How do you manage aggressive and challenging dementia behaviors?

How do you manage aggressive and challenging dementia behaviors?

One of the most difficult aspects of being a caregiver is having to cope with aggressive or other challenging behaviors that the person you care for exhibits. Other examples of challenging actions includes hallucinations, verbal abuse, anger, running away, taking clothes off, swearing, agitation, lack of appreciation. One of the secrets is that as a caregiver your response is a key on managing them and can influence the future reoccurrence.

The first thing to do is understand why these behaviors are occurring. The answer lies in 3 areas for people with dementia. People react in this way because of fear, confusion, and pain. They feel helpless or afraid and react to protect themselves. The first thing to do as a caregiver when these difficult behaviors erupt is take a step back and try to understand what is happening that is triggering them.

Dementia directly impacts the brain. It causes people to act in uninhibited, unfiltered ways. It directly impacts our ability to think, find words, or control feelings or what we do. It causes confusion. Take a moment and imagine what that would be like for you. It also tends to exacerbate the personality traits the person had prior to the onset of the dementia.  If you were a mean person before your diagnosis, those men traits may come out in a more intensified way as your condition worsens.

As caregivers we have to remember that people suffering from dementia still need to be respected. They want their wishes to be considered. They also want to feel they have some control over their environment. What may be surprising is sometimes they even regret these negative behaviors. They might not be able to express those feelings but it is important for caregivers to be aware they are there.

Caregivers can do some things to help manage these incidents when they occur:

  • Try to identify the cause of this behavior. Why are they reacting this way? What are they afraid of? What are they feeling? Try to make sense out of the reaction of a loved one.
  • Respond in a calm and comforting manner. Don’t argue. That will trigger more aggression. Don’t force the issue to prove you are right and they are wrong. Nobody will win that battle. Remember your body language. Smile and appear relaxed. Use direct eye contact. Be aware of the tone of your voice and the messages you are sending both conscious and unconscious.
  • Take a moment and imagine not knowing where you are. People often become combative and want to leave a place because they don’t recognize where they are. Try to gently redirect the confused person. Play a favorite song, go for a walk, take out a photo album. Use pictures or other concrete, tangible cues to help them focus and understand where they are at and why they are there. Keep your responses simple and direct. Say something to acknowledge their feelings like “I know it is confusing”, or “we can’t go now because it is very late or it is pouring rain” or whatever makes sense for you. Think about a response that will help them feel safe, cared for, and gets to the root of their fear.
  • Pay attention to patterns of behavior. Do these episodes occur at a particular time    regularly?  Some people experience sundowner syndrome where they get more confused as it gets dark.  Did something happen to trigger these episodes? What happened before they got agitated?
  • Look at the environment. Is there too much noise or stimulation? Is it too hot or too cold? Are there certain people that seem to upset the person receiving the care? Is being in a new place problematical and perhaps confusing?
  • Validate their feelings. Be understanding about what they are trying to communicate even if it is difficult to perceive. Try to collaborate rather than confront the person you are taking care of. If you overtly challenge what is being said or express doubt about it that can trigger an angry episode.
  • Become a master of distraction.  Try to use distraction as a technique to manage negative episodes and outbursts. Think about their favorite foods, hobby, music, photographs, clothing, or television show. Sometimes talking about people they like can ease the tension. Pay attention to what works and have it on stand by when a new outburst occurs.

 

This is very hard but also very important: Try to separate the person from the disease.

Dementia damages the brain and so people experiencing it are unable to control their thoughts, actions, feelings, and behavior as a result. Try not to personalize the negative interactions. Set boundaries for yourself and the person receiving care regarding physical safety. You cannot permit violent behavior that might potentially harm you or the person you are caring for. If this happens consult a physician about how to manage this issue. Take a time out for yourself if you need it. You must take care of yourself as a caregiver. That may be the most important tip of all.

Don’t Let Me Be, Forgotten

Don’t Let Me Be, Forgotten

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.

Elizabeth Bishop


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?”

“Suicide, yes.”

“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.

 


Winter 2015

“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.


Fall 2016

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.


Spring 2017

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.”


Summer 2017

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.

Create a Medications Management Checklist

Create a Medications Management Checklist

My mother was getting forgetful and I was worried sick about her. On the phone, my mother’s conversation was confused and fragmented. Finally, I flew to Florida to assess her physical and mental health. One morning my mother said she wasn’t feeling well. She walked into the bathroom, opened the medicine cabinet, grabbed the first bottle she saw, and took a pill. “What did you just take?” I asked.

“I don’t know,” she admitted.

When I looked at the label, I found that the medication had been prescribed for bladder infection. One problem—my mother didn’t have a bladder infection. This error was the beginning of her decline. Shortly after my visit, I moved my mother to my hometown to be closer to family, and monitor her meds. I was her family caregiver for nine years, and witnessed her slow, steady, relentless decline.

Sandra Ray writes about the medication issue in her article, “Keeping Track of Medications Safely,” posted on the Today’s Caregiver Magazine website. According to Ray, the management of medications includes awareness of drug interactions, throwing away outdated meds, never borrowing or lending medicine, not shopping for meds, taking all medications as prescribed, and constant checking. “Drug interactions are especially a concern for seniors,” she adds.

I was my mother’s family caregiver for nine years. Today, I’m my disabled husband’s primary caregiver. He takes so many prescription meds I can hardly keep track of them. I sat down at the computer, studied the medications list, and created a checklist for daily use. Each morning I enter the date, and print out the checklist. Before I give him any pills I check the label to make sure it’s the right medication. I put a checkmark by each medication as he takes it.

This simple system works well for me, and may work for you. This customized checklist makes tracking meds easier. What should be on your list?    

  • The current date
  • Name of the medication
  • Generic name of the medication (if one exists)
  • Dosage (number of milligrams, one pill, one teaspoon, etc.)
  • Reason for medication (high blood pressure, skin rash, cough, etc.)
  • Stop date if there is one

Free and fee medication checklists are available online. Some lists ask you to describe the pill—pink, white, yellow, etc. This sounds like a good idea, but it can lead to trouble because many medications are the same color. If you choose to describe the medication, I would add a qualifier, such as oval white pill, white capsule, or large, round white capsule.

For quick access, I write the name of the medication on the top of the bottle with permanent marker. Of course, I make sure the right top gets on the right bottle.

Safe medication management is an issue that pertains to everyone, not just care receivers. We live in Rochester, MN, home of Mayo Clinic, and go to Community Medicine for our health care. My husband’s last appointment was preceded by a consultation with a pharmacist, something we hadn’t requested. “Why are we meeting with a pharmacist?” I asked. According to the nurse, Mayo devised this plan because so many patients were taking medications incorrectly—skipping doses, taking extra pills, or even stopping pills.

A loved one’s health hinges on safe, ongoing medication management, and that’s part of your job. Create or download a medications checklist today!

What does caregiving feel like?

What does caregiving feel like?

When people talk about overcoming disease or disability to live an incredible life, so often the caregivers are left out of the story.

Many caregivers don’t identify as caregivers — we’re so absorbed in the needs of whoever we’re caring for, we forget what it’s like to be us. We take our own work for granted sometimes.

What does it feel like to be you?


Exhausted. Learnt bucket loads of patience over past 8 years. Lonely. Really grateful for current medical schemes in Australia. Sad for those without same privilege.

Janet


I don’t think people want to feel the way i do.

To be me is to be sad, angry, depressed, lonely, irritable, short tempered, sometimes confrontational with strangers, cold hearted, withdrawn and just don’t care about anything and anyone.

This is only for this week. Never would’ve i thought that being a full time unpaid caregiver to my parents for over 21 yrs would be this hard.

Bob


How does it feel to be me? Wow, that’s a challenge. Most of the time, I really like myself. I like the fact that I don’t cringe in the face of adversity. I meet it head on. I believe firmly that there’s no such thing as a stupid question. I also believe in repeating my question to many people in order to get an understanding of the best course of action for my family and myself.

I have learned that taking care of myself is as vital as taking care of my loved ones. I have made conscious decisions in what I eat every day. I take the time to walk, often with music that makes me smile. That’s a very important thing too. Music must be able to make you smile. I avoid music that makes me frown. I see a counselor to take care of my mental health too. I am not afraid to admit this need.

I know without a doubt that I was blessed with a kind heart and do my best to be nice to others every day.

Mimi


I’m a partial caregiver to my married son in Cal. I’m in Dallas. He’s post 2 liver transplants 17 yrs again at 16 yr, severe ulcerative colitis and depression with suicidal thoughts. His wife has trouble understanding so he calls me. I’m an RN also. I’ve flown out when he’s in depression crisis. It’s very frustrating because of distance and stubbornness. Feel helpless over phone.

I’m caregiver also to my 30yr old daughter who is 3 yr post third liver and kidney transplant. She shattered ankle over Xmas in car wreck had 3 surgeries and 4 admissions. That just added more stress. This daughter doesn’t work goes to school part time, too afraid to do too much alone, no friends, no social life and messy to boot. She gets SSI and still on our insurance which is blessing. But she’s my biggest headache. My other two younger daughters have been out on their own since college.

Then they diagnosed my husband last summer with possible dementia. He’s 64 and retest this summer. Been told it might just be him. God willing.

I had to quit work as home health RN because it was too much stress to caregiver at work and at home. I feel lost very alone and all I want to do is complain to people. I go to counselor, take anti depressants and anti anxiety pills. Sometimes I just want to scream or curl up in a ball and sleep. Have other health issues myself as we all seem to and I feel like my tolerance is slim.

Becky


No matter how much support I receive, I still walk this path alone. So I would say a general feeling of isolation is how it feels to be me.

Melissa


I am exhausted, overwhelmed, and frustrated some days and some days are so very rewarding. I do it for love.

Barb


Before I became my disabled husband’s caregiver, I was my mother’s family caregiver (9 years), and my twin grandchildren’s caregiver and guardian (7 years). I am my disabled husband’s caregiver now (close to 4 years). From this experience, I learned that I need to keep doing what I love, and that is to write. So I’ve continued to make my writing career a priority. This decision led me to write four books for family caregivers. Another book, about raising grandchildren, is in production now. Writing makes me happy and when I’m happy, my husband is happy. He is my biggest fan and wants me to keep writing. I will admit, however, that two roles—caregiver and author—keep me jumping. Writing can be difficult because I’m constantly interrupted. Thankfully, I am a disciplined author and have good work habits. These work habits carry over to caregiving.

Harriet


It’s an honor to be able to be my wife’s caregiver and I take pride in how I take care of her. I appreciate the kind words from family and friends about how well I do with my caring for me wife.

On the flip side though, I’m tired and I don’t know what my identity is anymore. I’m so wrapped up in her needs I admit that mine take a back seat, in fact they’re in the trunk. Please understand that I’m not bitter, she didn’t ask for MS.

I know that I should get some help, but in my mind who’s going to do it, and better yet who’s going to pay for it. So I’ll do what I always do and keep moving forward, I realize this is on me and for me to get the help I need. I just wish that we can go back before MS and stay there, when the most difficult thing to do was to figure out what to have for dinner. Thanks for letting me vent a little.

John


This is how it feels to be me.

I first became a caregiver in 2011. When I started I was in a size 10. Now I’m in a 14/16. Stress shows in my face and body. I look in the mirror and don’t even recognize this person. I was married and just became a divorced woman.

I have found out that I cannot depend on my siblings to help take care of our Mother. They have not stepped up at all. I feel angry and resentful. But I also feel strong because although it’s the hardest thing I’ve ever done and I’m doing it.

My Mother battles a horrible disease and it’s in my face everyday. My siblings have not seen one ounce. I know I’m doing the best I can and I know I’m helping my Mother that once helped me. You never know what you can do if you don’t try. And you do whatever it takes when it gets tough.

God has not abandoned me but people have. It is very isolated when caregiving and you are no longer “available ” to others the way they expect or want you to be. You will sacrifice much. And it’s hard to find time to take care of your own needs. But I’m working on that.

I plan to find time to go for a walk everyday. And to drink the water I need everyday. And lose the stress weight. Cortisol stress hormone please stop attacking me. I’m already battling LBD.

Anonymous

Creativity and Dementia

Creativity and Dementia

I recently visited my husband at the long term care facility where he now resides and I was impressed by his latest creative work of art. This time he had all of the things out of his bathroom cupboard, his mouthwash, hair brush, plastic glass, soap and toothbrush arranged in an interesting manner on the counter by the sink in the small “kitchenette” area of his room.

