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.

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

How to Help Parents Stay at Home Longer

How to Help Parents Stay at Home Longer

As aging parents creep past retirement age and into their 70s and 80s, adult children are faced with the same conundrum: how can they enable their mothers and fathers to stay in their homes longer, rather than send their loved one to a retirement home or similar facility?

According to the AARP, 30 million households provide care for an adult over the age of 50, and that number is expected to double by 2040. Failing to plan ahead now could cost tens or even hundreds of thousands of dollars, not to mention precious time, comfort, and dignity. Take the following tips to heart so you can create a caregiving strategy for your loved ones that will keep them living how they want for as long as possible.

Starting Out

No one wants to have the care discussion with their parents, many of whom want to maintain their independence. Nonetheless, in order to avoid costly, embarrassing, and potentially fatal consequences, this necessary conversation must begin with honesty and compassion.

Work Together

Effective caregiving plans include family members, close family friends, and other loved ones; they also designate a single “team leader” or point person who facilitates discussions and keeps communication forthcoming. Remember not to make any decision unilaterally. Apart from creating negative emotions, legal consequences may follow if the parent disputes the child’s action.

You may want to consider hiring someone to help with this planning. A geriatric care manager can assist your family with this.

Make a List, Check It Twice

Create checklists for personal information, home maintenance, health, finances, and transportation. These checklists should include all essential information, any necessary phone numbers, the location of documents or other important paperwork, and a division of labor. Allow multiple people — including your parents themselves — to divvy responsibilities where appropriate to ensure that no one person feels the full burden of caregiving.

On the topic of lists, good protocol calls for creating what’s known as a Vial of L.I.F.E. (Lifesaving Information for Emergencies) checklist. Be sure it includes hospital preferences, allergies, medical conditions, insurance information, and emergency contacts. This list can prove essential information in critical situations if the parent cannot respond or otherwise provide the necessary details.

Invaluable Resources

There are organizations available to handle questions about elder care, such as the AARP, or your local government. The Eldercare Locator can provide a variety of services in your neighborhood, and the official Medicare website will inform on free or reduced-cost healthcare offerings.

Should you choose to hire an in-home care provider, there are additional things you want to consider to make sure your loved one is best cared for.

The Power Is Yours

One of the most important and immediate tasks to complete when planning your loved one’s transition plan is designating a power of attorney and arranging for decision-making processes to occur in the event of incapacity.

The documents that must be created are the Durable Power of Attorney for Health Care — which you probably know as a “living will” — as well as a Physician’s Order for Life-Sustaining Treatment (POLST), the Durable Power of Attorney for Asset Management (or Finance), and the will itself.

  • The powers of attorney provide for a trusted person like a child to make legal and health care decisions for a loved one who is physically unable.
  • The POLST replaces a Do Not Resuscitate directive and allows individuals to decide whether or not emergency responders and other medical professionals should provide certain treatments.
  • A will establishes how one’s assets and estate will be distributed. It’s quite possible your loved one already has a will in place.

Many families will also want to create a living trust, which places the control of an estate’s assets with a legal entity. Both of these allow for assets to bypass legal probate, which can be a lengthy and stressful process.

Make Use of Technology

Technology has made it easier for families to anticipate and ameliorate concerns for elderly family members. Try utilizing these techniques to provide convenient care for your loved one.

1. Home Delivery

Amazon Prime or similar home delivery services are fantastic ways to ensure that household goods never run out. Paper products, incontinence products, hygiene items and toiletries, cleaning supplies, and even some dry goods can be delivered right to the doorstep in just a day or two. A “wish list” can be created to provide a handy source for the necessary items, and family members can order off the list and pay directly, circumventing any complicating factors.

2. A Pre-Paid and Pre-Programmed Phone

Gone are the days of leafing through books filled with chicken scratch handwriting, trying to find the right phone number. Buy an inexpensive phone and pre-program essential phone numbers with simple, easy-to-understand labels. For example, emergency services, doctors, family members, and neighbors can be programmed, saving valuable time in a critical situation. Keep it simple so you can teach your loved one how to operate the device.

