chest to make sure she had positive air flow. Some nights her shallow breathing was so bad I stayed up all night, giving her a head massage and talking to her.
Bottom line is, I loved her and was willing to do whatever it took to keep her alive. Yes I was tired, but I knew I had the rest of my life to sleep and get rest, but in her case the days were numbered, it was not a matter of if, but when.
In a sense, my life was no longer mine. It belonged to everything I put into caring for Annie. And I would not change a thing. I loved her deeply, and whatever part of her that was not my world, became my world. My position in her life was way more than just being a loving husband. I was determined to make sure that when the sun set, even during the dark of night, she had the best possible chance of surviving for sun rise, and the dawning of a new day.
Thirty months after diagnosis, Annie passed. She died with the same grace she fought cancer with. She took me on an extraordinary 30 month journey, allowing me to see what a precious gift she was to me, while helping me understand love in a way that many people never will. I discovered, that for that moment in time, true love penetrated deep into my soul, there was no anger, no resentment, and I found it to be very spiritual. It seemed that my goal in life while caring for Annie was to share every minute I could with her in happiness. Despite everything cancer had in its arsenal to hurt Annie with, we fought back on a daily basis, and we had some fun.
Annie’s journey through cancer was never about living, it was always about dying, and a caregiver man and his beautiful wife that simply refused to throw in the towel. We literally fought until the end.
When you consider what I just said, when Annie died it was like I hit a brick wall doing one hundred miles an hour. I was totally lost, swallowed up by darkness and despair. I just wanted her back. Nothing else mattered. That went on for about three years, day and night. I didn’t know from one day to the next if I was coming or going and for that matter didn’t really care. Over a period of the 4th year the pain started easing considerably, and I was starting to feel alive again. So I thought.
Stress related illnesses
The year 2015 was the worst year of my life for healthcare issues. I was never a sickly person, and all through Annie’s illness I never even had a sniffle. My four years of grief were not quite uneventful. I was put on heart medication to control heart palpitations that started a few months after Annie died.
A few months after Annie passed I went to see my general practitioner for a physical. The only problem he found was low vitamin D. Still, his lingering words, “Bob, there will be consequences for your extreme caregiving, they just haven’t reared their ugly head yet,” still ring in my head. I think his thoughts at the time, followed by 3 years of intense grief, and the 4th year spend coming down from grief, created the perfect storm in 2015. My immune system broke down from all the stress.
In January of 2015 I had my annual physical. All my red blood cell counts were abnormally low. The low blood counts were later on diagnosed as being caused by moderate to severe Gastritis with anemia. Also, I had two separate lung infections with inflammation, requiring steroid treatment, followed by shingles. Then out of nowhere, came a high level of full body inflammation which triggered a search for tumors in my body. The inflammation in my body cause me to have what I called the perpetual flu, every day for 6 weeks. My general practitioner asked me if there was any place in or on my body where I didn’t hurt, I said, “my feet.” He kind of laughed as he left the room.
It’s been a long year for me. The low blood counts and inflammation triggered so many tests, I felt like a pin cushion. I’ve had a heart catheter, colonoscopy, gastroscopy, x-rays, and a sundry of other tests. Plenty of antibiotics, steroids, pain pills for shingles and so on. It was simply one thing after the other spread out over the year.
It seems like I’ve weathered the storm for now, but I have some more testing in January. The good news is, I don’t have auto immune disease, the bad news is, my full body inflammation can return at any time triggering another round of shingles and other illnesses.
I’ve climbed a mountain of health issues this year, but caring for Annie taught me how to fight through illnesses that to her would have been commonplace.
The answer, Caregiver=stress, Love=stress, Pain=stress
Under the circumstances as I presented them above, I don’t believe there is an answer to stress relief. Problem is, if you really love someone, when they hurt, physically you can’t feel their pain, but in your heart you certainly can and will feel their pain.
When my wife Annie was standing beside me and I heard her right femur snap and her hip break, and the audible sound of pain, all I could do was catch her as she was falling. Where do I put that! When she was put on the ventilator for 5 days fighting double pneumonia, sepsis (blood poisoning), and swine flu, I was told the odds of her surviving this event were incalculable. Where do I put that! The 4 or 5 times the doctors told me that Annie would probably not survive the night, where does that go. These types of events were a main stay of Annie’s illness. They happened often.
Looking back, it’s obvious I was living in anticipatory grief. Not knowing from one day to the next if she was going to survive or not. So in essence, the stress was not going anywhere. It was interlocked with the anticipatory grief and went with me where ever I went. You can’t make the feeling of doom and gloom go away and you can’t relax or read it out of your head. It’s there, and there it will stay. You’re gradually getting sick, and you don’t even know it. You think you are just sad.
Then, over time Annie passed. The anticipatory grief turned to full blown grief and from that point on, the stress was firmly entrenched in the grief cycle.
Three months after Annie passed I started seeing Dr. Bryant, Psychologist. The first six months I saw him twice a week, one hour a session. Five years later I still see him on a weekly basis for an hour each session.
I can look back on the many times, when I got back into my vehicle for the drive home after leaving his office, feeling okay, then I’d see something that reminded me of Annie and all the dark emotions came flooding back. Like I said, stress and grief are sort of intertwined, and stress seems to piggybacks off of grief.
When I first found out I was not well in 2015, the damage to my immune system had been occurring over a period of the previous six and one-half years. How was I to know that? And what could I have done to fix it, if I had of known? There is no magic potion or pill to take away ones pain. Yes, the pain can be masked through medication, but when the mask comes off, guess what, the grief that you haven’t dealt with is right there waiting for you with all its glory and stress.
Bottom line, if you love deeply, you will grieve deeply, the stress will be strong and right there with you too. Stress can be, and sometimes is, “the silent killer.”
It was a warm August day in 2014, my husband said he was taking our dog (a longhaired german shepherd) Amber for a walk at our local park. He had always taken Amber for walks every day sometimes two or three times a day. Since he was retired, he and Amber bonded after our other two longhaired german shepherds has passed away.
Today seemed like any other day. I was at home dealing with my own health issues. I was battling vertigo since the end of June 2014. It turns out, I have Meniere’s disease, which is episodic vertigo. I was very sick the first two months. In August, I seemed to be getting some balance back and was able to drive again and get around without help.
I looked down the street by chance and saw my husband Gordon walking towards me with a fellow chasing him saying he forgot his hat. He looked distraught. He had Amber on a rope as he had left her leash at home. I tried to give it to him on his way out but he was in a hurry. I asked him what happened? I said where is the car? At first, he said “I don’t know” and then he said “oh its at Heritage Park.” So we had to walk back about 10 blocks or so to the park to get the vehicle. We found it parked in the park, not in the parking lot with the door wide open. I said “where are your keys” and he said “I don’t know, I lost them.” I said where is your cell phone and he did not know where that was either.
We got into the car and started to drive home and Gord turned to me and in a childlike voice asked “can we get some ice cream?” I was taken aback by his response to this whole situation and I was at that point very concerned something was terribly wrong. You see my husband is a big man, very masculine, rode a Harley and was generally just a great looking man and loved to talk. So for him to say this was just too odd for me. Once he got home he sat down on the cement stairs and said he thought he was having a heart attack. He had one when he was 52 years old and last year he was 62 years old. So I called the ambulance and off to the hospital he went. So after some consultation at the hospital and check over, it was determined that he had some kind of mental breakdown. The doctor suggested he be admitted to the psychiatric ward of the local hospital. He then spent two months there while they assessed him and stabilized him. He was diagnosed with several types of dementia including Alzheimers, Parkinson’s, vascular and frontotemporal dementia. It was there he deteriorated some more. He no longer talks much now.