It looked like a small city scape, I thought, with the brush acting like some kind of bridge between the glass and the soap. The mouthwash had the toothbrush carefully balanced horizontally on it in the background.

“Well this is nice” I said. “Why is all of this out here?”

I received the usual response, which was really no response, as he cannot effectively articulate what he was trying to do with the items. This was not the first time I have arrived to find modern day sculptures around his room. Often the Styrofoam cups and plates that snacks arrive on are stacked in an interesting and sometimes gravity defying pile on the headboard of his bed. The toilet paper rolls and the paper towel rolls (full ones and empty ones) always seem to need to be balanced upon one another in a precarious manner.

My husband has vascular dementia and that has robbed him of the ability to remember his friends and family. He knows that I am his wife, I think, but he does not remember my name. After caring for him for several years at our home it became a matter of safety for him and sanity for me that he be moved into a long term care facility.

He had wanted to be an architect when he was young but circumstances led his to being an accountant for over 40 years. I can only guess that the creative part of his mind now wants to express itself when other forms of communication have become difficult.

He also amuses himself by re-arranging the various stuffed animals that occupy his room. There are two stuffed dogs – a black and white one that has long ears and a small white poodle replica. These dogs are often in unique positions and are sometimes on the bed in the middle and sometimes they are tucked into the top. The smaller poodle dog can be found whispering into the larger dog’s ear or on occasion it is the other way around. The dogs may be sitting back to back on some days or they might be in a face to face position. They are usually on the small table that is in the corner of the room and my husband encourages me to say hello to them when I enter the room. He often asks me what their names are and I tell him that their names are Spot and Fifi.

spot and fifi

Recently the dogs have been joined by a hand knit bear that is sporting a pair or red pants and a multi coloured sweater. The bear does not seem to interact with the dogs but rather enjoys sitting on his own chair or sometimes he is on the headboard of the bed. I have no idea where the bear came from but he seems to be a permanent resident now. I now have to state his name each time I arrive – I have decided to call him “Beary”.

I find it quite amazing that he is able to entertain himself this way when there are so many other things he can no longer do. I would never have thought that he would have anything to do with stuffed animals as I am sure his sense of masculinity would have precluded that when he did not have this disease.

My husband does not want to interact with the other residents doing crafts or exercises but he does seem to like his activity of using items in his control to build structures. He shows no interest in the Legos or the Lincoln logs out in the common area.

If you have someone in care I would recommend that you try to find something in the creative vein that they might like to do. It could be as simple as putting photos in and out of the photo album with the pockets that you slide pictures into easily. If you have photos of family members or things that the resident likes such as golf pictures, landscapes or cityscapes, dogs or cats or perhaps certain types of cars. It might help to write on the back of each picture in large printing who or what the pictures are. A fun activity could be to sort out all of the people pictures from the pet pictures.

Perhaps when you visit you can empty out a drawer and the two of you can fold the clothes and organize them and put them back in the drawer. I know that my husband is a very tidy folder and we can spend some time getting that task done. It seems to give him a sense of accomplishment.

I also have brought a target and some bean bags that you can throw through the holes in the target. We do not keep track of the points but it is always fun to see how far away we can put the target and hit the holes with the bean bags. Even more interesting is finding the bean bags for this activity since they sometimes end up in very different places from where they were last placed. A good game of “Hunting for the Bean Bags” usually starts this activity.

If you have a person who used to like to knit then a large ball of wool and large needles could be brought in and the first couple of rows done on a simple knitting pattern, I saw a show where a person got all kinds of seniors in care facilities making squares of knitting and she then felted those squares and made them into purses and other things.

On my next trip I plan to bring in some poker chips that are various colours and have them all mixed together in the box and ask that my husband sort them out into the proper colours on the rack they go in.

If you have a person that you care about in a long term care facility with dementia then I would encourage you to try to find their creative side. It may surprise you to find out how they can still be imaginative. Dementia may have robbed their mind of many things but it seems it cannot quite put out the spark of creativity.


You can learn more about Lee’s experience caring for her husband in Dementia in the Family.

Is there a better term for caregiver burden?

Is there a better term for caregiver burden?

You’ve heard the term “caregiver burden”, right? It’s the stress and strain that comes with caring for someone who is ill, elderly, or disabled. Lots of people don’t really like it, since it can easily seem like the person you’re caring for is a burden.

I was thinking about this while reading the story of The Perfect Servant. She’s really honest about what a burden caregiving can be, but it’s also clear that the love her and her husband share is incredible. We don’t want the person we’re caring for to feel like they’re a burden or to further stigmatize their condition.

Is there a better term? How can we talk about the stress of caregiving without placing blame on the person we care for?


I am reaching a new level of care for Deb as she is incontinent of bowel and bladder to the point that she has lost all control. Her MS is putting her body thru some new changes. Her fatigue is such that a lift may now be getting close. My own ability to care for her as a 66 year old man is being called into question. I bring this up to address the word “burden”. Is it now a burden to care for a woman I have been married to for over 32 years, who has always given more to me than me to her and has been in a w/c for over 7 years and I am her nearly full time caregiver. To say it is not burdensome physically and emotionally is naïve and dishonest. However, this burden is filled with that intangible gift of love we have been given and I want to share and honor that with her.

Jerry



It’s like I have been trying to instill in my son, there can’t be blame. It’s an awful word to start with, when you consider the meaning. Things happen, it’s called life. It’s called what God and Jesus hand to you and expect you to do right by. I firmly believe in both God and Jesus. God picks who we are, boy or girl, short or tall, autistic or not. Jesus gives us our heart and soul, and expects us to love unconditionally always.

My son didn’t ask to be autistic any more than my dad asked to suddenly grow weak and unable to take care of himself 100% of the time. I certainly did not ask to deal with chronic pain, PTSD, have my neck fused, and more. Blaming or saying someone is a burden disrespects God, Jesus, and the person who has become dependent on others in daily life.

I would encourage someone to seek counseling because it really helps. If not counseling, find that someone who would not mind being a sounding board. Not to give advice as much as there to listen to the struggles, the
fears, the joys and the frustrations of being a caregiver.

Most important of all, find that time for yourself. 15 minutes here, 15 minutes there. Read, listen to music, watch a favorite tv show, it doesn’t matter as long as you are giving yourself time to focus on something other than the person you are caring for. Balance is key to not feeling the need to use the word blame.

Mimi


How about “moral responsibility”? Caregiving applies to the circumstance but the heavy feeling of a burden comes from outside the role of a caregiver. These emotions stem from a desire to believe in hope for humanity. That no matter who or what we are, when faced with a need, at the stake of human condition, we will take action… We care cause we relate to the fact that might easily be the one in need and I hope the same moral conflict in others will still exist and someone will be kind enough to help me!

Ashley


As a caregiver to a loved one, there are different levels of emotion before the sense of burden comes along. And once it does, then there’s guilt for feeling burdened. That comes from not getting those much needed breaks for ourselves.

Teresa


There is a wide range of emotions that come long before one falls into the ‘burden-guilt’ trap…but something we don’t talk about often for caregivers is the need for self-care. I was fortunate enough to hear an interview with a caregiver (on CBC – Sunday Edition) just a few months before my caregiving journey started in earnest. I learned a few things: the importance of accepting help and the importance of taking time for myself. I’ve only faltered when I didn’t do one or the other (or both!)

Honestly – I don’t feel burden or ‘why me’ … I feel blessed that I have so much support in my life. For my husband, I only feel love. As much as I’ve been his caregiver, he is my rock in so many other things.

I know I am so very fortunate. and for that I’m grateful. For me, there is no burden, just love and gratitude.

Sylvia



I am a nurse practitioner. In the field of nursing we call it “burnout” when the burdens of caring and providing for others fatigues you to the point of exhaustion and inability to often meet your and/or your family’s needs.

Donna


It is a challenge.
It is a burden.
Above all of that it is a responsibility.
Caregiver Responsibilities.
We are the capeless heroes that never get a casserole.

Kim


I have given care for years to various ones. First as an RN and then as a mom who had a terminally ill child, then, my parents. Still in the midst of caring for my mom. I liken the fatigue I felt with my son, as PTSD. I didn’t realize it at the time. Burnout is another term I’ve used. Fatigue is yet another term. I don’t think I’ve ever placed blame on the person I’m caring for, but more on myself for not being able to meet all the challenges.

I love what I do, I would not want it any other way. What we, as caregivers extraordinaire, need is the ability to find time away to regroup and recharge. We need the ability to not go broke in caring for our loved ones. That alone, would remove stress from our lives. Tax laws should be changed to give us a break on this. We are keeping our loved ones from becoming a burden on society on the tax payers dime. I try to remember that I am serving my Lord and Savior as I care for my mom. I am honoring my parents, as is commanded. May God bless each of you, as you care for your loved ones.

Sherelyn



It does seem like any concern is a complaint when it is not. It is just a plea for how something can be done better or easier for both. This is definitely a learning process but one that has no room for error on either side.

Diane


I place all the blame on myself, why not everyone else does. I’ve been taking care of my parents for 20 plus years, I even bought the house next door to them for convenience.

My dad passed away last March on my mom’s birthday so now it’s just mom. She has COPD and its very bad. She only goes on 3 rooms of her house and has anxiety issues that prevent her from leaving her house, period. This is a constant battle with her because she does not allow me to be gone because she will panic. My family is headed out the door at the moment to go on a much needed fishing trip and I get left behind. I do not resent my mother for this.

I am sitting here waiting for her to ring the wireless door bell I have for her letting me know she up so I can do our daily care routine, I do not resent her for this. I love my mother and would never leave her in a million years, but it’s exhausting at times because she has no zest for life, all she wants to do is smoke (she’s been quit for a while now ) she asks and I say no, she resents me for this, I feel guilty because I am not giving her what she wants, it’s my fault she’s not happy and she lets me know about it to, this is where I resent her attitude towards me.

If I give on, she will end up in the hospital just like every time before and its my fault, my family says so, and so do I. Its not burn out exactly, it’s not knowing what to do when she gets like this and no matter what choice I make it comes down to her health or her happiness.

Genie


My burnout and frustrations came from family not working with me as a team to help take care of Mom … And accusing, ridiculing and blaming me for the dysfunction.

Linda


I’ve been a caregiver for six years for my,now, 91 year old mom. Once she said to me; “I feel like I’m a burden to you.” I knew that denying that would be a lie so I said in a soft and loving way; “yes, sometimes caring for you is a burden just like I was to you when I was young and you were raising me as a single mother. But that doesn’t mean we give up just because something is challenging. Our love, commitment and loyalty means we stay and we persevere. My dog got me up three times last night and that was a burden but that doesn’t mean I give her away or that I don’t love her.”

My mom nodded and replied; “I’m so grateful to you.” And my response was; “I love you and I’ll always be here for you.” Something my two older sisters know nothing about.

Kellie


Caregiver stress syndrome is a much better term. There are degrees of it just like any other syndrome. Burden allows the greater society to continue to ‘blame the victim’. We blame the person who took on the role of caring for another person instead of providing adequate services and supports.

And for those who don’t want to be called caregiver: this is why we do it: in order to access services and supports we have to call the person giving of their love, time and effort something. The political will to support ‘grand daughter’ or ‘husband’ or ‘wife’ doesn’t exist in the US.

Those of us in caregiving research often wore the same shoes and walked the path. We use the term caregiving or care partner or dyadic care in order to try to get the local, state and federal funding to assist those who provide care. We don’t do it without thought.

Jeananne


It is what it is. And it’s not the patients fault, but we have to acknowledge the true weight of what caregivers go through.

Michaela


You can come up with something a little more tactful, yes, but there’s no positive spin on what it really is.

Penny


 

What does it feel like to be me?

What does it feel like to be me?

What does it feel like to be me?

The first word to come to mind is “full”. Frustrated is a close second. My 91yr. old mother has lived with me for six years. Her dementia has stolen her reasoning, memory, logic and ability to track what I’m saying. Some have told me that “caregiving” is my identity.

I don’t want it to be. I want it to be what I do and not be so encased in who I am.

What does it feel like to be me?

Sad a lot of the time as I get covered in anticipatory grief. The grief ebbs and flows in phases and I’m just now realizing that those phases will pass. I know life will have challenges and struggles but I can choose whether to be miserable or not.