3. Keep Pills on Lockdown

Many senior citizens take multiple pills a day, and forgetting dosages or mixing medicines can be a fatal hazard to the elderly. Even though most pill containers are labeled, aging parents become easily confused; these containers are also unsafe for visiting children. Buying an automatic, lockable pill dispenser means medicines are tamper-proof and only accessible when needed. Many of these also alert the parent (or caregiver) when pills are running low to make re-ordering easier.

4. Keep Information Managed and Centralized

Google Drive has an assortment of invaluable, accessible, and free tools to organize, manage, and share important materials within a family. Living wills, power of attorney documents, medication lists, pharmacy prescriptions, home security system passwords, and other important lists and information can be accessed by multiple family members. Google has downloadable apps that allow this data to be retrieved on mobile phones, convenient for trips to the pharmacy, doctor, or attorney.

Other Tips

A caregiver is essential for handling much of the mail delivered to the home of an elderly family member. The generation going through these life changes often relies on physical mail, instead of email, but may find it increasingly difficult to organize all they receive. Designate someone to sort important bills and other financially important items from the catalogs, magazines, and junk mail received on a daily basis. Another option is to have the important mail, such as information from banks and brokerage accounts, forwarded to the physical address of a trusted family member or power of attorney.

One out of three people over the age of 65 will experience a fall, which is the leading cause of serious injury among seniors. Purchase a monitoring system that has a medical alert button can be invaluable. It will alert emergency responders in the event of a major fall or other injury. Some come with buttons that can be worn on the body for easy accessibility, and others offer two-way communication to keep the fallen person on the line while medical assistance arrives. Consider also purchasing grab bars and benches in potentially hazardous areas, like bathrooms, foyers, and steps.

And finally, seniors with dementia are prone to wandering off. If this is a concern you have for your loved one, consider purchasing an inexpensive door chime to ring when the front door is opened. This will alert others in the house before he or she can get very far.

What steps can you take this week to create a caregiving plan for your parents? Let us know in the comments section.


Kathleen Webb co-founded HomeWork Solutions in 1993 to provide payroll and tax services to families employing household workers. Kathy has extensive experience preparing ‘nanny tax’ payroll taxes. She is the author of numerous articles on this topic and has been featured in the Wall Street Journal, Kiplinger’s Personal Finance, and the Congressional Quarterly. She also consulted with Senate staffers in the drafting of the 1994 Nanny Tax Law.

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.

Combating Compassion Fatigue with Technology

Combating Compassion Fatigue with Technology

Caregiving is a rewarding activity, but it can also be very emotionally and physically draining. Compassion fatigue among caregivers is common, which can lead to burnout, depression, and exhaustion. Not only are these symptoms draining on the caregiver, but over time, they can lead to a decrease in quality of care.  

Luckily, today we have boundless technology to assist in both trivial and specialized tasks. Below are some ways that technology can help ease the burden on caregivers and improve quality of care for seniors. 

Technology and Senior Care

Technology is mostly associated with and marketed toward young people, mostly because they are the ones who will spend the most money on new technologies throughout their lives. But technological advances can improve livelihoods of people of all ages, especially people with dementia or limited mobility. Caregivers can utilize technologies built specifically for elder care, like remote monitoring systems and wearables that monitor blood pressure and allow seniors to call for help in case of a fall. These devices not only offer concrete benefits, but they also provide a sense of security, so the caregiver knows that there are proper safety measures in place and that they’ll be alerted immediately in the case of an emergency.

Inside the home

Accidents inside the home are not uncommon for seniors. For many, home is where they spend most of their time. When we are in our homes, we tend to be relaxed, and not as careful as we might need to be. This can lead to carelessness and injury. This is why caregivers should look into home improvements like home automation that makes sure devices are off and the house is locked when no one is there. Safety devices like hearing impaired smoke alarms and other home monitoring systems are also recommended. These technologies can help prevent major incidents, while falls can be prevented with the installation of handrails and other supportive structures throughout the home. 

Preventing Abuse/Neglect

Many caregivers find that they cannot take care of their charge alone while still caring for themselves. This may lead to looking for assisted living situations or hiring medical assistance. Unfortunately, because social services are perpetually underfunded, the people in these positions are often at the same risk of burnout as family caregivers. This leads to many seniors being emotionally harmed by neglect or abuse. 

But luckily, the Internet provides caregivers the opportunity to do extensive research on service providers. It also provides methods to report abuse and neglect, preventing others from experiencing the same. Phones and computers make it easy to record infractions and hold people accountable. There are also vast online communities giving caregivers ideas and resources for providing quality care, both with and without assistance.