Looking back, there were signs but not big signs, the doctors were quite amazed of how fast he went downhill in such a short time period.
In months to follow, I learned very fast about dementia and that my husband would never be the same person again. I am his sole caregiver now. As his caregiver, I am dealing with a rare brain aneurysm myself and Meniere’s disease (episodic vertigo). I am back to work part time as a legal assistant which has been my career the past 35 years. I have to continue to work to pay the bills.
Emotionally, financially and psychologically it has all been a big punch in the face, but I am gradually getting up slowly. My main focus is helping my husband. It has been only a year and a half ago that he was able to carry on conversations, drive, write, held down a job driving a bus for seniors, always did the cooking. He can no longer do the following at this time:
make complete sentences; thoughts fade away
cannot use TV remote; unable to use guide to change channels
unable to prepare meals except for getting cereal
does not always take his pills; at sundowning he sometimes refuses to take pills
is able to understand some things – although when he repeats stuff back to me I have said to him, its all garbled and isn’t what I said
basically is a yes or no answers and sometimes doesn’t say anything
shakes when putting on the leash on the dog and taking it off
shuffles while he walks – he has lost his balance once that I have seen, he fell on the couch
unable to ascertain time
doesn’t want to get out of car when there are dogs in the park but will go if there are no dogs – perhaps he is scared and confused of too many obstacles around him
unable to use computer
does not know value of money
can carry groceries, but has a hard time lifting things like a towel to dry himself. Had to give him lightest towel and he still doesn’t dry off enough. Cannot wash hair and is not shaving as much as he should
doesn’t eat much
has problems swallowing and chewing
gets frustrated if I don’t do things right away .ie getting the oil changed in car
can’t remember the dog’s name
doesn’t remember my closest friend, Joan’s name
he’s starting to forget people close to him – their names, etc.
has problems lifting anything too heavy
stays in the car a lot while I do errands, doesn’t want to come with me much anymore
doesn’t know what day it is – asked if I was going to work and it was a Sunday (I never worked Sundays)
he is sleeping a lot, even when I am there
cannot use his cell phone
cannot use the bank machines anymore
The list goes on. I know it won’t get any better. But what I do is take the time just to watch a movie on TV with him or watch our favourite TV shows together. I try not to get frustrated with him and when I do I always stop myself and tell him I love him instead of showing frustration. It has been a hard loss, both emotionally and physically. I try not to dwell on the financial part of it. It has been tough. Never in a million years did I think at my age of 54 years that I would be dealing with these types of problems. Sure I understand that life can bite you when you least expect it but to be pulled in every direction, it has been a rough road. Also, just a couple of weeks ago my husband was recently diagnosed with skin cancer and at this point we don’t know which stage its at but we are consulting with a surgeon this week. Also, because of the medications he is on (and I suspect he is not brushing his teeth like he used to), his teeth are starting to decay. It is really tough to get him to brush properly. You almost have to stand over him to wash and clean himself properly.
I am in the process of having some outside care come in periodically to make sure he is eating lunch and take him for walks. I feel bad that he is unable to get out of the house and go for a coffee. He can walk around the neighbourhood but that can get boring real fast.
People say to make sure you look after yourself and I am doing what I can. I know there are people out there that understand these words that I am typing and expressing and then there are those that will never get the dementia.
There are no set rules to follow when caring for someone with dementia. Things can change day to day. You are faced with the unknowns. Some days he is more “talkative” and wants to do things and other days he just wants to sit there. I try to go back and remember him the way he was before this all happened. There were days when he was very talkative and on the go and other days he just wanted to take it easy. He was always a caring person and also was willing to help others without question. That part of him is still in there, you just have to look at his actions differently now. Just go with the flow… let him take you for the ride. Sit back and enjoy the ride with what time is left.
Confessions of an Imperfect Caregiver, a moving true story of the seven years Bobbi Carducci spent taking care of her father-in-law Rodger, is a testament to love, compassion, grace and courage in the face of often inconceivable challenges.
At the time Ms. Carducci and her husband took Rodger into their home, they were not aware of his medical history, which included life-long schizophrenia. He also suffered from other medical conditions, including dementia and Parkinson’s, which made Ms. Carducci’s day-to-day experience a kind of rollercoaster ride. In addition to caring for Rodger at home, she proves a valiant advocate for him when he is hospitalized, at times battling with medical professionals to get the care her father-in-law needs or simply to keep him alive.
The bond between Rodger and Ms. Carducci is clear, even though his language capacity is limited. At one point, Rodger says to Carducci, “You’re my best friend.”
Her tale is nothing short of heroic–invaluable for fellow caregivers. None of us is handed a how-to manual on taking care of an ailing relative—we must make it up as we go along, while doing research and advocating for our loved one. “Confessions” is especially relevant at present when an estimated 60 million families are caring for an aging or disabled person at home, and the majority of caregivers are women. It is a must-read for anyone who has a family or has loved another person. A story for us all.
NIH-funded study examines medical, care costs in last five years of life.
In the last five years of life, total health care spending for people with dementia was more than a quarter-million dollars per person, some 57 percent greater than costs associated with death from other diseases, including cancer and heart disease. The new analysis, appearing in the Oct. 27, 2015, online issue of the Annals of Internal Medicine, estimates that total health care spending was $287,000 for those with probable dementia and $183,000 for other Medicare beneficiaries in the study.
The analysis was funded primarily by the National Institute on Aging (NIA), part of the National Institutes of Health. Additional support was provided by the American Federation for Aging Research.
Amy S. Kelley, M.D., of the Icahn School of Medicine at Mount Sinai, and colleagues analyzed data from the Health and Retirement Study, a nationally representative longitudinal study supported by the NIA and the Social Security Administration, as well as linked Medicare and Medicaid records and other data. They calculated the “social” costs of all types of care for 1,702 Medicare fee-for-service beneficiaries age 70 and older who died between 2005–2007. Patients were divided into four groups: those with a high probability of dementia; those with either cancer or heart disease; or those with another cause of death.
The researchers calculated costs from Medicare, Medicaid, private insurance, out-of-pocket, and informal care over the last five years of life. Specific categories of spending included insurance, hospital, physician, medication, nursing home, hired helpers, in-home medical care and other expenses. The investigators also measured out-of-pocket spending as a proportion of household wealth.
“This complex analysis lays out the significant health care costs to society and individuals in the last five years of life,” said NIA Director Richard J. Hodes, M.D. “It provides an important picture of the risks that families face, particularly those with dementia and those who may be least able to bear major financial risk. Such insights are critically important as we examine how best to support the aging of the U.S. population.”
While average Medicare expenditures across all four disease categories were similar, almost all other costs were consistently higher for people with dementia. Medicaid — the federal/state program that supports medical and long-term care for people with limited funds &mdash expenditures for people who died with dementia averaged $35,346 vs. $4,552 for those without dementia. The dementia group had significantly higher enrollment in Medicaid at the start of the five-year study period (21 percent) than those who died from cancer (8 percent), heart disease (8 percent), or other causes (13 percent). Enrollment in Medicaid during the last five years of life also increased for those with dementia (27 percent) compared to those with cancer, heart disease and other causes (12 percent, 15 percent and 15 percent, respectively).
For families, out-of-pocket spending for those with dementia was $61,522 compared to $34,068 for those without dementia. Informal care costs were estimated to be $83,022 for people with dementia vs. $38,272 for those without dementia. In addition, out-of-pocket spending as a proportion of total household wealth five years before death was significantly higher — median of 32 percent for dementia and 11 percent for other diseases. For African-American households the median out-of-pocket expenditure was 84 percent of household wealth for those with probable dementia.
The gap in the financial burden between those with and without dementia was larger among those who were unmarried, African American, and had less than a high school education. Single women with dementia also incurred more out-of-pocket costs than married women with dementia.