What helps is focusing on the moments of joy I have with my mother today or in a brief moment. Those moments will be kind to me after she’s gone and bring me solace.

What does it feel like to be me?

Tired. Mentally, physically exhausted. I try to make time to do what refreshes and restores me, like gardening and going to church, lunch with friends, a massage, the gym, weekend away with my husband and the kids. It’s difficult when I’m so fatigued but once I push myself to do it, I always feel better.

What does it feel like to be me?

Lonely. Even when I’m not alone. Few people in my life truly understand what the experience of caregiving is. Friends ask how my mom is doing but rarely ask how I’M doing. And there are those times when I, too, get tired of hearing my own voice expressing my frustrations and irritations. Sometimes the loneliness is a loss of connection with myself. I’m an introvert and it is vital that I have time alone to reconnect with myself, my thoughts, to process what’s happened or be distracted from the chaos and unpredictability of it all. Those days to reconnect with myself are far and few between.

What does it feel like to be me?

Grateful. At the most challenging time in my life (caregiving for my mom) I experienced the greatest blessing in my life–I met and married my husband. My mom’s friend will take her for a few days to give me a break and I’m so thankful to her for that. I”m grateful for having good health to be able to continue caring for my mom. I’m still practicing acceptance for this struggle and pray for patience and stamina. This experience has brought me back to a connection with God and I don’t think anyone could be a caregiver without a connection to some higher power.

Thank you,
Kellie

Terminal Determination

Terminal Determination

The saga began Wednesday morning in March 9. Hours of screaming. Calling for the ambulance. Emergency room admission. Morphine drip for the pain. CT scan. Calls to calm his hysterical mother. Five-hour surgery I’d been told would just be a couple of hours. Surgical ICU for a week. Steve was put in an induced coma so all of his strength would go to healing. I sat in the alcove in his room and watched him for days; swaddled in white linen with tubes coming in and out of every part of him.

On Friday afternoon, our gastro doctor told me to go home and get some rest. His exact words were “Steve is circling the drain.” What? “He’s gonna have to fight to pull through the weekend. If he does, we’re in the clear. And you’re going to need your strength.” I couldn’t breathe. It was like I was punched in the gut. All the air was knocked out of me. I must have gone straight into a state of denial because “I knew” that Steve would pull through. I wouldn’t have it any other way.  I’d spend my days sitting beside him as long as needed to secure his complete recovery.

When he was rushed to the hospital, the doctors thought it was acute appendicitis. I told them he’d been self-medicating for diverticulitis for a week and the surgeon discovered it was peritonitis from his CT scan.

I’d sit and knit in his room from 10:00 a.m. until I left about twelve hours later. The nurses loved me. We’d bonded and I was a great help to them. Steve’s bed was right in front of the nurse’s station and the room had a little alcove I could hide in after visiting hours were over. No one ever kicked me out.

Steve looking like he doesn't have a care in the world, despite a terminal cancer diagnosis

On Friday morning when our internist was doing his rounds, I was already at the hospital. He needed to speak with me. The CT scan the surgeon had taken on Wednesday was shot a little high and shown cancer in the middle lobe of his right lung. After I caught my breath I conveniently “forgot” this until Steve had recovered from his surgery, was home healing and we began making visits to all of his physicians.

First the surgeon—Steve had done beautifully and was given a clean bill of health. Then his gastroenterologist—clean bill of health with instructions to change his diet and begin exercising. Finally, we went to our internist who also gave Steve a clean bill of health and told Steve to get dressed and meet him in his office—which was par for the course.

i look less relaxed than steve does. I knew I was going to have to live after he passed and create a new life for myself

But this time, he told us that a cancerous growth had been found on the middle lobe of his right lung and that he needed to find a surgeon and oncologist as soon as possible. Now that the wounds were healing from his surgery, it was time to address the cancer.

A big part of caregiving for me was having the ability to go with whatever was thrown at me. The 12 Step program’s Serenity Prayer—“God grant me the serenity to accept the things I cannot change, courage to change the things I can and the wisdom to know the difference,” saw me through.  It was that simple; that cut and dried. With whatever “Higher Power” I believed in, the prayer made perfect sense. It made it possible for me to go with the flow. To do all I could do to affect change acknowledging there were some things beyond my control.

That was the key. I didn’t relinquish control, I just needed to recognize when things were beyond me. All I could do was my best and then let go.

The word “cancer” rang out as a “death sentence, “ but I went to work finding the best oncologists and surgeons I could. We spent about two weeks interviewing leaders in the field in New York City and made our choice. We learned that if the middle lobe of his right lung was removed that Steve would be fine—for a while—but that this cancer would return and ultimately kill him. We heard that from eight different specialists.

Going through surgery for peritonitis and waiting for that to heal to be able to go through surgery to reverse the temporary colostomy he had needed to be able to wait for the reversal to heal to be able to have the middle lobe of his left lung removed took six months. After that, we’d be able to have peace of mind for a while.

Being told you’re going to die from cancer—eventually—doesn’t mean you just sit back and wait for it to take you. First there were scans every three months, then every six months and once we’d gone a year and a half cancer free, we got a little cocky. I was still doing research on new protocols, but with every visit to the oncologist we’d be told why “That’s not an option for Steve.” That didn’t stop me from looking for the best care available. After Steve’s second six-month scan, the cancer was back.

This, of course, did not make us happy, but we kept on plugging doing all we could to extend Steve’s life. Surgery in Boston (where his original surgeon had relocated), chemo and radiation in New York. It was his life but I was the one who was going to be left. From the time of diagnosis I knew that this day would come and other days like it, when we’d be told this or that protocol wasn’t working any more and the cancer was spreading.

In September of 2010 he started pinpoint radiation therapy. The cancer had spread to his spine. After this, there was a new chemo regimen. The one major blessing in all of this is Steve never looked sick. He never lost too much weight. He never lost his hair. His complexion was always ruddy so he never looked pale or sickly. For all the world, he looked like a healthy man and was treated as such.

Steve after the first three surgeries, but before the fourth

Steve did a weekly TV call-in show for 35 years and he had many regular callers. Because he looked so well, not one of them knew he was ill. For one hour every week, he could feel free of the disease. He could be “the old Steve.” He did his show until two weeks before he died. It was his best therapy.

Waiting for chemo sometimes took hours. We’d have to go through the motions and have Steve’s vitals taken and then sit until someone could see us. When his doctor saw him, Steve asked “How long do I have?” and when the doctor told him “Maybe three months” I didn’t believe him. I lived with this man. I knew whatever was going on, Steve had weeks left to live, at best. While he took his treatment, I slipped away and found a P.A. who knew me. I confronted her. “Tell me the truth. I don’t think he has months to live. I’m his wife. I’m the one who will be left. How can I prepare for what I know is coming if I don’t know the truth? I need to know. I won’t tell him.” She turned to me and said “No more than a month. Maybe less.” At last. The truth, though ugly and sad, was something to hold on to.

About a week later, the oncologist told us “The cancer has gone to your spine. There is nothing more we can do for you except make sure you’re not in pain.” I’d heard those words before right before my father died. “We’ll make sure he’s comfortable” was another familiar comment. We left the doctor’s office, went home and cried together. We’d both done all we could and both given it our all. The fact that we had gotten to a place in our relationship where there was no blame being assigned, much appreciation and open expressions of love. I was going to have to live with the remnants of terminal cancer, but I could live with myself.

All my work and efforts on his behalf had just been part of the natural order. Steve let me know how much more capable I was than he had ever realized. He let me know that the thing he felt worst about was leaving me alone. There was so much left to be shared. He was about to turn seventy. About to begin to take it easy and travel to all the places we’d dreamed about.

Of course the idea of what my new life would be like had crossed my mind. I felt no guilt thinking about the future without him. After all I’d done everything within my power to keep him alive and we both accepted there would be life for me after Steve. But I was grateful; grateful that he’d never really looked ill; grateful he’d had it easy compared to some other cancer patients we knew; grateful he wasn’t in pain. But when the dementia took hold, I knew it was a matter of weeks or even days. I hated the thought of living like this for too long.

My Steve only made brief appearances now and then. From midnight ‘til dawn I lived with a paranoid maniac. He slept during the day—pain meds exhausted him, as had his episodes of dementia the night before. Of course he didn’t know what was going on, which made it all the more painful for me. This brilliant man was seeing spacecraft outside out bedroom window; or Vietnamese women with cats padding about the front of our apartment, stealing things. Days later he was hospitalized and ten days after that he died.

I’d learned to “play it as it lays.” It was the only way for me to cope. I’d done my very, very best and had zero regrets. Steve’d given me permission to live a good life after he passed. He’d told me who I couldn’t date. He’d told me to ask for help when I needed it. If he couldn’t be there, he wanted me to feel taken care of nevertheless. I’ve followed his instructions. I have a life. I try to give back. I have a mission. I have wonderful memories; but I have a future too. Steve wouldn’t have wanted me to waste it.

How did we become family caregivers?

How did we become family caregivers?

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.

Andrea


Not a choice an obligation to the ones we love

Maggie


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.

JeanAnn


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.

Barbara


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.

Kathy


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.

Duane


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.

Peggy


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”.

Marj


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.

Douglas


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.

Harriet


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.

Bruce


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. 🙃

Melissa


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.

Theresa


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.

Linda


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!

Lisa


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.

Carol

Caregiving and resentment

Caregiving and resentment

Resentment seems to be a regular companion for caregivers.  It comes in flash points when we feel presumed upon, undervalued, and unappreciated. That resentment, however, cripples us as caregivers far more than it negatively affects others.

A pianist for even longer than my three decades as a caregiver, I often find myself at the piano working out the kinks in my soul. The music won’t come, however, if my fists remain clenched with resentment. Something beautiful flowing from my hands and heart requires opening both, along with a willingness to let go of resentment.

Each time my hands open to play the piano, it signals to my heart that it’s okay to release grudges, slights, or bitterness.  It’s not easy, but the music flowing from that decision is soothing and healing to my soul—as well as listeners. We all possess the ability to make and enjoy beautiful music and art in our own ways. As caregivers, that beauty is not limited by the harsh circumstances we face and carry, but rather limited only by our unwillingness let go of resentment.

A goal I’ve set for myself as a caregiver is to one day stand at a grave. While I can’t guarantee outliving my wife and ensuring she and our sons aren’t left to deal with her massive medical challenges without me, I can, however, guarantee a better chance of doing so if I live a healthier life. Part of living a healthier life is avoiding carrying resentment. I don’t want to stand at that grave with clenched fists resentful at her, others who didn’t help the way I wanted, myself, or at God.

Letting go often starts with the simple act of opening one’s hand. 

The heart will follow.

Second guessing family ties

Second guessing family ties

When my boyfriend came out to his family, his father attacked him. That was nearly 20 years ago now.

For a long time he’d make attempts to get in contact with his siblings or his mother every couple years. They never went well. They were only willing to welcome him back into the family if he renounced his life and married a woman. He would end up having to block their phone numbers after their disappointment turned into threats and condemnation.

A few years ago, he decided he wasn’t going to contact them any more. We’d gotten married, bought a house, adopted a dog, and surrounded ourselves with a great group of friends. We had our chosen family and that was enough.

Last year he started having vague symptoms that something wasn’t right. He went to the doctor a few times before things were taken seriously. We knew something was really wrong, but weren’t surprised that his generic complaints weren’t getting him access to the tests we thought he needed.

Finally we got a diagnosis. It wasn’t a “good” one.

We thought we’d put the family issue behind us. But now we’re back to mulling it over.

Do we owe them a last chance to make amends? Does he owe himself one last opportunity to have his family’s support? Or is it just inviting trouble into our lives?

While we’re legally married, we’ve heard enough horror stories of long-estranged family members suing spouses for assets or fighting to take back POA. The potential for danger seems high.

But I know he’s always held out hope that one day down the line they would learn to accept him. There is no “one day.” It’s now or never.

Is becoming a caregiver a choice?

Is becoming a caregiver a choice?

Becoming a caregiver just happened

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


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This advice on ALZ changed my life

This advice on ALZ changed my life

There’s a lot of advice on how to care for someone with Alzheimer’s without, well, losing your mind.

Not a lot of it works.

I was a very earnest child. My poor parents had to deal with me taking things very literally. I still want to correct every mistake and misunderstanding. Luckily, now I have a lot less free time to waste on hopeless battles.