It’s common for caregiving to wear people out. Technology can help you implement safety measures and automate certain tasks. How have you used technology in caregiving? Share your experience in the comments!


Jeriann Watkins Ireland

Jeriann blogs about her financial journey, food adventures, and life in general at dairyairhead.com. Check out her blog or twitter to see more of her writing!

Sharing caregiving tasks with your siblings

Sharing caregiving tasks with your siblings

When an elderly parent becomes unwell or unable to maintain full independence, the child is often the one to step in to provide his/her parent with the loving care they need. Caregiving for a parent is always difficult, but when there are several siblings involved, everything becomes that much more complicated.

There are many different ways that adult children react to their parent becoming dependant on the help of others, and when there is more than one child, these individualized reactions can cause strife and bitter feelings, unless dealt with correctly.

The following are some common ways that this situation can (and does) play out:

1.  Siblings Who Refuse to Help

When the child of an aging parent has other siblings around, he/she may be tempted to take the easy way out and allow the burden to fall on someone else’s shoulders. This can obviously cause a lot of resentment among the siblings who end up with all or most of the responsibilities.

One such example is Gloria P.*, who shoulders the entire burden of caring for her aging father.

As Gloria shared, “The responsibilities of caring for my dad, who has dementia, are daunting – and my brothers never visit or help in any way. I took in his dog, I pay his bills, I drive him places – but they do nothing, and honestly, I resent that.”

Carol Bradley Bursack1 recommends several ways to deal with siblings who refuse to take on their fair share of responsibilities:

  • Ask for help. Be direct and tell them exactly what you need or what they might do to ease your burden.
  • Have a care plan. A care plan can help you organize tasks and responsibilities to make it easier for them to get involved. Also consider keeping an online medical & health record so that you’re always on the same page.
  • Let go of expectations. By learning to let go of your expectations and hurt and allowing yourself the liberty to find help elsewhere without feelings of resentment, you are ensuring your own peace of mind.

2.  Siblings Who Forcefully Take Control

Alternatively, there may be several children who would like to help – but another sibling refuses their help, choosing to control the situation and have the last word in their parents’ care.

“The opposite problem also exists, when one sibling takes on the entire burden, believing he/she must do everything and shutting out the other siblings. In my family, our oldest sister took Mom on as her personal project. We’re not allowed to have an opinion. Yes, she’s good with financial stuff and Medicare – but that doesn’t mean we don’t want to be involved in our mother’s care! She just won’t let us do anything for our mother, despite our protests,” says Diane S.

3.  Multiple Siblings with Conflicting Interests

Even when all or most of the children pitch in and/or get involved in their parents’ care, there can be a lot of conflict caused by different opinions, or, according to Alexis Abramson, gerontologist and author of “The Caregiver’s Survival Handbook,” even by pre-existing tension between siblings:

“When siblings squabble over who will care for Mom or Dad or refuse to help one another with caregiving tasks, the problem often isn’t about caregiving itself, but conflicts and power struggles that may have existed since childhood.” – Alexis Abramson

Many caregivers and senior care managers recommend circumventing such issues by having a neutral third party involved as a mediator.

If the main issue is the differences of opinions, one great recommendation is given by Heidi T., an experienced family caregiver:

“Your first consideration should always be to fill the wishes of the parent wherever possible. If not, try to make the kinds of decisions the parent would have made in the past. This way, instead of getting your personal feelings involved and doing what’s best for yourself, you know you are doing the best you can for your parent.”

Ellie’s Story

Ellie L. from New Jersey is one of seven siblings and she often struggles with keeping the peace between her siblings. The following is her take on sharing the caregiving burden, as well as the mindset that helps her ensure that her mother gets the best care possible without any hard feelings among her siblings.

“One of the hardest things about having an elderly mother,” Ellie begins, “is juggling the many opinions and keeping peace. It’s really true what they say – one mother can take care of seven children, but seven children can’t take care of one mother.

“The first thing I try to remember,” she continues, “is that if other family members give opinions or try to be ‘helpful’ they are doing it from love.

“Everyone makes mistakes; no one does a perfect job taking care of others. If you don’t like the way your sibling is handling it – realize that she’s doing the best she can.