About the National Institute on Aging: The NIA leads the federal government effort conducting and supporting research on aging and the health and well-being of older people. The NIA provides information on age-related cognitive change and neurodegenerative disease specifically at its Alzheimer’s Disease Education and Referral (ADEAR) Center at www.nia.nih.gov/Alzheimers For more on health and on aging generally, go to www.nia.nih.gov. To sign up for e-mail alerts about new findings or publications, please visit either website.
About the National Institutes of Health (NIH): NIH, the nation’s medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.
Whether you’re new to caregiving or a veteran, there are still things to learn about the US healthcare system. This series of videos from Alz Live provides a roadmap. This is part seven of an eight part series.
You’ll notice issues with communication, difficulty with balance or walking, or problems with routine tasks like getting dressed or eating.
Medicare and most private insurance reimburse for therapy services. Don’t hesitate to discuss the need for services with your loved one’s primary care provider.
Go to the Experts
Therapists bring a unique perspective to caring for a person with Alzheimer’s. Their focus will be on optimizing the living environment and communication processes.
“It’s not like rehab where the goal is to help recover function,” says Catherine Piersol, Ph.D., OTR/L, Associate Professor, Department of Occupational Therapy at Thomas Jefferson University in Philadelphia. “We focus less on what a person cannot do but rather what they can do.”
Environmental issues like cluttered living space can impact behavior, Piersol explains. Clutter is distracting and unsettling and can lead to a lot of the agitated behavior seen in some people with Alzheimer’s. Occupational therapists do a lot of caregiver education about improving processes to make daily life safer and easier, such as installing bed rails, shower grab bars, removing throw rugs and teaching proper transfers in and out of wheelchairs.
Elizabeth Oloo, a Human Resources Manager in Washington, D.C., says she learned a number of enormously helpful lessons from the occupational therapists who helped her mother. Among them were how to make her home safer, how to effectively move her mother from the bed to a chair, and how to help her bathe and dress.
“They were wonderful and very encouraging and patient,” she said. “The OTs also matched their approach to her mental status and ability on the days they came to our home. If she was a little more confused or agitated, they handled her in an incredible way and worked with her to keep her calm and focused.”
Working with What Works
“Our process is to educate the family to relax the rules. We help figure out what will work for them, and develop new routine that is easier to follow,” says Piersol, who is also the Clinical Director of the Jefferson Elder Care program.
They help caregivers learn to “reframe,” something she calls errorless learning. Nothing is wrong.
“For example, if mom thinks it’s Thursday but it’s Monday, it’s not that big a deal,” she says. “We teach the caregiver to understand it’s not about being right, it’s all about engagement.” Many families say they want their loved one to feel as independent as possible, so they tend to correct rather than just roll with it. Relish the interactions you have, she advises.
While many people with Alzheimer’s and other dementias are capable of walking in the later stages of the disease, they often have balance and coordination problems, which lead to falls.
A physical therapist (PT) can train the muscles to “learn” to respond to changes in the environment, such as uneven or unstable surfaces, according to the American Physical Therapy Association. PTs also teach family members how to safely move, lift, or transfer the person with Alzheimer’s disease to prevent injury to the caregiver as well as the person being cared for and how to use adaptive equipment and devices.
Physical therapy can provide a person with an activity that he or she can perform successfully and it can help to improve breathing, mobility, and endurance. Exercise has been shown to help reduce the restlessness and wandering common in many people with Alzheimer’s and other dementias.
Communication is an area that often leads to frustration and anger for both caregiver and loved one.
“Caregivers need to reduce the complexity of the communication because the person with the disease can’t process it. We help them change the communication approach, like counting to five before repeating a question,” Piersol says. “It’s how you say it and then giving the person time to respond.”
Speech-language pathologists (SLP) are experts in helping the person with dementia preserve communication and can train family members to improve the processes. If the person has trouble swallowing, an SLP can teach compensatory strategies or help alter the diet so he or she can eat without risk of choking.
Here are some helpful communication strategies for caregivers from the American Speech, Language and Hearing Association:
Repeat key information to help maintain focus
Give choices rather than asking open-ended questions (“Would you like coffee or tea?” instead of “What do you want to drink?”)
Keep information and questions short and simple
Use written cues for activities (such as how to get dressed)
Use “memory books” to help the person recall personal information
“This is a very challenging disease,” Oloo says. “But having the therapist at home really helped my mother function the best she could and helped my family cope with this struggle.”
Talking the Talk
Speech-language pathologists can help caregivers deal with common communication issues. They include:
Difficulty finding the right words
Repeating the same words or phrases again and again
Substituting words that sound similar
Inventing new words to describe familiar objects
Easily losing train of thought
Difficulty organizing words logically
Reverting to speaking in a native language
Using curse words (a strange quirk of diseases that sap language skills)
Speaking less often, or even not at all
Relying more on nonverbal gestures to compensate
Having trouble understanding conversation, questions and instructions
Make Use of the Help at Hand
Medicare and most private insurance reimburse for therapy services received in home or in a facility. Don’t hesitate to discuss the need for services with your loved one’s primary care provider if you begin to notice issues with communication, difficulty with balance or walking, or problems with routine tasks like getting dressed or eating.
Whether you’re new to caregiving or a veteran, there are still things to learn about the US healthcare system. This series of videos from Alz Live provides a roadmap. This is part six of an eight part series.
Nurse Practitioners and Physician Assistants, alternatives to doctors, help ensure that patients have timely access to quality health care.
Great Players to Have in Your Court
Like many caregivers, you may regularly interact with a Nurse Practitioner or Physician Assistant on your loved one’s care team, rather than the primary care physician. That can be a good thing.
“Many caregivers are happy to talk to advance practice nurses about issues they aren’t necessarily comfortable talking to the physician about,” says Elizabeth Capezuti, Ph.D., R.N., F.A.A.N.
It’s an observation based on considerable expertise. Capezuti is the William Randolph Hearst Foundation Chair in Gerontology and Professor at the Hunter-Bellevue School of Nursing in New York City. She hears many versions of the same story.
“My mother’s internist didn’t really have time for her and he didn’t take a holistic approach to her Alzheimer’s diagnosis,” said Barbara Glickstein, who helped her mother, then in her late 80s and living in Florida, find a Nurse Practitioner.
It took some time, but they eventually connected with the only registered NP in the area — a 40-minute drive away. “Mom really liked her. She was very available for things that required clinical skills and primary care knowledge and, because of her nursing training, she could also address the psychosocial needs, that may or may not may be medically serious but still a concern to Mom.”
What Are They?
A Nurse Practitioner is a registered nurse (RN) with advanced education and clinical training who provides an array of health care, including the diagnosis and management of common as well as complex medical conditions.
NPs specialize in specific areas of care like gerontology or women’s health and work independently or in collaboration with a physician practice, depending on individual state regulations. With training focused on the medical/nursing model, NPs bring a comprehensive perspective to health care. According to the American Academy of Nurse Practitioners, what sets NPs apart from other health care providers is “their unique emphasis on the health and well-being of the whole person.”
It makes sense for caregivers and those with Alzheimer’s to rely on nurse practitioners for routine care in many situations, Capuzeti says. “We’re talking about the type of patients that need lots of supportive care in terms of how to do the day-to-day, the functional things, as well as the medical primary care.”
Physician Assistants, or PAs, also provide routine care — they perform physical exams, diagnose and treat illnesses, order and interpret labs, imaging and other diagnostic tests, counsel patients about wellness and preventive health care, assist in surgery, and prescribe medications. They follow a medical/physician model of care, focusing mostly on disease diagnosis, treatment and management. PAs practice under physician supervision, although task delegation can be very broad, depending upon specific state regulations.