This attitude doesn’t work very well for life in general. It certainly doesn’t fly with someone who has Alzheimer’s.

Then I read an article about a woman whose mom moved in with her and her husband after her Alzheimer’s progressed. Her and her mother butted heads, but her husband and her mom hit it off wildly. This caused its own problems, as it can be tough to watch your husband become your mother’s new golden child.

How did he do it? He loved improv and took every moment with his mother-in-law as a new skit, a new adventure.

Something clicked for me.

I’ve never taken an improv class, although it’s on my list of things I’ve been meaning to do for years, next to learning Spanish. I’ve circled the improv classes in JCC fliers more times than I can count, but I’ve never actually signed up. But, I did have an elementary school teacher who was obsessed with improv and taught our class the basics.

And, thankfully, you can learn just about anything online.

My grandmother, unfortunately, wasn’t as fun as the woman in the story. Most of my time was still spent facing accusations and demands, but at least now instead of feeling insulted, I was working out the next best line. How could I distract her long enough to change the topic? Could I manage to make her laugh? (Usually, no, I could not).

Even if she wasn’t having a good time, my experience was much improved. Instead of trying to convince her that this kitchen that looked just like her kitchen was, in fact, her kitchen, I humored her. I made up elaborate stories about where we were and why it looked so much like her house. There were all sorts of zany reasons why we were waiting there, but don’t you worry, you’ll be heading home shortly. And then we’d get her bundled up and do the equivalent of spinner her around in a circle before a game of hide and seek so we could take her “home.”

I did particularly enjoy her stories about her trip to China as a young girl (not a real thing), the other people she met while she was on her cruise (she was in a nursing home for respite), and her complaints about her boss (her feet were bothering her from standing all day in high heels, although she was bed-ridden and had retired long before I was born).

It made the days a lot more fun and a lot less frustrating.

I never could quite get the rest of the family on board. Everyone else was still trying to convince her she was at home, those were her red shoes, that was FOX News on the TV, they already fed her dinner, and they were her daughter/granddaughter/neighbor. You can’t win them all.

But it worked for me. Maybe it’lll make your day a little easier.

How to Efficiently Make Over Your Closet

How to Efficiently Make Over Your Closet

Let’s face it. We are regular people who do not live the lives featured in glossy magazines. We aspire to be neater, but to achieve this optic we would need to subsist on six interchangeable outfits of monochromatic khaki and white. What about winter clothes? What about navy blue? How can we whittle away our wardrobes to better suit the life we lead?

After moving fourteen times over the past thirty years, I have discovered I have a knack for the packing and unpacking process. When my college roommates marveled at how I organized, they often asked if I could help sort their dresses, tops, and sweaters, too. As I have aged, I have found organizing to be my great stress release.

This closet call for order has continued for decades because many of my moves involved tricky closet negotiation. An unforgiving space requires a “can-do” attitude. I once gave up a generous walk-in closet for a cute neighborhood with an “I Love Lucy” sized closet. The single shelf above a wooden rod that spanned the same narrow width as those 1950s refrigerators reminded me that everything back then was slim.

It was my greatest challenge. But I relished every moment of reimagining how I could make my wardrobe fit efficiently into this unrealistic space for a modern day woman.

Fortunately, by the time my Depression-era mother needed help managing her own home filled to the hilt, I was not at my wit’s end as I took in the mess of five overrun bedrooms and closets. I was in a state of creative delight, setting timers and working feverishly against the clock to clean sweep—ultimately giving her a home that she loved for its order and cleanliness.

Here is my tried-and-true go-to plan for an efficient closet makeover.

Step 1: Sort

The best way to sort a closet is to pull everything out at once. Set 4 zones to Keep, Toss, Dry Clean, and Donate. Set a timer, give yourself a two-hour window and have your sorting crates nearby. An old piece of luggage you want to donate, or a sizable box, or a Hefty sack can be used to stuff inside the clothes you no longer wish to keep.

Pile your contents onto the bed according to categories: all tops together, suits, pants, day dresses, fancy dresses, coats—all in separate mounds.

Do not be afraid of your disaster zone. I have seen this a thousand times before, and it does nothing short of inducing an adrenaline rush most athletes have to run five miles to achieve. I get mine without the sweat, or, sadly, the calorie burn.

Eliminate from your wardrobe threadbare or unnecessary multiples. Be selective. Do you need all of the black tops you have amassed? Keep only what you love and feel great wearing.

My 1950s closet meant that instead of being able to accommodate four pair of black boots (knee-high heeled, ankle-high heeled, knee-high flat, and cowboy style) I would need to make do with one all-purpose pair. I chose to save the knee-high heeled, which looked far better under trousers than the short boots ever did.

Step 2: Set-Up

My favorite 4 closet essentials are always the same:

1) Beige suede hangers, the thin kind. This will help to create a uniform look, and maximize the hanging space you have; bulky wooden coat hangers that curve have no place in a lady’s closet. All crooks to face wall uniformly when rehanging garments.

2) A good shoe organizer is key and the benefit of trial and error keeps me coming back to the same one: a vertical hanging style with twelve shoe-boxed sized compartments. Metal shoe racks on the floor, or hanging pockets over the door all end up hogging precious real estate or become buried beneath a sea of clothes, thus making your shoes inaccessible.

3) Storage boxes with lids. I always pick a couple of oversized hat boxes to contain clutter, or keepsake cards. Lids are key—you don’t want to see the mess. It disturbs the Zen of your new closet.

4) A double-hang rod is essential for keeping shirts and blazers above skirts and folded trousers below. If you are really Type A, you will correlate your wardrobe so like colors hang above like colors.

Step 3: Stage

Create a visual aesthetic. Hide clutter, loose bobbles, or love letters inside storage boxes. Wardrobe moves light to dark, ordered by sleeve length within palette. Top rung—hang blouses, jackets; bottom—skirts, pants, in corresponding hues.

Space beside double-rod is for dresses together according to color (light to dark), style, sleeve length; special occasion dresses come next; then swing coats; then winter coats, if you don’t have a hall closet.

If you have bonus space, move a dresser inside the closet, opening up the bedroom floor. A nice add-on: family and friends in frames of similar colors, varied styles.

With all of your clothes hanging according to style, and color, you have a better idea of what to shop for next, and what to avoid doubling up on.

Your timer should be dinging just about now.

“Managing the Paper Trail” will be the next blog posting here.


Stefania ShafferBy Stefania Shaffer

Stefania Shaffer, a teacher, speaker, and writer, is grateful her WWII parents raised her to do the right thing. Her second book, the Memoir 9 Realities of Caring for an Elderly Parent: A Love Story of a Different Kind has been called “imperative reading”. Funny and compassionate, this is the insider’s view of what to expect from your daunting role if you are the adult child coming home to care for your elderly parent until the very end.

The Companion Playbook is the accompanying workbook that provides the busy caregiver with the urgent To-do list to get started today.

www.StefaniaShaffer.com

Not the future I imagined

Not the future I imagined

My parents are too young to be facing old age.

They’ve reached that point of enjoying an empty nest. My brother and I are standing on our own feet, settled into lives of our own. Rather than have to parent (active verb) they can just be parents.

My mom and I go shopping and chat several times a day. She comes out with my girlfriends and I. My dad and I go for hikes together. He’s been helping me with the fixing up part of owning my fixer-upper.

I guess it did feel a little too much like being in a TV family. Or some Instagram lifestyle account. But I just thought we were all living our lives, doing our best, and enjoying a bit of smooth sailing after lots of hard work.

Then my mom was diagnosed with MS. Only a few months later my dad was told he has Parkinson’s.

Suddenly the retirement they were expecting evaporated. They’ll probably still be well enough to finish up their last few working years…and then who knows what will happen to them.

They can’t stay in their own former fixer-upper, the one they spent their whole adult lives tailoring to their tastes. The one that echoes with our memories. They’ll have to find a new place that’s handicap accessible — how much will that cost? Sure, they’ll probably make a nice return when they sell their beloved house. But the real estate boom that will get them a good sale price will also push up the purchase price of a new home.

None of the houses — even new construction — are accessible. Their only choice would be to build custom, make huge changes, or move into a retirement home. All of those are big bucks.

The life I was imagining has vanished, too. I was looking forward to having my parents around to help me when I finally have kids of my own. Now I’ll be raising my own kids just as my parents need more and more of my help. Can I do both? Should I have a baby sooner so they can enjoy having a grandchild before they get too sick? Should I not have kids at all?

I’m scared about how this will change my relationship with my brother. We’ve always been close, but he’s not really someone I’d rely on. Certainly not for practical matters like this. I’m so excited he’s finally living on his own and not mooching off of our parents. I’m worried about how he’ll handle all of this. Will it all fall on me? Will it pit us against each other? I don’t want his relaxed, doofy personality to be something I end up resenting.

My parents have always been so proud and self-sufficient. They don’t feel stubborn to me, maybe just because I’m so similar to them. I know they don’t want to be taken care of. But someone will have to do it. What happens when they need help with personal care, like bathing or using the toilet? I can’t imagine either of them allowing it.

None of my friends can imagine my concerns. They’re worried about getting promoted at work and finding a serious boyfriend. Most of them have grandparents who are still with us and they’re worried about them, not their parents.

I know I’m not the only one facing these sorts of problems, but sometimes it feels like it.

Judith S. Lane

How caregivers cope with stress

How caregivers cope with stress

Coping with stress is a constant challenge for caregivers. Coping mechanisms that are actually realistic for caregivers is a pretty frequent topic of conversation. Here are some of the suggestions that came up recently.

Small treats

After the day I had, tonight it was a glass of wine and later ice cream with a banana and chocolate syrup. I know, not good! But it helped — LOL – Deb

I make a cup of tea when I get home, then snuggle up with my cat & listen to her purr. If that doesn’t work, vodka! – Jen

I am not in a position to take time off. What this means is my brain will not let me rest by staying in a hotel room, or anything like this. It has to be short lived, such as being able to drive on my own to get stuff done, where I decide to stop and watch movie or pick up a treat. After 7 years of living like this, the means to cope with stress have been worked in. No, it doesn’t always work. I have found for myself, I need to give myself permission to fall apart and if it is an off day, so be it. I know, easier said than done. The bathroom with the handicap style shower, with a place to sit and rails, I have set up to have a spa feeling. I have similar relaxing plans for the garden. The porch on the other side is being groomed to be a place to sit and relax, since dad likes to read outside. – Brieya

Spend a few quiet moments in bed before getting up in the morning, using that time to scroll through Facebook and Pinterest. Do a daily morning workout and yoga in my bedroom in the AM while mom is doing YouTube chair yoga in the other room. Listen to some positive Pandora music when showering and getting dressed. Take mom to the park or the beach to soak up some Vitamin D. Read when I have free time. Enjoy an evening walk with my husband and return to a nice glass of red wine. – Paola

I cope with God, wine, and music!!! – Mayra

A nice long drive in my car 🚗 – Naomi

Tomorrow is another day and I will be there to help, no matter what the day brings. Some days I have a glass of wine or a beer before going to bed. – Mary

Play video games on my phone. Seriously. I am so the bomb at Cooking Dash. I’m amazing! – Kim

Yoga. Prayer. Chocolate. – Carol

Lots of prayer, reading posts on FB with encouragement and positive words, get enough sleep, walking several miles every day, take DHA fish oil and Sam-E, listen to music and sing along with the radio. – Sheron

Get lost in a good book, bike on my recumbent bike and sing loudly to favorite songs…and, of course, pray! – Susan

Bubble bath+ buttermint tea! And shopping!🤣 – Jona

I listen to music, talk to one caring friend, go feed my horses–they’re old so it’s all I can do. – Carol

Hobbies

I would LOVE to be able to garden again, but I have become physically disabled due to spinal injury, I can’t do that, so I try and get a little bit accomplished around the house, in addition to caring for hubby, before I mindlessly play solitaire on my phone. – Kathryn

I work outside about an hour a day in my flowerbeds and garden. And I tend to do it when my husband is napping. Therefore I have peace and quiet. – Stephanie

Writing. I hope to one day write a book on my experience as a caregiver. – Sara

Try to go for a run(as if)…try to do sewing for myself or my children…otherwise, go into function mode and get on with what must be done. – Tracey

Gardening! And the occasional shopping trip, on or off-line, and oh yessss the choc-o-lat-tayyy!!! – Wendy