“In my own family situation, I have no reason to suspect abuse. Of course, if one does suspect some kind of abuse, one has to take action!! If not, you have to trust the caregiver to make the best decisions he/she can. (It doesn’t help to mix in for everything… too many cooks spoil the broth!)

“Sometimes, my siblings make decisions that don’t make sense or that were wrong – but once it happened, it’s over and there’s nothing I can do about it. Instead of causing family discord because of the past, I choose to accept it and move on.

“If I feel strongly that something needs to be done a certain way, while my sister feels the opposite, I need to remember that two people can have opposite opinions and neither one is wrong. For example, I feel that our Mom needs evaluation for depression, and my sister thinks I’m just imagining things. In this case (and in many other cases like this one), there is no danger to giving in and waiting some time before re-evaluating her condition. It gets tricky if you think that there is danger, but I find that it’s pretty rare that it gets to that. After all, unless you’re dealing with unreasonable people, your siblings all want what’s best for their mom.

“Years ago, when my sister’s mother-in-law was unwell, she had one sister who was mostly involved in the caregiving. She once complained, ‘They live out of town and they like to have opinions. I’m here, taking care of everything, and my siblings in another town have an opinion on how I do it! You know, if you really want to have opinions, move here and do it yourself.’

“When I heard that,” Ellie concludes, “I made up my mind that if my sisters are going to do things I’m not able to take on myself, I have no right to have an opinion.”

Jessica C., who helps care for both of her parents, agrees with this: “My parents live with my sister. We have three other siblings who live around the country. When I spent a few months at my sister’s home (which is in another state), I gained a new appreciation for what she does for my parents, as well as how difficult caring for them can be. My other siblings, who didn’t share this appreciation, tended to bark out orders. Because of my experience, I have learned to allow my sister to make the decisions, and I encourage my other siblings to do the same. The most important thing is the care and wellbeing of our parents.”

Top 5 Tips for Shared Caregiving

When sharing the caregiving burden with your siblings, Ellie recommends keeping the following pointers in mind:

  • People make mistakes – and sometimes what you believe is a mistake may actually not be a mistake at all.
  • Two opposite opinions can both be right.
  • Appreciate what they’re doing instead of thinking about how you could do it better.
  • You all share love for your parent and the fact that you have different opinions is okay.
  • Always support each other and respect each other’s opinions. This is especially important because, similar to parents who undermine each other and thus undermine their child’s growth, siblings who don’t support each other in their parent’s end-of-life journey end up undermining their care – and this is true even when you’re in the right.

 

*Some names have been changed to protect the privacy of the individuals involved.

1 See Top 3 Excuses from Siblings Who Don’t Help with Caregiving

Featured image: Joseph Sohm / Shutterstock.com


About the author: Hanna Landman lives in New Jersey with her husband and child. She writes for AvaCare Medical, an online medical supply store servicing seniors and the homebound across the US. You can see some of her published work about senior care and more here.

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

Using Body Language to Communicate Clearly to Those with Alzheimer’s

Using Body Language to Communicate Clearly to Those with Alzheimer’s

As Alzheimer’s progresses, verbal communication becomes more and more difficult. Alzheimer’s has a devastating effect on the brain’s ability to recognize and process verbal language. Language impairment is considered one of the “primary components” of cognitive decline in those coping with Alzheimer’s.

For those of us who provide Alzheimer’s care, whether as family members or professional caregivers, this makes communication difficult, particularly in the mid-to-late stages of Alzheimer’s. But “difficult” is not “impossible.” In fact, there are non-verbal ways we can use to communicate clearly with Alzheimer’s sufferers, commonly known as “body language.”

But there’s a catch here: few of us are truly fluent in body language. When we’re growing up, we spend years learning how to read, speak, and write — but this is all verbal language. Most of us didn’t get class credit for learning open posture or how to maintain proper eye contact.

So consider this post a crash course in why body language is more powerful than you might think, how caregivers can become more fluent in non-verbal language, and what you can (and can’t) say by communicating this way.

Body Language Essential to Alzheimer’s Care

Human beings learn how to read body language well before we ever speak our first word. And for people who are coping with Alzheimer’s, their ability to understand body language lasts much longer than their ability to understand speech and written language.