The influx of people into the health system from the Affordable Care Act, and the wave of aging baby boomers who need geriatric care, mean “physicians are learning new ways to work with patients and caregivers in the office setting,” says said Peter DeGolia, M.D., Professor of Family Medicine at Case Western Reserve School of Medicine in Cleveland, OH. “There are changes occurring on the provider side; many for the better.”
Having an NP or PA in the practice can foster better communication and help make sure little things don’t fall through the cracks because the physician is rushed.
Reasons for the Need
At least 55 million people in the United States live in areas with severe physician shortages, according to the Health Resources and Services Administration.
Nurse Practitioners and Physician Assistants can help to fill that void to ensure that patients have timely access to quality health care. Using the services of an NP or PA for routine care can mean faster appointment scheduling and less time in the waiting room; for those in rural areas, it may help to avoid having to drive long distances to get their loved one quality, routine care. You may also encounter these health professionals in skilled nursing facilities or in home care settings.
“There are people who say, I only want to see my Nurse Practitioner, and there are other people who say, ‘I’m not paying to see a Nurse Practitioner, I want to see a doctor.’ But I think that you should be open to the person that you can have the most useful conversation with,” says patient advocate and author Trisha Torrey. She finds that because of their training, “nurses listen differently.”
Glickstein said her mother’s NP was an excellent all-round communicator. “She worked with me by email long distance. I could ask a question in the morning and I’d get a reply by lunchtime.” More importantly, her mother felt that her physical and psychosocial health care needs were met. “I got the sense that she didn’t feel invisible. It was a whole different experience for her.”
USAgainstAlzheimers, or USA2, is a national organization that engages in “public advocacy, federal relations, grassroots activity and voter relations” on behalf of those with AD and their caregivers. http://www.usagainstalzheimers.org/
New York University’s Fisher Center for Alzheimer’s Research Foundation has a free monthly newsletter at www.alzinfo.org. This NYU site also has a link to “Clinical Stages of Alzheimer’s” — a comprehensive timeline to alert caregivers about what to expect as their loved one declines through the early, moderate, and severe stages of AD.
A website coordinated by Cornell Medical College to help caregivers prepare a safe home environment for someone with Alzheimer’s can be found at www.ThisCaringHome.org.
Liz Seegert is an independent health journalist who covers aging and related issues. Follow Liz on Twitter and see more of her work at lizseegert.com.
When I asked the funeral home director about obtaining an autopsy for my mother, I was met with a long, uncomfortable silence, as if I had asked about arranging a cannibal feast with my mom’s corpse as the main course.
“Do you really want to do that,” he asked, incredulity creeping into the placid tone required of funeral home directors.
Yes, I did want a satisfying ending to the final chapter of my mother’s life. Yes, it was likely that the colon cancer had returned. But how come the litany of tests she had performed over the last several months had shown no signs of cancer?
The hospice nurse was a bit more understanding about my need to know what killed my mom. She then asked me an intriguing question. “What would you do differently if you had a formal diagnosis?”
After watching Alzheimer’s slowly rob my father of his brain, I had genetic testing performed and found that I do carry one copy of the APOE e4 gene, which is believed to increase the risk of developing Alzheimer’s, according to the Alzheimer’s Association.
My mother’s oncologist assured me that because of Mom’s age when diagnosed with colon cancer (75 years old), and no previous family history, the colon cancer was likely just a random misfortune, and not due to a genetic predisposition.
Even if I’m to assume that I’m facing either Alzheimer’s or colon cancer in my future (in worst-case scenario I could end up with both), as the nurse asked, what would I do differently?
I am already pretty darn healthy. I walk every single day, usually at least 2 miles per day. Because I have celiac disease, I already have to watch my diet. I strictly adhere to a gluten-free diet, and have done so for over a decade. I mainly consume a Mediterranean diet, eating a lot of salads, fruit and seafood. I don’t drink sodas or eat fast food, but I eat bacon and steak a few times per year. I don’t smoke, but I do enjoy alcohol and have a bit of a sweet tooth. Am I willing to adhere to a vegan, raw food, alcohol- and sugar-free diet for the rest of my life?
So if an autopsy wasn’t going to directly change my future, why was I so intent for my mother to be sliced open and the mystery of her death to be officially solved?
An autopsy could have determined if the cancer had returned, or if had spread beyond the colon. It also could have put to rest a lingering suspicion that my mom’s sudden, acute symptoms were not cancer-related at all, but some other ailment that was treatable, if she could only have been diagnosed in time.
But, as the funeral home director clearly outlined, an autopsy would be very expensive, and would only offer a very basic overview to determine a cause of death. There would be no deep dive into underlying conditions. The examiner would simply cut into my mother enough to determine a cause of death, and stop there.
So the autopsy would have mainly been to assuage my lingering guilt that I didn’t do enough to help my mother over the last year of her life.
You can’t really put a Band-Aid on pain, as it is both invisible and omnipresent. It is felt with every movement and breath, yet cannot be observed like a bruise or wound.
Yet we had no choice but to continue trying to slap bandages on the pain, because we kept being passed off from doctor to doctor like a hot potato. Mom’s surgeon suddenly moved out of town. It took a month or two to find a replacement, and then Dr. Newbie’s calendar was overfilled with patients. On the day of my mom’s first scheduled appointment with Dr. Newbie, his wife had a baby and he abruptly canceled all appointments. So that appointment was rescheduled, but there was a mix-up, and either my mom got the date wrong or the doctor’s office did. So the appointment had to be rescheduled again, and this time, a big snowstorm moved through the area, and the office was closed the day of my mom’s appointment, while she was stranded in her condo, the steep road impassable.
This runaround went on for months, literally. Mom was becoming weaker, the pain more persistent. She was eating less. She was tired, and getting past the point of hope. She was tempted to just skip seeing the surgeon altogether. Finally, on one of my visits to see her, we finally saw Dr. Newbie.
It was a total disappointment. The unbelievably young-looking surgeon never looked at or touched my mother’s distended abdomen. He instead stared at his computer screen, seemingly surprised, like myself, that all of my mother’s tests had came back negative, showing no signs of cancer.
Dr. Newbie of course ordered a colonoscopy, but also admitted that my mother was in no condition to have one at the moment. So instead, he ordered juicing and herbal supplements to build up her strength and immunity.
While I am supportive of alternative medicine, suggesting that a frail, sick, elderly woman who lives alone should go out and buy a juicer, and then go track down a bunch of organic fruits and vegetables, wash them, and juice them, is pretty out-of-touch with reality.
I bought her a few varieties of organic fruit smoothies, but they gave her diarrhea.
Ditto the spirulina.
I ordered her a liquid calorie booster to put in her food. It ruined the last can of soup she ever ate.
Following the doctor’s orders was short-lived and ultimately pointless. Mom could only handle drinking Ensure and Boost drinks. Those bottles would be her breakfast, lunch, and dinner for the last month or so of her life.
With no hope of Mom being strong enough to endure a colonoscopy, I knew we would never have a definitive diagnosis.
Colon carcinoma is the diagnosis that ended up on my mother’s death certificate. Still, I feel it should have an asterisk next to it. There’s a 95 percent chance it’s right, but I can’t help wondering if there was something else going on, something that could have been fixed.
It’s the $5,000 question that I will never have an answer to in this life.
What would you do if both parents were diagnosed with Alzheimer’s?
On the day of their diagnosis, my father struggled to his feet, yelling, “How dare you use the A. word with me,” while my mother wagged her finger at the doctor scolding, “Shame on you.”
They defended each other, Mom by asserting, “We’re not leaving our home,” and Dad reassuring, “We’re just fine.”
About his driving Dad stated, “I’m an excellent driver, I’ve never had an accident.”