Long hikes in the woods is the best way for me right now. – Penny

Pets

Chocolate and talking to my sweet golden retriever. Unfortunately he’s old and wearing down along with my hubby. I can’t even go there… – Debra

I have not de-stressed well at all since my best friend, my dog Diego died 2 years ago at 16.5 years old. He was my zen. He instantly calmed me. We went for walks and snuggled a lot. I’m a 6 hour drive from my husband and have only been able to see him 2-3 times a year for 4 years now. I’m considering leaving my mother (my whole family agrees) as she isn’t open to any options (move up with my husband and I, assisted living) and my mental health has bottomed out. – Salem

I don’t get to relax – my hair has all but fallen completely out – when I can I go visit with my horses which I haven’t ridden in over a year- and my dog sleeps on my bed with me and knows when I’m overdone. – Rusty

Sleep

I have always used sleep as a way to relieve stress since I was a small child. You could liken this to “freeze” in the fight, flight or freeze adrenal response. It’s harder to get sleep when you’re an adult though. – Jeannine

Real time off

Well after the past 4 years of first taking care of my dad at home until he passed away almost 2 years ago and then taking care of my mom with Alzheimer’s…my therapist suggested if I didn’t take this mere 3 days for just me, I won’t be able to continue at this pace. I really feel like I pushed myself to the edge. And instead of going over the edge I decided to listen to my doctors this time. For the very first time I have reserved a hotel on the beach for 3 days. Where I have instructed my family that during this time….I am not a wife, mother, daughter, caregiver, sister, friend, or anything else. I am disconnecting from my life for 3 glorious days by myself sitting on a beach while watching the waves! – Marianne

I make sure I go away completely by myself for a couple of weekends a year. I find some kind of conference I am interested in a place I would love to see and just go. I do not feel one bit guilty, because I come back refreshed and stronger to deal with life! – Susan


You can read all the responses on our Facebook page.

Confessions of a backseat caregiver

Confessions of a backseat caregiver

Like so many children, I’m simultaneously exactly like and nothing like my father.

One of the things that’s very different about us is that he’s very much a caricature of the absent minded professor while I have a life that’s planned weeks in advance in a color-coded calendar.

He’s also oddly impervious to worry, while I’m wearing circles into the rug with anxious pacing.

His girlfriend is a very good match for him, but maybe too good. They are both incredibly kind people whose feathers are impossible to ruffle and they probably can’t find their car keys. Or their car.

This really came out while they were taking care of my grandmother. They are three very smart people, but sometimes it wasn’t easy to tell which one of them had dementia.

My grandmother stubbornly insisted on managing her own medication, bills, and just about everything pretty much until the end. For once, I felt like that was probably a wise choice.

As my grandmother became more frail, I grew convinced that it was actually better that I was a plane ride away from them. The more dementia took her ability to care for herself, the more I worried. We hear plenty of stories about family members whose well-intentioned help was more trouble than it’s worth, and I’m pretty sure I was one of those annoying, meddling family members. My dad was just too nice to tell me to shut up and stop nagging.

caregiver worries

It was all I could do to keep myself from texting them twenty times a day to make sure they had set up that follow up appointment, read this article, don’t forget to pay the taxes, update this paperwork, and close the windows upstairs because it was going to rain tonight.

Yes, I know my father is a successful adult. Who raised me just fine, even if he did sometimes put my sister’s kids to bed with their shoes on and did once feed us tuna straight from the can when mom wasn’t home. I did sort of suspect if my mom hadn’t been in the picture we’d have ended up being very polite, but might have our pants on backwards.

Which would lead to me texting my dad to make sure grandma’s pants weren’t on backwards.

But let’s be honest here: grandma didn’t know if her pants were on backwards. Can you even tell with elastic waistband pants? She’d be in the background insisting the steak they’d dutifully made for her was actually a salad. I was getting myself worked up over things that didn’t matter while they were doing their best to keep her weight up.

I wasn’t just bossing them around, I also wanted to help. The problem was, I couldn’t walk over to grandma’s desk to find the paperwork to make sure the bills had been paid, taxes filed, and deal with that denied claim from the insurance company. They would have to scan the paperwork so I could see it. Which was going to be more annoying then just doing it themselves. Plus, they weren’t worried about any of these things. I was the only one who thought these things were urgent matters.

When I was there in person, I could actually do some things that were actually helpful. Sometimes. Only most of the really helpful things I could do in their suburban town required me borrowing their car to run errands, which they would have to explain to me. I kept an eye on grandma. I straightened up the house. I did a bunch of chores they were completely oblivious to.

It still felt like when I used to “help” my dad as a little girl and would follow him around asking 1,000 questions an hour. In fact, it felt exactly like that. I wasn’t actually helping them at all.

While my grandmother would keep a wary eye on me, she trusted my father completely. The only way to calm her down was to reassure her that he would be back soon and take care of it.

She did not trust me. And for good reason. They were pros at maneuvering her around her victorian house. I was not. They understood her demands when they didn’t make any sense. They were far more patient than I am, which is how they calmly listened every time I gave them advice they did not want or need.

As much as the whole family jokes about my dad and his girlfriend being scatterbrained (and the stories we have to tell…) they are still the people I call when I need advice. My dad is the most reliable person I know, I just know he’ll be a little behind schedule.

Grandma died before I managed to get my backseat caregiving in check, but I suspect this is going to be a lifetime struggle for me.

Going home

Going home

I’ve always felt like an outsider.

Growing up in the suburbs I always stuck out. I didn’t fit in. I didn’t belong there. My parents always described me as the black sheep. When I was little, they tried to get me to play nice, wear dresses, do the things little girls are supposed to do. To their credit, they gave up pretty early on. They’ve always been as accepting as they’re capable of being. In high school when my friends were fighting with their parents, I was always close with mine.

There was no surprise when I announced I was moving to Brooklyn. I didn’t spend a lot of time talking about leaving the suburban conformity for the city, but I think we all assumed it was going to happen. It felt inevitable.

They insisted in helping me move up. They took me shopping for all the stuff I’d need for my first (room in an) apartment. When they come up to visit they don’t bat an eye at how weird my friends are. I’d finally found my place and they didn’t understand it, but they saw how happy I was.

When my dad was diagnosed with cancer, I didn’t really know what that meant. People talk about “cancer” as if it’s one thing. It’s really not. There are hundreds of types of cancers and it seems like some of them have nothing in common.

His type of Lymphoma isn’t necessarily terminal, but it’s serious.

I want to be there for him while he’s going through treatment, but that means going home to the suburban life I hated. Leaving my weird job, my weird friends, and my life behind.

I feel like I have to choose between my family or myself.

T. Pierce

Featured image: Christian Mueller / Shutterstock.com

Home modification tips and tricks

Home modification tips and tricks

We asked the community if they’d modified their home in order to better accommodate the person they cared for.

The most common additions were:

Wireless doorbell

One item I found very useful, in addition to the items others have listed here, is our Honeywell wireless doorbell purchased from Lowes. We attached the doorbell to mom’s bedrail and the speaker is across the house on our bedroom nightstand in case she needs us during the night. I can also bring the speaker outside with me when doing yard work (250 ft range). – Mike

We have the same thing and it’s a life saver. – Genie

Wheelchairs

If your person is small like my husband, you may consider getting a kid size wheelchair. It fits through those smaller doorways. – Pierrette

A note to homeowners: ADA requirements for wheelchair ramps are rules for public establishments. You do not need a 1:12 ratio in a private home. Our wheelchair vendors have said 1:9 ratio was just fine. That is what we have for our house and it has been entirely satisfactory. – Lee

Small modifications

Not big things but little things. Hand rail in the tub. Shower seat. ADA toilets. Reaching grabbers in every room. Guard rail on the bed with a yoga strap to roll over. That bed rail is the one I used when I was little. It is metal and super strong. – Alicia

Removed all rugs, built handicap ramp, installed railings in bathrooms, bought a swivel shower chair for the tub/shower, removed the door into the master bath for ease of entering, have hospital bed and bedside commode for nighttime use, electric recliner for ease of use…monitors in the great room and bedroom. – Deb

We have chain locks- up high on all doors since my son is a “wander/runner” with asd. We also have all cabinet doors with magnet locks and I can’t decorate for the holidays. – Danielle

We have installed hand rails in my Mom’s bathroom and shower to keep her safe. Bedside rails in her room. We also modified appliances when she was able to use them (she is sight impaired). We are still trying to figure out what to do with our stairs. We have a 4×4 at the top of the stairs and when Mom hits it with her walker, she knows to go around. Most of the time. Sometimes she just keeps pushing and banging against the barrier and I’m afraid she will topple over. My biggest fear is that she will fall down the stairs. – Kathy

Haven’t had the money to do much. We have a walk in shower, but she wont’ use it. Taller toilets. I had handrails installed on both sides of the stairs. I also have a video baby monitor in my moms room so if she gets up, I can see and hear her. She isn’t too mobile, so she comes down in the morning, then stays down until she goes to bed. – Julie

My family installed rails and put in a safe shower with no slip bottom. I have alzheimer locks and door alarms. recently added a driveway alarm to the door which I like better as the alarm rings at my bed if someone crosses the door and goes out the sliding glass door. – Cindy

We added rails to the front and back porches. We installed a handle bar on the rear door. All rugs were removed as well as the floor transition panels between each room. Also installed bathroom bars. Other minor changes done as well. – Sharma

Custom windows with tempered glass and special locks for my autistic teen who kept breaking the glass. – Karen

A nice ramp and deck in the back of my house (front yard is too small for a straight ramp), new doorknobs (more like handles) on her bedroom door and the bathroom door, and I removed all my pretty rugs from my hardwood floors. (Tripping hazard). Other things I can’t think of now. – Angela

While she was still in the ICU I had her mom get in touch with my wife’s uncle to have railings installed up both sides of each set of stairs. Also because she was a flight risk I hung bells on the bedroom door so that I would awaken if she tried to escape at night. – Andrea

I added a stair glide stair lift to take Daddy up and down the steps. Also railing for the shower and a shower seat. It was a slide chair….1/2 out of bath and 1/2 in, He sat and lifted his good leg over tub and I then lifted the bad one. He scooted over. Worked well. Sooooo much change in life when being a caregiver. – Mary

The VA came in and did an assessment. They put in ramps, stair lifts, hand held shower nozzles, shower seats and grab bars! We were so grateful, because my father in law really benefitted from the modifications! – Sharon

Remodeling

We set up ramps, chair lift, tub rails, adult height counters in both kitchen and bath. Remodeled complete basement with wide doorways and easy two and three way lighting including switches with remotes for easy lighting. – Linda

Adding on an accessible bathroom was cheaper than remodeling our master bath (which had already been completely gutted and remodeled already.) Its an option worth considering. An additional bathroom almost always adds value to your home. – Libbi

Handicapped height toilets. A new bathroom for him; toilet, sink, and a shower with a bench, hand held option for showering, and no doors or curtain. There is a drain in the middle of the floor. Easy for me to shower him and I don’t have to lift him in and out of the tub anymore. Ramps for front and back doors so that he can be more independent and there’s less worry of him falling. Half in ground pool so we can get him in and out more easily and safely. No throw rugs; they’re a trip hazard. Wider doorways for when he needs his wheelchair, which is every night and morning when his orthotics are not on. We also bought him an adjustable bed to help with reflux disease. – Ginnie

Installed wheelchair ramps, converted basement bathroom walk in shower by expanding the room to a roll in shower room, add’d a Acorn stair lift , mounted a chain above bed for lifting & adjusting self, hand rail and Auqa bath lift seat for main floor bath that was replaced with a hydrotherapy jetted tub, 2 shower/potty chairs. 2 push behind wheelchairs ( 1 for main floor 1 for basement) 2 electric recliner chairs 1 for basement 1 for main floor. a single electric bed for main floor living room and a queen size electric bed for basement bedroom, monitors, and handicap van. – Brenda

Outside the home too. Lots of cement walkways wide enough for wheelchairs, raised beds, keeping plants near to discourage wheelchair in dirt/mud. – Kathleen

Presently under remodeling…..it’s getting on my nerves but it has to be done. Widen doors, ramps, new walk in shower, remove carpets and replace with laminate wood. – Delisha

We gutted the main floor and widened hall, doors, opened kitchen, 5′ turn around in master bath with raised toilet and roll in shower, ramp in side entrance, chair lift to basement, eliminated any raise at deck door, other doors out, van conversion, these were the major things. – Sue

Moving

Initially yes. But then the old house became very impractical even with modifications so we had to move altogether to a much more care friendly home. Life is easier and more comfortable now. – Frances

Moved in Dec to home with a more open floor plan & thought everything was good. In Jan we took out carpet in mom’s bedroom & installed tile. Removed bathtub, toilet, & vanity in her bath & make walk in shower, handicapped toilet, new vanity & grab bars everywhere. Approximately $15k we hadn’t planned to spend. – Danette

We had to be moved to a bungalow because my son has Huntingtons disease. It has a wet room. No other modifications. As apart from bubble wrapping the whole contents of our home this dreadful disease doesn’t really ‘do modifications’ just danger with no solutions 🙁 We get by on a wing n a prayer x – Shelli


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5 Lessons From My Father That Helped Me As A Caregiver

5 Lessons From My Father That Helped Me As A Caregiver

Few things rise to the level of the deep appreciation that I feel for my father and the impact he continues to have on my life. As a caregiver for a wife with extreme disabilities, I now recognize skills and behaviors learned from a man who didn’t journey down the road I travel, but nevertheless prepared me for it by modeling five specific behaviors.