When verbal language fails those suffering from dementia, they turn to other ways of making sense of their surroundings. Consciously or unconsciously, they start to rely on other signals to interpret the world and the people they interact with. If a conversation can’t be followed, other signals (like crossed arms, anxious tapping, or laughter) become more important than what’s being said. If someone’s shouting, it’s not what they’re shouting, but that they’re shouting that matters.

As those with Alzheimer’s come to rely on non-verbal communication more and more, even small gestures — a slight change in posture, a quiet sigh — can become meaningful and magnified. For caregivers, it’s important that we understand what our body language is saying to those in our care and how we can harness the power of body language to comfort and communicate with care recipients.

Body Language 101 for Alzheimer’s Caregivers

Becoming fluent in body language doesn’t happen overnight. Executives and politicians spend years perfecting the ways they communicate non-verbally. But by making a conscious effort to build and hone our non-verbal communication skills, it’s possible for caregivers to communicate more clearly and effectively with those in our care.

Here are some of the key ways that you can improve your body language fluency as an Alzheimer’s care provider:

  • Eye Contact. Maintain eye contact to convey that you’re paying attention to a person coping with Alzheimer’s. Don’t avoid eye contact during conversation. Doing so conveys dismissiveness. Eye contact should be made at their eye level or below — not above, which gives the impression of dominance.
  • Facial Expressions. Always be conscious of what your facial expressions are saying. In day-to-day conversation, it’s easy to say one thing and have a raised eyebrow or a twist of the mouth say another. When these expressions are the only thing the recipient can understand, the words your using aren’t what matter.
  • Open Posture. Keeping an open posture is a key part of body language. An open posture — facing the person, chest forward, no crossed arms or legs — tells a person that you’re focused on them, open to their concerns, and engaged with them emotionally.
  • Avoid Tics and Distractions. Small tics and distractions can show that you’re agitated, angry, or bored when spending time with a person. Tapping your armrest, bouncing your knee, checking your phone, or multi-tasking can communicate that you’re not invested in the person.
  • Use Gestures. Using your hands and objects around you to communicate simple messages can do wonders when caring for someone with Alzheimer’s. However, it’s important not to overuse gestures, which can agitate or confuse those with Alzheimer’s.

Using Body Language to Communicate

Body language is a highly effective tool for communication, but it’s a limited one. So it’s important to know what you can and can’t communicate by using body language.

For instance, complex thoughts and directions require verbal language. There is nothing your facial expression or posture can do to tell someone with Alzheimer’s that it’s time to go to the bathroom or that someone has come to visit.

What body language can communicate, however, is much more important. Your body language conveys care, it conveys trust, and it conveys love. For a person with Alzheimer’s, these messages are extremely powerful. They make a person feel valuable, cared for, and comfortable.

Someone with Alzheimer’s might not be able to understand the words “I’m here for you,” or “You can trust me,” or “I love you.” But body language offers a way to make these messages clear. For those of us who care for those with Alzheimer’s, it’s an invaluable tool.


Visiting Angels is America’s choice in home care. Since 1998, Visiting Angels locations across the country have been helping elderly and disabled individuals by providing care and support in the comfort of home. In addition to senior home care and adult care, Visiting Angels provides dementia care and Alzheimer’s care for individuals suffering from memory disorders. There are now more than five hundred Visiting Angels locations nationwide.

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

How to Care for an Elderly Hoarder

How to Care for an Elderly Hoarder

Have you ever passed by one of those houses where the crooked garage doors are barely holding themselves together over the heaping bulge behind them?

Then one day, on your usual stroll of the neighborhood, those garage doors are popped wide open for the whole world to see. You shudder and gasp aloud. You don’t want to linger for too long because it is rude to stare, but you silently wonder how someone could live with floor-to-ceiling clutter that has been amassed for decades.

If you are only too familiar with this sight, let me offer you some reassurance that there is a path to purging. When I said yes to the job of caring for my elderly mother, I had no idea I was also saying yes to care for a house that had been equally badly neglected.

Driving up to my childhood home where my mother still lived nearly 35 years later, I see the lawn is no longer green, nor mowed. It resembles something out of the savannah that my father would have tackled in earnest at the first sighting of crabgrass—had he not passed away thirteen years earlier.