After a move to assisted living, convinced they were on a second honeymoon, they broke the news, “We’ve decided not to have more children.”
In the late stages, they politely shook my hand, inquiring, “Now, who are you?”
At the very end I was honored to hold my parents’ hands as they drew their last breaths.
Thank you, The Caregiver Space, for providing a forum for those going through caregiving journeys. Here’s my story.
At age 86, both of my parents were diagnosed on the same day with Alzheimer’s disease.
Three years prior, my sister and I became concerned about their mental clarity.
I lived only one mile away from my parents in our small town of 700 and worked full-time as an elementary teacher. But my sister lived 1000 miles away. In order to keep her updated about my concerns, my sister suggested I keep a journal of oddities. Each time we talked by phone I’d open the journal and review. You might think this sounds like a recipe for disaster——one hometown daughter, and one far away——but my sister was my constant support, my therapist by phone. She visited often and was willing to take on the role of bad cop when difficult decisions needed to be made, so I could remain the loving caretaker.
I journaled about concerns for Mom and Dad’s driving ability, lack of safety in their home, cleanliness, and hoarding. Feeling like a Judas betrayer, I hid the journal in the bottom of my kitchen junk drawer under a stack of telephone books, pencil stubs and dried-up pens, hoping no one would find the traitorous things I’d written.
The journal became a key piece of evidence for their doctor at the time of their diagnosis.
Throughout the six years and three moves that followed, eventually to a locked dementia unit, their lives ended but their spirits live on through our family.
We were raised filled with faith. We prayed around the dining table, thanking God for blessings as big as world peace and as small as the first garden tomato and tasseling sweet corn. Mom and Dad knelt beside the bed every night praying for health concerns for those near and dear.
As the end of life approached both talked about visits from their parents and deceased family members. I came to believe our loved ones form a cloud around us, beckoning us to step through the door to the eternal.
When I had to tell Dad that Mom had died, he said, “Really? She just visited me and told me she’d wait for me in heaven.” I have no doubt their souls connected before hers left this realm.
Only one week later, even after 66 years of marriage, Dad couldn’t remember he’d had a wife, but he said, “Where is that woman I admired?”
I replied, “Dad, you were such a gentleman you let Mom go to heaven first.”
He said, “No wonder I can’t find her.” He waved at the clouds saying, “I’ll be there soon.”
Dad died one year after Mom. Since then I have peace and joy, knowing my parents are restored and reunited.
Alzheimer’s is often shrouded in secrets and privacy, with the goal of preserving the dignity of the afflicted. During the decade of my caregiving, I knew nothing about online support such as thecaregiverspace.org.
To build my own support system, I read every book I could find about personal experiences with the disease. These were few and often written in a negative tone, so I wrote. I wrote what I needed to read, a story of family love, searching for glimpses of sunlight streaming through the clouds of Alzheimer’s.
If you are traveling the long road of Alzheimer’s with a loved one, I hope you can find support from friends, within books, and through sites like thecaregiverspace.org. Thank you for allowing me to share the journey with you.
Whether you’re new to caregiving or a veteran, there are still things to learn about the US healthcare system. This series of videos from Alz Live provides a roadmap. This is part five of an eight part series.
Helping caregivers and families improve interaction with their loved one is the job of an emerging new field of care managers, dementia coaches and patient advocates.
They are valuable team players. You don’t have to carry the entire game on your shoulders.
Going to the Bullpen
Did you know that caregivers have their own versions of relief pitchers? They go by different names, but these champions can guide you along your caregiving journey, help you through the toughest innings and lift some of the burden.
“Advocates help empower patients and caregivers to take more control over managing the disease, set goals, stay safe in the healthcare environment and be a real part of the care team,” says professional advocate and author Trisha Torrey.
Professional patient advocates, many with nursing or social work backgrounds, ensure your loved one’s voice is heard and are there to help you make more informed medical decisions.
According to the Professional Patient Advocate Institute in Gaithersburg, MD, advocates tackle tasks like accompanying your loved one to medical appointments, negotiating with insurers, handling medical bills and paperwork, or doing research to help you better understand treatment and service options.
Money Well Spent
Patient advocates operate outside of the existing insurance reimbursement system, so you’ll pay out of pocket for their services. Yet, Torrey says, many caregivers find that it’s well worth the expense to have a knowledgable, proactive professional speak up, ask questions, resolve issues and reduce some of the day-to-day stress.
Patient navigators guide you and your loved one along the continuum of care, resolve barriers to that care and help to make each step as smooth and seamless as possible, according to Harold P. Freeman, M.D., founder and president of the Harold P. Freeman Patient Navigation Institute in New York City.
Dr. Freeman, Professor Emeritus at Columbia University College of Physicians and Surgeons, pioneered the concept of patient navigation to help low-income patients navigate the health system.
“Navigators work to connect the myriad specialists within the varied systems of care, such as primary care sites and tertiary care sites, so that each can do their job most efficiently,” he wrote.
Even those with health backgrounds need guidance when it comes to their own loved ones.
Barbara Glickstein, R.N., M.P.H., relied on the advice of several geriatric social workers before moving her mother from Florida back to New York.
“As a nurse, I spent a considerable amount of investigative research time talking to geriatric social workers, who were in my own professional circle, and I called some in Florida where my parents still held a residence, to see whether getting around the clock care for my mother — which would be required given her memory problems, and for safety — was a good decision knowing that all of her children live out of state.”
The social workers pointed out the difficulty of coordinating shift-based care from 1,500 miles away and helped Glickstein think through issues like her mother’s quality of life within various care settings.
A social worker’s main priority is maintaining and enhancing quality of life for the older adult and ensuring optimal functioning in the least restrictive environment.
They can connect you and your loved one with various public and private programs. A social worker can help you apply for appropriate services and cut through red tape, assist with forms like advance directives and be a valuable resource to support caregivers.
You may encounter a geriatric social worker within the hospital, skilled nursing facility, home care, assisted living facility or through a community-based service organization.
Managing Geriatric Care
A geriatric care manager will assess a client’s clinical and social service needs, arrange services, and provide ongoing care monitoring. The care manager coordinates assistance from paid service providers, as well as from family and friends, in order to enable a person to live as independently as possible.
Most institutional care managers are licensed social workers or nurses. However, private care management is still a relatively new field and is unregulated in many states, according to the AARP Public Policy Institute.
Jennifer Zajaick, who lives in Wisconsin, says hiring a care manager to help her parents in Florida was priceless. “This person is helping us put the plan together, get us connected with the resources, help us maneuver through insurance, Medicare, helping us with paperwork, helping us find respite.”
It’s important to find a “good fit,” and one who understands and respects your loved one’s goals, she says. “They’re out there and it can take away all the questions of what to do and how to plan.”
The Pro in Your Corner
“What dementia coaches do is try to help caregivers really focus on the issue at hand and not become overwhelmed by everything else because … you feel that you’re now responsible for somebody else’s life,” says Kerry Mills, a dementia coach from Westchester, N.Y.
“We teach families as well as paid care partners or volunteer care partners what is going on with the person who has dementia, what’s going on in their brain, what’s the disease, what’s not,” Mills explained. “This awareness helps family members avoid becoming defensive and judgmental, and not feel that they have to correct every single thing once they start to understand that the brain is just breaking down.”
This awareness helps family members avoid becoming defensive and judgmental.
Coaches also help caregivers better handle these changes by learning different ways to respond and approach their loved one.
“The main philosophy of a dementia coach is that we plan for tomorrow, but we live for today,” she says. “It avoids having people live with the stress of what could happen with the disease; rather, let’s live for what’s happening with your loved one today. So what do we need to do just a little bit differently?”
Mills says coaches differ from other care advocates because “it’s not about me going and doing it for people. It’s about helping them become the care partner that they want to be, to have the satisfaction of doing a great job in that role.”