  1. See beyond the symptoms. In his role as minister, I observed him engage individuals, couples, and families in all types of drama and trauma. Seeing past reactive behavior, he paid attention to the non-verbal cues, and directly addressed wounded hearts. As a caregiver for a woman in relentless pain, my wife’s body does not always get to take priority over her hurting heart. The moan of the body often muffles the cry of the heart, and it requires extra discernment to speak comfort to core hurts. Listening to that heart, however, requires a skill set not easily learned, but effectively modeled by my father.
  2. Lead by serving. Even after long days, my father often grabbed the vacuum cleaner, mop, or dishrag and help tidy things. He did not view the home as his castle, but rather a place to serve his family. Growing up with five siblings, we each had chores, but Dad led us all through his example. Although the surgery count for my wife has soared to nearly eighty, like most caregivers, I spend more time with laundry, cooking, and general housework than dealing with the medical community. Thanks to Dad, I learned to serve and to clean—long before becoming a caregiver.
  3. Treat others equally. Finding something in common with everyone he meets, Dad affirms the dignity of each person. This lesson helped me better understand people, as well as engage with America’s vast medical bureaucracy. During three decades of caregiving, I’ve needed the help of dozens of physicians, as well as nurses, techs. custodial staff members, and hospital managers of the twelve hospitals she’s visited. Dad taught me the common language of human dignity that inspires, motivates, and elevates people from all walks of life.
  4. Stay on Message. Whether due to his generation, or decades of ministry and military service, Dad seems to possess an amazing ability to stay on message. Knowing what he wants to say and accomplish, Dad navigates the quagmire of human drama with the deftness of a tightrope walker. As a caregiver, I daily face an onslaught of medical, emotional, financial, and other issues. If I allowed myself to travel down every rabbit hole—I’d get nothing accomplished. Thanks to Dad, I’ve learned to better keep the main thing—the main thing.
  5. Aggressively Love. My father passionately loves my mother, my siblings and myself, and our families. Showing deep interest in each of us, I remain amazed how one man can love and value so many. He demonstrates that value with astonishing service and sacrifice.  My father exudes a joy in loving those who cannot currently, or may never, match his love. Yet it still flows from him. Dad’s love for others is a picture of God’s inexhaustible and unearned love for us. Daily putting myself between a vulnerable loved one and worse disaster, I’ve come to better understand that love.

 

No greater lesson for a caregiver exists than to learn to love those who may not be able to reciprocate.

The imprint (good or bad) of a father stretches into generations. That imprint contains the power to shape and direct long past the life of a father in often surprising ways.

It remains deeply satisfying for me to know that, however small at times, a reflection of my father is imparted to each wounded heart I encounter—including the most special of all to me: the heart belonging to my wife.

Fly, fly away

Fly, fly away

There are a hundred reasons why not to holiday abroad with David freezing and lurching as he does. An unwelcome stowaway, Parkinsons finds a way to show up wherever we travel. Guaranteed.

So he’s not reported INBBRIATED. Unfit to travel, a constant fear of mine I carry, I’ve slipped a yellow medi-alert bracelet around his wrist, and stuffed a card with his name and flight inside his shirt pocket.

I did lose him once. There one minute beside me at the gate, gone the next.

“He’s wearing a navy cap with a large D emblazoned on the front,” I explained wild eyed.

A security guy discovered him wandering, brought him back in the nick of time to board.

“Why do you do that to yourself? Are you nuts?” an acquaintance bugs me in an effort to put me off. It’s not a question.

“What are a few hiccups and couple of hair-raising scrapes compared to the plusses — the pleasure we get from our travels?” I counter. “No telephone to bug me, no set routine, nothing like getting away to lift my spirit and make me human again. Great break for both of us.”

Know it’s true.

I think back to the month in Mexico: David and I lazing in a hammock strung high in the bamboo forest canopy swinging eye level with wild green and red parrots; our pre dawn swims in velvet-black sea as the first rays of daylight skimmed the water’s surface. Least said the better about the inaccessible palapa accommodation we’d rented sight-unseen. Turned out it perched beside a disused Yelapa graveyard in the jungle…and that was just one holiday, one country.

My mind rambled to the Holy Man seated cross-legged beside the Ganges, the sacred ash he manifested for us to ingest. Next moment I saw David and me in Chile soaking in volcanic water piped directly into a sunken pool in our bedroom…then us treading on strewn gladioli blossoms carpeting the steps to a Guatemalan chapel… then there we were floating on a lake one early sunset to watch flocks of Scarlet Ibis flying home to roost in Trinidad and…and…

“Your husband needs your help,” the BA flight steward roused me midway across the Atlantic. “He’s stuck in the lavatory.”

Hobson’s choice in a case of EITHER/OR. Trapped. Poor David. Horribly humiliated, I found him with his pants around his ankles unable to hitch, zip and belt them up as well as being able to stand and open the door. Don’t want that happening again.

Lesson learned: David wears elastic-waisted jogging pants while crisscrossing the skies. Wears an extra layer of protective underwear too.

“What about the actual travel, dealing with airports and such?” nagging friend persists. “Surely that’s too hard?”

“David rides to and from the gates in a wheelchair cutting lines like royalty. The assistant pusher just zips through.” Annoyed I felt so defensive I didn’t bother telling her that we have TSA pre-check, Global Entry and the like. I feel like royalty too. Pre-boarding getting to sit buckled in our seats before the scrum hits the aisle.

“I say if you can sit at home for hours staring at the TV, then why not in a plane? What’s better than sitting tucked up in a reclining chair being attended to in the manner to which we wish, but were not born?” I snap at Miss kill-joy.

I don’t say its easy traveling with David disabled as he is, but neither of us are ready to be stay-at-homes. I’m grateful we can still pick up our bags and head out.

Yes, my care as caregiver, and David’s needs, remain the same…spooning food mouth-ward, counting pills, aiming and lifting limbs to arm and leg openings, moping urine spills etc., the grind of those twenty-four round the clock duties we Caregivers know only too well, will never, can never, change holiday, but using a trick or two we keep on rolling, rolling

I pull out my check-list.

1) Travel insurance: YES — don’t forget this tip to add to your list, if you are planning a trip, Caregivers. I discovered buying coverage at the same time as our tickets guaranteed acceptance–no questions asked. Confessing to pre-existing conditions, not required. But for that clause David might have waited months, a year even waiting to be cleared fit enough to fly home from France that year he was hospitalized for twenty days and so nearly died. Travel policy saved our butts. Paid a medical escort to deliver him to a New Mexico hospital bed.

2) Seat assignment 6a and 6d: good. Up front just behind Business Class. David should be able to walk that far safely on his own. And back out. Though once waiting to deplane, reaching into the overhead for his Carry-on bag, he teetered backwards taking down the line of passengers behind him like so many ninepins.

3) Wheelchair assistance: yup, all arranged. + have a wad of single, fives and tens stashed within easy access in a front pocket for handing out as tips. Often students, those wheelchair pusher guys are fun to talk to.

4) Pills counted and ready for fourteen days in their original pharmacy containers. Done. I used to decant David’s pills into smaller space saving containers. Big MISTAKE. Seeing is believing apparently. Doctors just won’t take my word for it. THEY have to verify which formula of medication, what dosage etc. for themselves.

I’m not one to fuss normally, but this upcoming trip to Puerto Vallarta has me nervous. Maybe I’m just old. Maybe the time has come for the vegetative slippers and fireside slumber. Perhaps I should have listened to the taxi man at Heathrow last summer. Been discouraged by the contracted thinking of that one friend.

“I must give advice Mummy, let Daddy stay at home,” the elderly Indian taxi driver from Delhi at London’s Heathrow shook his head watching me unclip David’s seatbelt, and manhandle him from the cab.

“You’re wrong,” I replied, “It’s kind of you to be so concerned but disabled as he is, my husband still gets pleasure from our travels.”

“Misery-guts,” I cursed.

Projection? The start of our holiday was not a good beginning.

An adverse reaction to one of his medications, travel anxiety, not sure of the trigger, but something turned my normally gentle David paranoid.

Convinced I was trying to deny him his medication, he grabbed the phial of pills determined to take a double dose. Cajoling, fury, even threatening to call 911–nothing persuaded him to relax his grip. It took two hours of what little night was left before I managed to trick him into giving them up. Sleep deprived and emotionally wacked out it was a miracle we made the pre-dawn flight.

David looked blank when I quizzed him next day. Had no inkling what I was talking about. How different our lives. His. Mine. I liken him as a kite flying aloft and free, and me as the controller who yanks the string struggling to keep him earthbound.

Memories of the suicidally, gawd-awful night at the airport hotel, and the bruise ringing my wrist from his fingers, fading, the warm lassitude of being on holiday is finally creeping over me. Sweaters and coats exchanged for shorts and shirts, and with sand between our toes, we flop recovering, massaged by the sound of the waves.

Question is, are two winter weeks at the beach worth the effort, worth the horrors it’s taken to get to Mexico, I ponder. Yes, so far, yes I say–two weeks at the ocean does justify the means. Mind you, this might be it–the very last time I travel with him alone. Sleep deprived, and emotionally floundering, I came this close to packing David back into the car and driving home before we’d even started. Perhaps I should have listened to the taxi man at Heathrow last summer. Been discouraged by the contracted thinking of that one friend.

“I must give advice Mummy, let Daddy stay at home,” the elderly Indian taxi driver from Delhi at London’s Heathrow shook his head watching me unclip David’s seatbelt, and manhandle him from the cab.

“You’re wrong,” I replied, “It’s kind of you to be so concerned but disabled as he is, my husband still gets great pleasure from our travels.”

“Misery-guts,” I cursed.

Here on the beach in Puerto Vallarta, I watch him. See David’s face upturned to the sun; David drinking in the blaze of color as the red orb dips into the sea; David floating on his back lifted by the waves; David plunging into the sea. Our skin tinged toast colored by the breeze off the sea, sitting on the sand together, David, our friend Jennifer from Colorado and me, a margarita in hand nibbling totopos and guacamole, Happy Hour is a happy hour indeed.

Each day a new day, I thank God for the gift of being alive.

The yellow umbrella

The yellow umbrella

Rain.

Not the kind rain kids like to run in and lovers like to walk in, but the unkind rain that kids run from and lovers shun. The hard-driving cold rain no one wants to be out in.

They were out in it.

A mother and her young daughter, alone, at a bus stop, arms wrapped each other, heads bowed against the wind and the water going through them like they weren’t even there.

A car drove by.

‘That’s so sad,’ the passenger said, looking out at the mother and daughter.

The driver said nothing.

Two blocks up the road, the car pulled into a Walgreen’s parking lot. The driver got out, went inside and returned carrying two umbrellas, one of them a kid-size yellow umbrella. A few minutes after that, the car was parked on a side street next to the bus stop. The driver got out, walked through the driving rain to the mother and daughter, handed them each an umbrella, turned and walked back to the car. Other than a squeal of delight from the child not a sound was heard, not a word was spoken.

The passenger’s name was Empathy. The driver’s name was Compassion.

Compassion was a caregiver.

We talk a lot about the caregiver.