When my disheveled, eighty-five year old mother greets me at the door with her warm toothless smile and welcoming hug, I can tell there will be more moments like what Dorothy experienced in Oz when she said to her dog, “Toto, we’re not in Kansas anymore.”

Nothing is recognizable to me.

It’s not like we ever lived with white-glove standards growing up, but we were a tidy family if you didn’t count the mud and blood the brothers were always traipsing in.

But, on this day my childhood home is operating at the highest level of dysfunction. Of five bedrooms, four are being used as attic space where wardrobes from thirty years earlier are sprawled across the floor, mixed in with old blankets and petrified briquettes of cat doo-doo. All I can think to myself is who is going to oversee the gut job needed on this house?  Tearfully, I am afraid I already know this answer.

The garage looks worse than what you might imagine.

Even more disconcerting is the pile-up of paperwork saved since my father’s death. My old bedroom is filled with envelopes containing statements stuffed into them, then packed into shoeboxes piled onto the bookshelf, or tucked into drawers, or peeking out from beneath beds.

Depression-era parents. Need I say more? Thank goodness my mother is willing to put her trust into what she calls my good judgment. Health, Safety, Style becomes our mantra for the care that will need to go into her—and her home.

Here are the ABCs to beginning any difficult task: Assess, Begin, Carry On.

Assess

Every frontiersman knew to survey the land. What is the kind of stuff piling up, memorabilia or junk? Who will miss it? I feel a sense of responsibility to the other siblings to preserve their trophies, yearbooks, and kinder artwork—theirs to ditch if they so desire.

Begin

Before you can salvage anything, you need a good staging area.

Step 1: De-clutter the garage first.

  • Clear out discarded toys, bikes, and seldom used items
  • Find the Salvation Army or Goodwill that will pick up
  • Recycle nuts, bolts; shift furniture, find the floor, push a broom
  • Get rid of rusted shovels and the plethora of old tools
  • Clear off every shelf—discard paints and other chemical laden cans legally
  • Shred-It will make a house call affordably, taking mere seconds to do what will take you months with your home machine that will jam frequently

 

Step 2: Create smart centers within your garage

  • Laundry station-move an old bookshelf to store supplies
  • Errand station—use labeled boxes (library donations, record store, Goodwill, Accountant, etc.) as a reminder of which errands to still run
  • Paperwork station—tower plastic crates labeled for archived financial statements. Caution: never throw anything away until you understand what it means to your parent’s financial picture. I found wealth buried in the 85th box.

 

Step 3: Preserving childhood memories for siblings (3-piece set for each child)

 

  • 1) 45-gallon crate 37’L 27”H to store small furnishings, trophies, plaques et al
  • 2) Tri-fold board to stack on top of crate for holding Kinder art, or the like
  • 3) Colored document pouch, zippered, 8.5” x 11” for important papers, flash drives, or special letters home saved by parents
  • Move an old dresser cluttering a bedroom to create new hub for sibling items

 

Carry On

Your job is not yet over. Paperwork sorting becomes my passion.

Step 4-Active vs. Archive File statements accordingly.

Active is for accounts paid in the past year. Scrutinize each to make sure your elderly parent is not experiencing financial abuse. File current month’s statement at front, older months behind.

Archive older statements from previous years. Keep these only for gleaning how money changed hands through investing or bank accounts. Cluster 2-3 years of old statements into one lidded plastic crate the size of a bankers box. Label front as “Archive 2014-2017”. Repeat this until all of your bundles are in separate bins. Once you get a handle on the Active, return to the Archives at your leisure to understand financial history.

Efficient closet makeovers 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

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

How to Address Mental Health Issues in the Family with Your Child

How to Address Mental Health Issues in the Family with Your Child

Mental health issues can strike at anytime, without warning and with little regard for your responsibilities. I knew my husband suffered from panic disorder when I married him. However, it wasn’t until a particularly stressful period at work that it became apparent that I was yet to see the worst of his condition.

By this point, we had a son, and it was clear he couldn’t understand what was happening to his daddy. Fortunately, children are smarter than we give them credit and can quickly adapt to take charge of situations, as long as they feel comfortable.

I was hesitant about explaining mental health to my son, but, since we had the conversation, he’s my biggest helper and an incredible support to his father.  