Caring from A Distance is a website dedicated to the needs of long-distance caregivers for many health conditions, not just Alzheimer’s. It helps connect some of the estimated 6.9 million far-off caregivers with local resources, support services, counseling, a library on issues ranging from financial planning to end of life care, and an online “Family folder” where you can securely store all important information in one place and access from any computer.
Arch National Respite Network the ABCs of Respite Care for Consumers – offers a free downloadable guide for family caregivers on choosing a program or provider, how to pay for care, and other key concerns. Caregivers can also use this website to find a respite program in their area.
National Transitions on Care Coalition: NTOCC has developed information to help patients and their caregivers better understand issues associated with transitioning from one health care setting to another and tools to help consumers as they navigate transitions.
Liz Seegert is an independent health journalist who covers aging and related issues. Follow Liz on Twitter and see more of her work at lizseegert.com.
As we continue to celebrate Grandparent’s Day, we’re tackling an issue that impacts many grandparents and their caregivers: Alzheimer’s Disease.
Taking care of yourself while you’re caring for someone else isn’t optional. In fact, 40% of ALZ caregivers die before the person they’re taking care of. The best way to care for your loved one is by caring for yourself, too. Here are our top tips for how to continue caregiving without paying the ultimate price.
Whether you’re new to caregiving or a veteran, there are still things to learn about the Canadian healthcare system. This series of videos from Alz Live provides a roadmap. This is part one of an eight part series.
People can live full lives, especially in the initial stages of Alzheimer’s disease and other forms of dementia.
“Living with dementia doesn’t mean every day is a misery,” says Mary Schulz, director of education for the Alzheimer Society of Canada. “There’s a lot that can be done to manage the disease, from medication to healthy lifestyle changes and being involved in clinical trials. Even if they can’t achieve a cure, they can sometimes improve day to day living.”
Sheryl Persoon’s mother Patricia was diagnosed with Alzheimer’s two years ago. But she still lives in a basement suite in Persoon’s Coquitlam, B.C., home and remains relatively independent.
She goes to a weekly program called “Minds in Motion” (to exercise her body and her brain). And she takes the Sky Train to visit another daughter in Vancouver, although someone has to meet her on arrival.
Patricia needs reminders when it’s garbage day and her pharmacist provides her pills in a blister pack so Persoon can make sure she’s taking them. But although Patricia sometimes gets up in arms about her children “taking away her independence” and threatens to “move to another country,” says Persoon, “she’s mostly fairly content.”
First Link:The ASC provides an excellent first contact for the newly diagnosed, particularly if there’s a First Link program in your area. First Link aims to help people with Alzheimer’s disease get the support, education and services they need for the duration of the disease.
Among other things, First Link counsellors can refer you to caregiver or patient support programs, offer information about drugs and other treatment regimens and sometimes provide news about clinical trials and promising research. Generally, your doctor will ask if he can pass your name on to First Link so that someone can call you, says Dr. Larry Chambers, scientific advisor for the ASC.
Keep in mind, however, that First Link is not available in all cities and regions across Canada. You’ll find more details about the program here. You can also call your provincial Alzheimer Society office to find out about local First Link programs (for a list of numbers), or Google “First Link” along with the name of your city or region.
MedicAlert Safely Home: This program ensures that if someone with Alzheimer’s Disease or dementia gets lost, they can be safely returned home. They wear an ID bracelet engraved with critical medical information and a 24-hour hotline number that can supply an address and/or connections with emergency responders. The cost is $60 per year. For more details, click here.
Your neighborhood pharmacist: Apart from watching out for possible drug interactions, your pharmacist can provide medication in dosettes or blister packs, enabling you to check easily on whether someone with AD or dementia is taking medication regularly.
Transit services: Toronto has Wheel-Trans. Vancouver has handyDART. Most larger centres have their own version of this service that will pick up and drop off people who are physically handicapped for doctor’s appointments and other engagements.
Help with dementia and Alzheimer’s management or decisions: Saint Elizabeth (a home care provider) offers AskElizabeth at 1-877-787-7432 and has a live chat.
Your Doctor’s Role
Regular monitoring by a doctor is crucial for managing dementia, says Dr. Barry Clarke, a family doctor who specializes in geriatrics in Halifax, N.S. “If I’ve prescribed drugs, I would want to see my patients in about two weeks to check on side effects or behaviour changes that result,” he says.
“Otherwise, I’d generally see a patient every three to six months to reassess their cognitive ability and how they’re functioning – earlier if another issue arises.”
Your doctor will also likely track your blood pressure, cholesterol levels and diabetes (if you have it), as these can have an impact on dementia as well, points out Dr. Clarke. And if you’re still working and you need to apply for CPP/QPP disability benefits or for the federal disability tax credit, your doctor will have to sign the forms.
Depending on your province, you may need a doctor’s letter to get help or care in the home.
The ASC suggests making doctor’s appointments for times when you’re likely to be well rested and at ease, and bringing along a family member or friend for emotional support.
It’s also a good idea for caregivers to track their relative’s or friend’s medications so medical staff have an up-to-date list. “You may assume that medical professionals keep each other informed,” says Schulz. “That’s not always the case.”
Since caregivers may not be able to be with their parent or friend every moment of the day, it’s wise for them to fill out an emergency contact sheet with info about the person’s health conditions and medication use. They should keep several copies tacked to the fridge, or tucked into a purse or wallet in case of an emergency.
You may assume that medical professionals keep each other informed. That’s not always the case.
Act as an Advocate
When Debby Blyth’s mother, Belle, developed dementia in her 80s, Debby always accompanied her to doctor’s appointments. “The doctor would ask how she was doing and my mom would say, ‘Oh fine. I’m just fine,’” recalls Blyth, of Toronto. “I would sit behind her shaking my head and mouthing ‘no.’”
Blyth kept track of her mom’s ailments, so she wouldn’t forget to ask the appropriate questions within the time slot allowed. And she kept track of the doctor’s advice and directions for taking medication as well. If there was a nagging health problem, or she simply wanted a second opinion on some aspect of her mother’s care, she didn’t hesitate to ask for a referral to a specialist.
That kind of help can’t be underestimated, says Schulz. For more tips on how to be an effective advocate for someone with AD, check out the Alzheimer Society’s post on ‘Working with the doctor’.
At all times, whether you are the one being tested, or the caregiver who is acting as patient advocate, speak up: push for answers; push for more time. If you can’t get in to see any doctors or specialists for a while, always say: “Let me know if a cancellation comes up. I’d be happy to come in sooner.”
Watch Out For Concurrent Conditions
If you’re the care partner for someone in the early stages of dementia, keep your eyes open for other health conditions, advises Schulz. Too often symptoms of depression and other ailments get attributed to the dementia itself. “People think, ‘Well, mom seems very sad, but wouldn’t you be sad if you had dementia?’” she explains.
In fact, the most common health problems for people who’ve been newly diagnosed with AD or dementia are psychiatric conditions like depression and anxiety, says Dr. Ron Keren, a geriatric psychiatrist and assistant professor with the University of Toronto. “It may be part and parcel of the disease,” he says, “or it may be because people have insight and they react and grieve for their perceived loss of ability.”
If you’re uncertain whether your relative or friend’s symptoms are simply a result of his AD, or whether they may indicate the presence of depression as well, check out the Mayo Clinic’s post, Alzheimer’s or Depression: Could it be both?.
People with dementia are prone to other medical conditions as well. One study found an average of eight other health problems (or “co-morbid conditions” in medi-speak) – from femur fractures to cardiovascular disease and psychiatric ailments. In fact, the lower a patient’s score on the Mini-Mental State Examination (MMSE), the higher the number of co-morbidities.