We talk about oxygen masks, oxygen tanks, oxygen tubes, suction aspirators, nebulizers, blood pressure kits, catheters, glucose meters, insulin pumps, lancing devices, and blister packs.

Day after day.

We talk about cleaning, wiping, dressing, undressing, transferring, lotions, meds, cooking, shopping, and doctors.

Day after day.

We talk about anger, fear, frustration, the feeling of hopelessness, inadequacy and sleeping with one eye and both ears open.

Night after night.

The thing we don’t talk about is the thing that drives them – the difference between empathy and compassion. Look it up – you’ll find something like this; While empathy refers more generally to our ability to take the perspective of and feel the emotions of another person, compassion is when those feelings and thoughts include the desire to help.

Compassion is the caregiver.

Compassion is the kid that cried when Bambi’s mother died. Compassion is the kid that couldn’t kill a bug on the sidewalk, the kid that adopted the runt of the litter. Compassion is the person that attracts people with a need, financial, physical, even just the need for a good listener.

Compassion is the caregiver.

Compassion is not weakness. It takes perseverance to get up every morning knowing the challenges of the day will likely be more demanding than those of the day before and still move toward them. It takes loyalty to stand by the person who has become someone you no longer recognize and worse, no longer recognizes you. It takes the heart and soul of someone who hears someone else cry out in pain, feels their pain and wants, more than anything, to rid the world of pain. And it takes the impossible strength to hold the hand of someone you love while they move from this world to the next.

Compassion is the caregiver.

The one carrying the yellow umbrella through the rain.


By: William McDonald, Author of Old Friends (Endless Love)

5 Ways to be a Happier Millennial Caregiver

5 Ways to be a Happier Millennial Caregiver

When I first became my mom’s caregiver, I thought that being a happy caregiver was is a bit of an oxymoron. To those who are thrown into caregiving, it often feels like a thankless job. And whether you’re caring for a loved one alone or with a team of family, it’s emotionally, financially and sometimes physically exhausting. You’re constantly pulled between wanting your own, normal life back and the guilt you feel from wanting your own, normal life back. Unless you’re some magical superhuman being, it’s difficult to find happiness when you’re burnt out and grieving. You’re human. It’s natural.

It’s taken years for me to realize that happiness as a caregiver won’t just fall into my lap. Becoming a happy caregiver is a process. It isn’t a given. It ebbs and flows. Sometimes it’s hard work to be happy. Since time travel hasn’t been invented yet, I can’t change my caregiving mistakes. What I CAN do is share what I’ve learned in the last few years to become a happier millennial caregiver.

#1. Self Care

It’s so, so true that you can’t pour from an empty cup. I would know. I went through the stress of becoming a new mom to twins and becoming my mother’s caregiver simultaneously.  In the beginning, I tried to be super mom, super wife, super daughter. And guess what? I was miserable. I was experiencing caregiver burnout and it was very real. If you are unhappy with yourself, it doesn’t matter how many people tell you what an inspiration you are.

According to a 2015 report from the AARP and the National Alliance for Caregiving, there are an estimated 9.5 million millennial caregivers. That means that a little more than 11% of America’s millennials are caregivers — most of them caring for a parent or grandparent. And while that’s a lot of us, it also means that the large majority of millennials are lucky enough to not be in our shoes. Cut yourself some slack. This job is no joke.

Take care of yourself.

Go for a walk or hike outside. It’s amazing what some good ol’ vitamin D can do. Get a foot massage, indulgent in a pricey coffee, treat yourself to window shopping. Do something everyday that makes YOU happy. Put away your phone and just have a moment. You deserve it.

Along with taking time out for yourself, you need to physically take care of your body. Easier said than done, right? I’m no stranger to stress eating and sometimes you just need to indulge. But it’s amazing how much better I feel when I eat healthy and exercise. With every vitamin you pop, it’s also a small reminder that YOU are important and YOUR needs matter.

#2. Let Go of Guilt

As millennial caregivers, most of us are just hitting some of the major milestones of adulthood. We’re climbing our way up the career ladder, moving into our first homes, perhaps we’re getting married and having babies. When you suddenly find yourself caring for a declining parent or grandparent, it can be a jolt. It’s only natural to wish for the way things were. Don’t feel guilty for sometimes missing the way your life used to be.

On the other side, guilt also comes from not being able to be with your loved one enough. This person nurtured you and loves you and you feel guilty for not being able to mirror that same dedication and selflessness.

Even though it’s 100% the right move for my mom and our family, I still find myself hanging onto guilt from putting my mom in a memory care facility. I feel guilty when I drop her off. I feel guilt when she calls me in tears that she wants to move back to her old house. I have to remind myself that my mom was adamant when she was first diagnosed that she wanted me to live my life to the fullest and not be a caregiver. It’s important to remember that this isn’t what my mom hoped for either.

The point is, as millennial caregivers, you’re doing the best you can. We were dealt a tough hand. Life happens. Your life is happening now. Give yourself a break. Let go of the guilt.

#3. Realize that Friendships Evolve

When I first became my mom’s caregiver, I had a difficult time relating to my peers. I was in crisis mode and while my friends were worrying about weekend plans, I was worrying about getting my mom medicated and stable. At first, I secluded myself. I didn’t know how to act when I wasn’t my snarky, 20 something self. But that got lonely fast.

Friendships evolve. The friends who can’t hang, won’t. Your real friends will be there for you through the good and bad. Friendship isn’t about being happy all the time. See your friends. Lean on them. It’s okay to not feel “yourself”. Give them the credit they deserve.

#4. Get Support

Even if you feel alone in your caregiving, you aren’t. Support can come from family, friends, online or in-person support groups or even a babysitter so you can get some alone time. You may need time to vent. Don’t let it build up just because you don’t want to be known as a “Debbie Downer.” It’s sometimes hard to integrate your struggles into everyday conversations. I totally get it. I go to a therapist regularly so I can talk through it all.

Just because you are physically capable of juggling it all, doesn’t mean you should. It’s not healthy. Try to delegate tasks to other family members and ask advice. People want to help you. It’s your responsibility to tell them HOW.

#5. Accept Your Parents for Who They Are NOW

Sometimes I get so caught up mourning the loss of who my mother once was that I miss out on who my mom is now. Of course it’s natural to grieve, but you also need to accept this new person. This is especially difficult for degenerative diseases as, by nature, your loved one’s needs are constantly changing. You’re constantly needing to reevaluate who they are.

Although my mom has difficulty dressing herself, she also loves my kids fiercely. She may not know why she lives in a memory care facility, but she remembers tiny details of my childhood. Although we aren’t in an ideal situation, I’m a luckier person to have her in my life.

When caregiving begins

When caregiving begins

Caregivers come from all ages and walks of life. So many of our community members have been part-time, full-time, long-distance, and professional caregivers over the years.

But as Cathy put it so perfectly:

It isn’t a competition regarding when we started caregiving, every version of it is hard.

I asked our community members how old they were when they became a caregiver. Here’s what they had to say.


Childhood

My mother has been sick all my life. I don’t remember a time in my life I wasn’t helping her with some sort of medical assistance. – Sara

If you consider cooking and cleaning and being emotionally supportive for people who have special needs, technically, 6, but officially 24 is when it was clearly an adult caring for individuals with disabilities. – Eric

I suppose it really began when I was about 5, my younger brother had cystic fibrosis and I was with him till his last breath when he was 15. When I was much older we had my grandma with Alzheimer’s live with us. Then I helped my mom care for my dad who passed away in 2008 with complications of COPD & CHF. Now a caregiver for our adult son age 25 because of a TBI. – Aria

I started helping at 6-7 years old. My father had cancer and we helped mom as much as we could. He was 49. I would pick him up the floor, he’d be so weak from cancer. – Nicole

I became a caregiver at 6 yrs old, started with my 4 yr old brother. I’m still a caregiver but for the mentally challenged now. – Doreen

I was born into it. – Connie

At birth. – Skyler

12

I was 12 when I started. I had to take care of my mentally ill mother plus my younger sister. I’ve taken care of both my grandparents, great-aunt, both adult sisters, neighbor lady, and now my dad with dementia. I’m tired. – Trudy

13

I helped take care of my great-grandmother when I was 13. When I was 14 I took care of my mother when she had a nerves breakdown. At 19 I became a Certified Home Health Aid and worked outside of the home. At 23 I gave up that job and moved in with my grandparents to help take care of them. I’m now 34 and still taking care of my elderly grandparents, my mother who has had another breakdown and cant really function on her own, and my father who has physical limitations and failing health. Over the years I have also cared for my uncle and his handicapped wife. I feel like i’m watching my entire family, everyone I care about, slowly slip away a little more each day. My brother died 13 years ago and my best friend died by suicide 3 years ago. My life has been dedicated to taking care of my family. I don’t really have a life out side of that. – Amanda

14

From 14-36 years old I helped my Mom (and Aunt also who lived with us). Now I help my Dad and I’m 48. – Rebecca

I would work as a babysitter at 14, doing caregiving. At 17 I started helping with my nana. – Cheyenne

15

My dad got sick with heart disease and related problems when I was 15 and I helped care for him in the 21 years before his death. I moved 150 miles from my hometown to live with my mom and care for her the last few years of her life, I was 54 then. I’m 59 now and I care for my sister. – Joy

My mother was diagnosed with Breast Cancer in 1976 when I was 11 and needed more and more care by 1980 long before cancer was a household word. She died in 1989 just after I graduated from nursing school. – Loretta

The neighbor hired me to take care of the mentally impaired son when I was 15. All my jobs, except for one, had some form of taking care of someone else. I’m 58 now. My husband has asked me to fight the urge to take care of other people and so we can enjoyed our retirement years finally taking care of each other. I still take care of people occasionally. – Madeleine

16

My grandmother was ill…it was summer…what else needs to be said??? – Gwen

I was 24 for my Mom. I helped with my grandma at 16. I’m now 47. I’m now chronically ill. We help each other with cooking. I do the laundry. We have someone do the yard work. I don’t know how long it will go on but I will do the job until the end. No way I will let her go to a home. – Alicia

I was 16 and still in high school. – Tracy

17

I became a caregiver at 17. Now I’m 34. – Rachelle

18

I took care of mental challenged children. They had been abused and their parents on drugs. – Jo

I started taking care of my mother at 18. I became a nurse when I was 27. – Lois

I was 18 when I became a caregiver for my grandfather. – Margie

19

I became a caregiver at 19, as soon as i left high school. I gave up lots including college to take up being a full time caregiver to my parents. Took care of my dad until his death in 2008 and still taking care of my mom. – Julia

I was 19 when I started as a health care aid. – Mara

I started at 19 years old. I’m 22 now. – Bri

I started at 19, as a professional caregiver. – Beth

I was 19 when I gave birth to a son with Lissencephaly. He is now 21 and needs 24/7 care. – Shaz

I became a caregiver at 19, right out of high school. Now 30 years later I’m still going. – Diane

I was 19. Now I have been doing it for about 20 years. – Kama

20

My dad had a massive stroke a few days after my birthday and my mom couldn’t stop working. I was enrolled in online college courses so I was able to be with him during the day. He eventually recovered well enough to be alone and take care of himself. At 25 I took care of him while he went through chemo and radiation at MD Anderson for almost two months. We live in Mississippi so I drove my parents out and stayed with them. Sadly, he passed away from it after a two year battle. Two years ago at 30 I moved back home to be my mom’s full-time caregiver after her early onset dementia began progressing and she didn’t need to be driving anymore. It’s now reached a level where I have to help her bathe and get dressed, but she knows enough that we are still able to have a good time. – Angela

21

I was 21, mom of a 16 month old and 5 month old when my 5 month old was shaken by his babysitter. They didn’t think he would make it, he did but he is fully dependent and at the cognitive level of a 6-9 month old though he is 14. – Tiffany

My Mom had a brain tumor in her brain stem. It was near a main artery so they had to leave some there, which grew back in 2006 and she had her 2nd brain surgery. From her surgeries she had a stroke during her surgery which left her paralyzed on the left side, short term memory was affected, vision was affected, speech. Lover her dearly and I still care for her and I am 48 now. – Michelle