If you’re struggling to broach this difficult topic, here are a few pointers:

Don’t Baby Them

Children see a lot more than we realize. Attempting to keep your kids in the dark if they have a mentally ill family member is a terrible tactic. Not only will they still see the difficulties, but they also won’t understand them, and this will quickly turn to fear.

Being as honest as you can with your child prevents them from feeling isolated. Particularly if the sufferer is a primary care figure; it’s actually easier to cause long-term trauma by shutting them out of the situation than by exposing them to it. It’s easy to feel like they’re too young to experience these sorts of things. However, knowledge is power – even when you’re little – and understanding strange behavior will allow them to still feel safe and in control.

Use Metaphors

However, there is a slight caveat to point one. Mental illness is complex, and most children’s brains aren’t developed enough to understand the intricacies of brain function. These means it’s important to find a relatable metaphor and description.

A personal favorite in our family is the ‘Hulk’ metaphor. As panic can quickly turn into rage and mental illness sufferers can lose their cool quickly, having a way to explain this to our son without him feeling at fault quickly became essential. The Incredible Hulk is a superhero who turns into a raging monster when he’s angry. This comparison is not only relatable and understandable, but it also comes from the child’s world. Using metaphors based on cartoons and comics can be an incredibly useful tool to help them see what having a mental illness means.

Encourage Research

If you’re in this situation, it’s common to worry about information from other sources. While you can control how you address things with you child, there are many out here offering less-than-helpful information. However, here is another area where you child might surprise you.

Especially if they’re older, allowing their own research will let them feel like they can take control and will significantly increase confidence. Just to be sure to engage in discussions about their findings and encourage open dialogue. If you’re worried about internet safety, you can also install parental controls or a proxy service to protect them from online criminals.

dad and his kids working through feelings by coloring together

Ask Their Feelings

The most powerful dialogue about mental health goes two ways. It doesn’t matter how well you word your explanation, if you aren’t receptive to your child’s thoughts and feelings, they can quickly end up feeling confused or isolated.

There are a few important check-in points for children:

 

  • When you first offer an explanation, ask how they feel about what you’ve said.
  • After particularly bad and potentially frightening attacks, talk about their emotions and quell their feels
  • If possible, get the sufferer to speak with them so that they can understand you can still be a ‘normal’ person and have mental illness.
  • The media can offer negative views of mental health patients.  If you child is exposed to this, sit him or her down and discuss how they relate it to the situation at home.

 

While these points are a great place to start, in reality, it will always help to talk to your child about their feelings towards mental health. Having this open conversation means you can keep tabs on their responses. Plus, they will feel more comfortable to raise their worries and fears in the future.

Give Them Responsibility

Anyone who cares for a mental illness sufferer will know how quickly you can feel powerless. If you sincerely love someone, it’s difficult to see him or her in emotional distress. This lack of control can be one of the hardest elements to being a caregiver.

Although often overlooked, this fact is still true for the children and young relations of the mentally ill. They want to do what they can to help with the situation, so allowing them a small level of responsibility is key. Show them the medication schedule, and ask them to help remind you, or identify a small job they can do if there’s a particularly severe episode. This could be as simple as getting some pillows or a blanket or making a cup of water. Not only will it help their confidence with the situation, but it will also stop them from panicking if things get tricky.

Many put off addressing mental health issues with their children because they feel it will be too difficult. However, this is often not the case. Young people are incredibly resilient and will continually surprise you in their empathy to mental health patients. If you’ve been delaying this talk, follow these tips and ensure your child has a clear picture of their role in the situation.


 

Caroline Black is a writer and blogger who has become a primary caregiver for her sister. She writes about health, as well as sharing her experiences and insight with mental health and how it affects those around them.

What’s your type?

What’s your type?

Moms of special needs kids come in all shapes, sizes and types. What kind of (super) mom are you?

rebecca and her husbandRabbi Rebecca Einstein Schorr blogs at This Messy Life.

This former career-driven mother of three became a reluctant stay-at-home-mom when her autistic son and his two adorable sidekicks needed more from her. Formerly known for her popular blog, Frume Sarah’s World, Rebecca Einstein Schorr has embraced the challenge of stepping off the rabbinic pulpit and into the kitchen – some say for the very first time. The transformation from a religious community leader to what her kids call a “house-mother” has been nothing short of life-altering.