To complicate matters, people with AD may have trouble tracking or remembering symptoms, or have difficulty expressing their concerns to the doctor. “Once a diagnosis [of dementia] has been made, it’s a pretty established ‘best practice’ for doctors to listen to family members,” says Schulz.
“That’s not discounting the patient’s experience, but if there’s some cognitive impairment, their insight and their problem-solving abilities are going to be most likely somewhat impaired.”
Quebec offers a 24-hour Health Hotline: 811
Almost every province has a health hotline you can call when a medical emergency arises:
Written by Camilla Cornell. Camilla is a Toronto freelance writer who specializes in health care and personal finance. In her 25-plus years of writing she has been the recipient of two National Magazine Awards and numerous nominations. Originally published on Alzlive.com.
Whether you’re new to caregiving or a veteran, there are still things to learn about the Canadian healthcare system. This series from Alz Live provides a roadmap. This is part one of an eight part series.
In Canada, we have a single-payer health care system, a great achievement.
However, it’s not a market-driven system; therefore it’s not as responsive as it should be.
The Canadian numbers of those with Alzheimer’s will climb. Here’s what it’s like for those who entered the system in the early days of disease awareness.
The gateway to ‘The New Normal’
Jeff Willis’s wife of more than 20 years thought he was just stressed out. The couple and their two children had recently moved from Alberta to Ontario and bought a new home. Jeff, then an artillery officer with the Canadian Armed Forces, was starting a new job.
Some absentmindedness, a degree of distraction and forgetfulness would be in order. Jeff’s new co-workers in Kingston, however, suspected a deeper problem.
Jeff would be late for meetings or miss them altogether. He failed, three times, a standard exam required for Canadian Armed Forces employees “which is so not him,” says Vicky, his wife, from their home in Gananoque, Ont.
“Jeff has three degrees, including a masters in history. For him to fail and shrug it off seemed odd, but we were moving and trying to get settled…” she says, her voice trailing off as if she is still trying to make sense of all that has happened in the past few years.
Jeff, then 47, was dispatched to a doctor on base, and from there, the process (cognitive testing; visits with a specialist) moved quickly. A neurologist in Ottawa made the diagnosis: frontotemporal dementia, or FTD.
Once called “Pick’s disease,” FTD usually strikes people in their 50s and 60s and accounts for 10 to 15 percent of all dementia cases. It’s a form of cell damage that causes the brain to shrink in the areas behind the forehead and the ears, regions that control speech, movement, planning and judgment.
There is no cure or drug treatment for FTD and, on average, people survive six to eight years after diagnosis. Jeff is 52 now, he can no longer speak, and he was diagnosed five years ago.
Once the military had a diagnosis and a reason to release him, they did release him.
FTD is just one of the many diseases that cause dementia
Dementia is a general term for a decline in mental ability severe enough to interfere with daily life. Alzheimer’s is the most common disease to cause dementia, and has become a chronic public health issue in Canada, with the aging of the baby boomer population.
People can live for 20 years after a diagnosis of Alzheimer’s disease, but, on average, people live four to eight years after the onset of symptoms.
As those years pass and function declines, care needs in general – and health care needs in particular – will increase.
For Jeff, military service brought with it health benefits beyond those available to most Canadian employees, like prescription drugs, a few pairs of glasses and dental exams. It also brought quick access to many levels of care. You would think that would be a good thing, but “it was and it wasn’t,” says Vicky.
“Once the military had a diagnosis and a reason to release him, they did release him and we were stuck by ourselves,” she says. “We had to get into the civilian end of it.”
The civilian end, meaning Canada’s lauded and lamented universal health care system, has many enviable benefits compared to programs in wealthier nations. But quick access and responsive care are not chief among its hallmarks.
Searching for the Right Care
“Let me be very clear: I’m a big advocate of a single-payer system, a big advocate of no one having to mortgage their house if their child needs care,” says Francesca Grosso, co-author of Navigating Canada’s Health Care, A User Guide to Getting the Care You Need. “But it’s not a market-driven system; therefore the system is not as responsive as it should be.”
What does that mean to those of us searching for specialists, referrals, second opinions, community services or any of the other resources caregivers need for loved ones diagnosed with dementia or Alzheimer’s?
Like Vicky, we are, to a certain extent, on our own. “That’s why it’s so important for us to be stewards of our patient journey to the extent that we can,” says Grosso. “We are the only constant.”
Vicky quit her job to be Jeff’s full-time caregiver and won a 2014 Heart of Home Care Award for that dedication and love.
But she was rudderless at the start.
“It’s all of a sudden thrown at you that your husband can’t drive anymore. He’s not going to be able to work. He can’t communicate…he talks but doesn’t necessarily process a conversation. If you ask a question, he’ll give you a bizarre answer or no answer,” Vicky says, detailing all the ways Jeff has been affected by the disease.
“He wanders, so he’s constantly on the move. His judgment in eating is gone. If you give him something, he’ll eat and eat and eat without any awareness of when he’s full. He’s incontinent. He’s cold all the time, his nervous system seems to be lacking something….”
eldercarecanada.ca. Founded by Pat Irwin, this advice and action consulting service available across Canada tackles everything from setting up home care, finding a retirement residence and moving you in, clearing the house for resale and keeping in touch as care needs change. They help navigate the health care system, too.
Vicky’s first tentative call to her Ontario Community Care Access Centre, which assists people in need of a host of services (including admission into long-term care homes), was less than helpful. “They said, ‘What do you need?’ and I had no idea,” she remembers. “I just said, ‘I’m not sure’ and the woman said, ‘Phone back when you know what you want.’”
She’s quiet for a long moment before adding: “I was put off.”
Her first vital caregiver supports came not from the health-care system directly, but from its not-for-profit offshoots.
Vicky reached out to the Alzheimer Society of Ontario, which led to support groups in her area (where she learned that the response she got from the CCAC is common). The Red Cross provided a personal support worker for three hours a week.
After about half a year, Vicky wasn’t a novice caregiver and had a clearer sense of what the CCAC could do for her and Jeff. She needed to investigate long-term care facilities, she needed more at-home help, and she wanted counseling, for starters. When she called back, “they were a bit more accommodating,” she remembers.
Jeff recently moved into long-term care, a decision Vicky describes as one of the toughest she’s ever made. She’s not the primary caregiver anymore, but she spends hours every day with Jeff and she has a new role.
“I’m his advocate now,” she says. “It’s up to me to make sure he gets the care he needs, that he’s being well taken care of.”
Hope For The Future: Clinical Trials
Doctors are constantly evaluating new interventions for treating AD and dementia. But finding out about these clinical trials isn’t always easy.
If your doctor is affiliated with a teaching hospital or a university, he or she may be able to advise you of ongoing studies, says Dr. Chambers. But many family physicians won’t have access to that kind of knowledge. “If you want to participate in a clinical trial you may have to do a little research on your own,” he says. Possible sources of information include:
The ASC office in your area – particularly those with a First Link program – may have knowledge of ongoing clinical trials. Or try doing an Internet search for “clinical trials” along with your province name.
Memory clinics often either conduct or know of ongoing studies. You’ll need a referral from your doctor.
The Consortium of Canadian Centres for Clinical Cognitive Research website has information on clinical trials across Canada.
Trial Match can pair you up with clinical trials in the U.S.
ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world.
Clinical Study Connect will notify you about clinical trials, including new treatments and the latest clinical research studies.
Once you have an idea of what’s out there, you’ll need to “be a good consumer” in order to determine the risks and rewards of participating, says Dr. Chambers. Check out this fact sheet by U.S.-based National Institute on Aging on participating in clinical trials.