I was a caregiver for my grandfather for about 2 years, assisting my grandmother, when I was in my early 20s. In 2008, when I was 50, my Dad was diagnosed with Alzheimer’s, so I moved in with parents to help my Mom with his care. We kept him at home until he passed in 2009. I continued to live with my Mom, and am still with her to this day. She is now 86 years old; I am 58. I have been her sole caregiver since 2009. She has numerous health issues, including difficult-to-control diabetes, COPD, acute and chronic CHF, HTN, diabetic neuropathy, PVD. I also work full-time from home as a medical transcriptionist. Yes, I am tired, but God will get me through it and help me continue to provide the best care possible. – Diane

I became a caregiver at 21, I think. It’s been so long that I forget. – Amanda

I was 21. I’m 57 now and still caregiving. – Michelle

22

I was 22 when my husband had a TBI. – Mel

I was in my 20s. I’m still going strong in my very late 50s. – Deborah

23

I became a caregiver at 23, I’m now 58. I have gone from one person to another all those years. – Debbie

At 23 I started in a nursing home. Now I’m taking care of my husband. – Shelly

24

Married less than 3 years, began caring for my husband’s mother (breast cancer – no doctors or medical care, per her religion). Also, her sister had Alzheimer’s. Then late 30s, caring for my own mother until her death from COPD. – Lynn

At 24 I took care of my mom for a year before she passed away. – Fatin

25

My first and only son was born with a brain injury during labor and delivery, due to medical negligence. He has cerebral palsy, cortical visual impairment and many struggles and delays. But he is my whole world. – Liz

Mid 20’s is when I started taking care of my mom. Almost 60 now, and still caregiving for others. I’m tired and ready to retire. Hopefully within the next year. – Penny

I became a caregiver at 25. I’m 41 now. – Shannon

I was 25 when I started caring for my mother with early onset Alzheimer’s. – Lindsey

I was 25 when my mom got a heart attack and, later on, a stroke. – Gloria

26

It was my 26 birthday when my husband had a stroke,that left him with no speech & paralyzed on right side. I’m still caring for him. The older you get the harder it seems. – Patti

I became a caregiver at 26, and I’m still a care giver for the disabled. – Terrie

27

I was 27. I have a 19 year old with Spina Bifida. – Jackie

28

At 28 I became a caregiver after my sister suffered a traumatic brain injury in a motor car collision. – Tracey

29

When my husband suffered a severe closed head injury from an accident. Took care of him for almost 39 years. Now I have to figure out the rest of my life. – Darnly

I became a caregiver at 29, when my son was born disabled. – Terri

I was a caregiver at 29 and again at 43. – Jennifer

30

At 30 I became my parent’s caregiver. – Kim

31

I will be starting my 26th year on May 27th. – John

32

I was 32 when I moved in with my 80 year old Grandma to help with her stroke recovery. It’s coming up on 2 years since I made one of the best decisions of my life… ❤️  She took 46 steps on her own today!!! There were so many unrelated health issues for over a year after her stroke, so rehab was put off for a long time. Praise God, she’s finally in good health again and is making wonderful, albeit slow, progress with recovery. – Cyndi

33

Mom was diagnosed with cancer 6 years ago. Took care of her for two years and then my father as he had health issues toward the end of mom’s life. I am still caring for dad but now on hospice care and in my home. – Rachelle

I was widowed suddenly at 29. I became a caregiver at 33 for my boyfriend with cancer. He had lymphoma and brain tumors. – Coral

At 33 I started working in a hospice house. – Karen

34

I was 34. It was the end of everything. The beginning of everything. – Charles

35

I was 35. It has been 5 years since my husband’s accident. – Stephanie

I was 35 when my mother had a sudden ruptured brain aneurysm. – Christina

37

I was 37. Momma had Alzheimer’s. – Mary

38

I was 38 when my mom got sick, well sicker. We had a drapery shop we had owned and operated for about 25 years at the time, I tried to juggle taking care of her and keeping our shop afloat, eventually I had to close the business because she needed 24/7 care. She already had cardiomyopathy, and had it for years. Then one day she thought she was having a heart attack. Brought her to the emergency room and found out she had pneumonia, congestive heart failure, and throat cancer. Her throat cancer was in stages 3 and 4, and they gave her about 6 months to live. She was a complicated case due to the cardiomyopathy and CHF. No chemo, radiation was our only option. That was May 2003. With aggressive radiation for five weeks, twice a day, five days a week, she lived another two and a half years. My dad who has Parkinson’s couldn’t take care of her on his own, she needed 24/7 care. I took care of her, now I take care of him. We do what we must for the people we love. – Stacie

My mom was on hospice with cancer when I was 38. Daddy became ill with CHF when I was 41 and my husband was diagnosed with MS six months later. I also have a son with autism who is 23. I’m now 55. – Laurie

39

My son had his TBI when he was 12. He’s 25 now. – Tina

40

My son was diagnosed with a brain tumor/cancer and I was age 40. He was 20. He passed away this past Jan. 2, 2017. Twenty five long years of his illness. We kept him at home til the very end. – Kathy

41

I was 41 and have been caring for my husband for 17 years now. He has brain injury and cannot walk, talk and he eats through a G-tube. – Juracy

42

Age 42 for my patients. One year with my boyfriend and thank goodness we had Hospice help. He has been gone for 6 month’s. I still miss him so very much. – Susanne

I was 42 when my mom had a stroke. – Robin

44

I was 44 when my partner suffered a TBI after an 18 wheel truck ran a red light at 9 am. She was on her way to work…that was in1995. – Lorraine

45

I became a caregiver at 45. I never saw it coming. – Louis

I was 45. My daughter was 12. It takes the two of us to handle it. – Kim

46

I was 46 years old when I started taking care of my 52 year old husband. – Cindy

I was 46 when I started being a caregiver. – Roberta

47

It was 47 for me. My husband survived 20 months. (Glioblastoma average survival is only 14 months). – Melanie

I became a caregiver at 47. My husband is sick. – Lorraine

48

I was 48 when my wife was diagnosed with Huntington’s Disease. – Claude

49

My father went into hospice care & my mother has dementia. My dad is actually doing very well, but really bad memory loss. My mother often thinks I am her cousin. – Cindy

I was a caregiver from 49 to 53 for my parents. I’m still doing at 55 for my disabled husband. – Julie

51

My husband died 4 months ago. He was diagnosed with a brain tumor 4 years ago. – Susan

52

I’ve been doing it full time since then. (4years). Part time 10+ years prior. – Angela

53

I was 53 when I cared for my Dad and then not again until I was 65 when my husband got Alzheimer’s. – Lynne

54

I became a caregiver at 54…I will be 64 next week. – Annette

55

I became a caregiver when my 57yr husband suffered a Dbl stroke that left him completely left side paralyzed and 33% upper right brain lobe death. It is going on 5 years now. – Brenda

I became a caregiver at 55, and I’m still doing it at 61. I retired from my job to take on this new role. – Paula

We took care of my mom after my dad died. We were all over 55. – Julie

56

It became full-time from 56-64. – Christine

57

My husband had a bad stroke almost eight years ago, three weeks after he retired. He had just turned sixty. You just never know what life has in store for you! – Karen

My Mother is now 97 and five years ago I was 57 when I started taking care of her, 24/7. – Beverly


You can read all of the responses on our Facebook page.

When I’m 24

When I’m 24

When we said “in sickness and in health” we envisioned supporting each other through old age.

Even 64 seems pretty young these days. The world has changed since the Beatles were at the top of the charts. When did we expect to start feeling old? At 70-something? But then there’s that 96-year-old yoga instructor.

I didn’t imagine the “in sickness” would happen in our 20s.

We felt so responsible. We were checking off all the boxes for becoming adults. We unpacked all the housewares we got for our wedding into our new house and started cooking healthy meals, going out running together on the weekends, and opened up retirement accounts. We didn’t want our careers to be first, but we also wanted to climb the ladder. We talked about who would take how much leave once we had a baby, how we’d manage childcare and housework. We were planners, planning our life together.

And then one day he isn’t feeling well. Really not feeling well. So I took him to the ER, his head in my lap in the waiting room, figuring they’d send us home with some antibiotics. Instead, he was in a coma by the end of the day.

Too much was happening at once for me to even worry about anything. I was in shock.

He came out of the coma, thankfully, but not really. I guess no one comes out of a coma as if nothing had happened; they’re never the same.

He’s never going to be able to go back to the job he had, although it seems hopeful he’ll be able to go back to work eventually. It’s hard to understand that he has brain damage, since there was no accident, nothing happened. He seems like his old self, except when he doesn’t. It seems like he can manage something on his own, except then he can’t.

I don’t want to baby him and keep him from progressing and recovering. But it feels cruel to watch him struggle, flounder on his own.

It feels cruel that this has happened to us.

At night I ask myself how long I will have to do this. How long I can do this. The doctors say he’ll probably be fine on his own, be able to get some sort of job, but there’s no guarantee. Right now he is well enough to stay home alone while I’m back to work part time, except I never quite know what I’ll come home to. So far it’s just been…confusing…to see what trouble he’s gotten into. But I worry all day that he’ll hurt himself or burn the house down.

What if he’s like this forever? How will I take care of us both?

I try so hard to not be angry, to not lose patience with him. Because I’m never mad at him. He didn’t do this. I’m just angry. Angry that this is our life now, that this happened to us. But I know being angry won’t make things any easier.

Irene Martin

Exhaustion

Exhaustion

Exhaustion.  It can hit out of the blue.  You think you’re doing well and handling everything, and you have a hopeful outlook.  It’s not always physical exhaustion.  It can be mental or emotional exhaustion.  But, mental or emotional exhaustion definitely adds to the physical exhaustion.  That’s where I am this week.  I’m mentally exhausted.  I’m tired of struggling all the time.  I struggle with a busy schedule…work, managing a household, taking care of kids, being available to my husband for his dialysis or any other medical needs he has.  I struggle with worry EVERY SINGLE MONTH on how I’m going to pay everything and still be able to buy a little extra, or do something fun, or be able to pay for something my kids need or want.

Home dialysis was supposed to make things easier for “us.”  They told us the machine is the size of a suitcase, and we can take it anywhere, even on vacation.  They didn’t tell us we would need to lug 5 large bags of fluid for each day of dialysis (25 bags for a week), saline IV bags, and a gazillion medical supplies with us. They told us you do dialysis more frequently, but for less time.  We do dialysis 5 nights a week for 2 1/2 to 3 hours once he is actually hooked up and dialyzing.  It doesn’t include set-up time and clean-up time.  It ends up more like 5 hours a night.  That’s a lot.  They said he can do it on his own, but it turns out, he has to have someone here with him to help him hook up and unhook, or be here in case of an emergency.  It’s not easier at all.  It’s harder.

I’m so tired of worrying about money.  I get the summers off, but I end up a stressed out wreck because I don’t get paid when I don’t work.  I’ve been applying for other full time jobs that are year round, even though it will mean I will have to leave a job of 9 years that I love.  I considered finding something part time that I could do during the school year to supplement my income, and pick up hours in the summer to maybe enjoy them without worrying.  But, because of dialysis 5 nights a week, I don’t know how it’s possible to work part time during the school year, after work.  There just isn’t enough time in the week.

I’m tired of saying no to things that are important to my kids because I can’t afford them or I don’t have the time or ability to be both at home, and out.  People will say, “you don’t have to give them everything they ask for.”  My answer to that is that they don’t ask for much, and when they do ask, it’s very important to them, or it’s a life event that they shouldn’t have to miss.  I hate that there are times they have to miss out because I’m not available or can’t afford something.  I hate struggling to figure out where the extra money is going to come from.  I hate that I am the only one who worries about it.  It really sucks to keep disappointing your child, when you know you are struggling yourself to accept all of this.

I’m tired of having to keep it all to myself because the person that I’ve always figured this stuff out with is sick.  He’s sleepy, he’s medicated, his brain is often foggy.  And there isn’t much he can do.  He is exhausted, too.  His body is failing him, he’s in constant pain, he’s sleep deprived, he’s forgetful.  He doesn’t have a solution to any of this.  I’m tired of handling it all alone.  I have to always keep him and his illness in mind, otherwise I would be overcome by resentment and hopelessness.  I keep him in mind because he has enough to worry about.   He didn’t ask for this any more than I did.  He has it worse.  My exhaustion is nothing compared to his.

This exhaustion has come and gone many times in the last 9 years since he got sick.  We always rally, we always make it through, we always survive.  It’s a matter of plugging along and pushing through.  We have no other choice.


Read more on Renee’s blog.