Our System; Our Future
Annually, Canada spends nearly 12 percent of GDP on health care; only four countries spend more than us (the U.S., Germany, France and the Netherlands)
Still, as well funded as it is, the system often requires very long wait times; coverage from province to province is inconsistent; and stories of Canadians going abroad for necessary treatments are not uncommon.
“Our universally funded, portable health-care system is not universal, nor is it portable,” says Grosso. As effective and enviable as it may be, the system is opaque, tough for lay people to understand and navigate successfully. So, we’ve designed this eight-part series specifically for the caregiver who needs help for a loved one diagnosed with dementia. This is your roadmap.
Written by Jasmine Miller, the associate editor of Alzlive.com, has covered lifestyle, personal finance and health for major Canadian women’s magazines. Originally published on Alzlive.com.
Caregivers regularly put the needs of their family members ahead of their own needs – even to a dangerous extreme. Caregivers have shared with me how they skip meals, forget their own medications, work while seriously ill, and even delay their own treatment. Many of these caregivers feel that they have no other option, often because they can’t afford paid help and lack a support network. However, as we know from Bob’s touching story, some caregivers are hesitant to accept help for a number of non-financial reasons.
Caregivers are at risk for depression, anxiety, sleep problems, substance abuse, and stress-related physical health problems, including elevated blood pressure and compromised immunity. Half of caregivers experience emotional distress and a quarter suffered from clinical depression (source). “Researchers have discovered that Alzheimer’s caregivers had a 63% higher mortality rate than non-caregvers. In fact, 40% of Alzheimer’s caregivers die from stress-related disorders before the patient dies (source).” Your health has a huge impact on your ability to provide care. Declines in the health of the caregiver, not the patient, is the primary reason people with dementia are institutionalized (source).
The majority of caregivers wouldn’t want to give up their role in caring for their loved one. There’s no secret trick that will make caregiving stress free. The big question is:
How can caregivers deal with their emotions and still maintain an identity?
Everyone is different, but here are some tips with what’s worked for us. Share your experience in the comments and we’ll update the post.
Remember who you are
You had a life before you were a caregiver. Your priorities have changed, but don’t give up everything. You’re more than what you do every day. Find small ways to maintain your identity, even if it’s scaled down significantly. Surround yourself with things that remind yourself of who you were, who you are, and who you want to be.
There’s a world outside and life is better when you’re a part of it. Facebook can help you track down friends you’ve lost touch with. A short phone call with a friend can have a huge impact on your day. Sometimes it can help to skip talking about the day to day — especially when your life feels like an endless to-do list — and delve into deeper topics instead.
Stanford researchers found that exercise helped caregivers sleep while decreasing depression, anxiety, and pain (source). It doesn’t have to be a big thing – you can work out at home, while cleaning, or do something low-impact like taking a walk or a bike ride.
Sometimes everything feels like an emergency. You’re so busy reacting that you don’t have time to think about what really needs to get done. Take a step back and decide what tasks don’t need to be at the top of your priority list.
Know what you can change
You know what triggers your stress and anxiety. Some things can’t be changed, but a few can. Try to identify a single trigger you can reduce. Focus on small things. They may not have a big impact right away, but it all adds up.
Caregiving is incredibly demanding. We all lose our cool sometimes. You’re doing your best and that’s good enough. You are constantly forgiving those who don’t live up to your expectations – extend that courtesy to yourself. You deserve it.
Monitor your health
You’re already going from one doctor’s office to another – you certainly don’t want to add more to the list. You know how delaying testing and treatment can dramatically alter your long term prognosis. Track your health. Your health is important, too.
It’s rape if someone is, for any reason, rendered unable to give consent.
Non-consensual sex within marriage is rape.
Donna Lou Rayhons was deemed incapable of making her own decisions and her husband, Henry Rayhons, was aware of that when he allegedly had sexual contact with her.
And yet I feel torn about seeing Henry charged with third-degree felony sexual abuse.
All evidence suggests that the Rayhons had a loving relationship. It seems exceedingly unwise for Henry to have engaged in sexual activity after his wife’s care plan included the note that she could not consent. This was also after her daughters from a previous marriage had complained about his conduct with his wife. However, it’s noteworthy that there’s no evidence that they had sexual intercourse after she was deemed incapable of consent, despite a thorough investigation and a rape kit.
We cannot know what happened between Henry and Donna that night.
Perhaps Henry is a man who feels entitled to his wife’s body, regardless of her wishes or her health.
Or perhaps Henry and his wife had a tender moment. Perhaps she knew instinctively that this is a man she loved and wanted to be close to. She may have demonstrated that she wanted to be physically intimate with him. It seems that they might have touched each other sexually in her bed while they held each other. The evidence isn’t clear. Maybe they didn’t have any sexual contact at all.
We will never know. But we do know that the nursing home staff and Donna’s daughters were doing everything in their power to keep Henry away from his wife.
Henry wanted to keep his wife at home and care for her there, like he cared for his first wife. Donna’s daughters went to court to gain custody and immediately put her in a nursing home. Donna’s daughters prevented Henry from taking her outside, but he got permission to take her to church. They moved her from a private room to a shared room in order to ensure Henry wouldn’t have any private time with his wife. Then staff members told him not to go in his wife’s room because her roommate didn’t like him.
Donna wept when she was moved into the new room and was upset that her daughters didn’t like her husband. Then they prevented him from visiting her for weeks at a time. He was not allowed to be with her when she died. They arrested him after the funeral. Now they are taking him to court to demand he cover the cost of the nursing home.
I certainly don’t want to imagine the details of my parents or grandparents having sex, but I wouldn’t use the ick factor to try to prevent them from acting on their desires. It’s widely accepted that humans need physical affection to survive. Touch improves patient outcomes and nursing homes are increasingly accepting that patients are entitled to express their sexual desires.
There’s no widely accepted method to measure a dementia patient’s ability to consent to sexual contact and dementia symptoms fluctuate wildly from day to day. Intimate contact and physical touch are something we understand long after we’ve lost other cognitive understanding.
Certainly anyone who’s ever tried to get a dementia patient to do something they don’t want to do knows that they are able to express that they do not want something to happen. No one is suggesting that Donna objected to physical contact with her husband. All accounts suggest she was always happy to see him and enjoyed being physically affectionate with him.
It feels invasive to be dissecting the details of an intimate moment between a man and his terminally ill wife. I wonder if Donna felt violated by having her vagina swabbed and investigated by strangers for the rape kit. Did she fight it when they took her to the hospital? I wonder if she was hurt when her husband’s visits were restricted, if she missed the comfort of being with the man she married.
I think it’s pertinent that Henry is a state legislator who decided to not run for another term because of the scandal. The police announced he was facing rape charges in a press release without mentioning that the charges were based on the debate over whether or not his wife could give her consent. A judge denied his request to move the trial out of the county in order to provide an impartial jury.
It does not feel like this case is about protecting Donna. There is no reason to believe we need to protect anyone from Henry. It is suspect that they are devoting resources to investigating this case and conducting DNA tests when so many rape kits sit on shelves around the country. In a country where women can be raped on camera and still have no action taken to pursue their rapists, it seems highly unusual for this case, with so little evidence of sexual contact, to have resulted in charges at all.
This feels like a personal attack on Henry Rayhouns, not an attempt at justice for Donna.
I first heard about Donna Lou Rayhons on my way back from a symposium on death and dying organized by The Institute for Science and Human Values. Ana Lita told Robert Tapp and I about it as we walked back to the train together. It was reassuring that these two professional ethicists also saw the layers of gray.
People with Alzheimer’s don’t revert to being children. It’s time that mainstream America starts having a real conversation about what it means to be able to consent when one or more of the people involved has cognitive issues. Sending a man to jail because he views his wife asking for something to be consent and assumes ‘sex’ means sexual intercourse is not the way to do that.