You can’t be there every second, but this app has your back

You can’t be there every second, but this app has your back

Caring for seniors requires knowledge, skills, and stress resistance. Leaving our loved ones in the hand of others requires trust. It is my honor to talk to Jacqueline Thomas, a professional caring staff who uses her old phones to build a team with the families of the people she cares for.
Her stories have testified that creating and sharing a video connection is an open door that fosters trust between caregivers, patients, and their family members. Let’s take out our old phones lying in the drawers, bring them back to work, and make caregiving a bit easier.

I have been working as a caregiver in nursing homes for years. This job is rewarding because I can care and provide comfort for people who can’t be taken care of at home anymore. However, it comes with many different challenges.
Some of my patients (termed as “consumers” in our service) are non-verbal. They have problems expressing their wishes as well as problems. Even though I am supposed to be available at all times during my shift, I do sometimes have to go to the kitchen to prepare for food, for example. I have learnt that anything can happen in a second in my job, so I need all the help I can get. Alfred is my recent discovery. It is an app that turns spare phones or tablets into cameras. Just sign in with Gmail, and I can watch the patient/consumer or receive Motion Detection notifications even when I am somewhere else in the house.
I set a Camera Phone up in front of a Teddy bear by a non-verbal patient’s head so that I can always keep an eye on him. Lucky for us I did. When I was heating food up in the the kitchen the other day, I saw on my phone screen that he had a seizure. I quickly rushed back to his side and handled the situation. It was a close call!
It isn’t necessarily easier to take care of patients/consumers who are able to speak. Some of them refuse to communicate, so I have to observe them closely. Patients/consumers with dementia could forget where they put things and whether they ate. If they complain to their family, who in turn complain to the nursing home, it could easily cost me my job or even license.
While I installed Alfred to ensure my job security, what I have found is that it fosters trust between me and the patient’s family. Rather than waiting for them to take the initiative to surveil me, I have added them to Alfred’s Trust Circle so that they can check on the patient/consumer as well as my interactions with the patient/consumer. It makes us a team.
My patients/consumers might not get better, but I am proud to provide them with dignity and comfort. It’s great to do this with a little help from Alfred.

Renee YEH is the founder of Alfred, an app that allows anyone with an old cell phone to use it as a motion detected home care camera.
Professional Caring: How To Get Back To Work After Taking Care Of A Loved One

Professional Caring: How To Get Back To Work After Taking Care Of A Loved One

Caring for a loved one who has special needs or has become ill or infirm is a big job. Not only is it physically demanding, it takes a toll emotionally, as well. It can be difficult to watch someone you love suffer through painful issues; yet for many caregivers, knowing that they can provide some measure of relief by helping them with daily activities often makes the job easier.

If you’ve cared for a loved one and had to take time off from the workforce to do so, you might be thinking about finding employment again. Now that you have experience with caring for someone with special needs or an illness, there are many paths you can take that involve helping someone.

There are some steps you’ll need to take first, however. Here are the best tips on how to get started.

Figure out your goals

It takes a special kind of person to take care of someone who cannot take care of themselves. It’s a very demanding job, and it can be difficult to perform physically if you don’t have help. Ask yourself what your goals are and think about how your daily duties might affect you. Patience, kindness, and emotional strength are all required attributes for a caregiver to have.

Do some research

Before making any decisions, do some research on the field you want to enter. Find out what it takes to become a licensed caregiver in your state and decide what area you want to focus on. If you want to provide medical care for someone, you might need a nursing degree. If you’re thinking about taking on a younger patient, you may want to consider taking some child psychology classes. If you want to provide general home care, like cooking, housekeeping and errand-running for someone who still has some independence, it’s important to know what to charge so you’ll be competitive in the market but not sell yourself short.

Talk to someone with experience

You may have experience taking care of a loved one, but providing care to someone you don’t know is a very different job. Learning their likes and dislikes, their habits and needs… it can all be a little overwhelming at first, especially if you are hired by a family who has specific guidelines for their loved one’s care. Talk to someone who has experience in the professional caregiving field and get some feedback. Don’t be afraid to ask questions and find out what they like and don’t like about their job. Again, you have options in how you can help care for someone, so finding out what this kind of job really involves firsthand may help you choose the right fit for you.

Make some contacts

Once you’re fully licensed to become a caregiver, it’s important to start making contacts in the healthcare world. Consult your local department of health services to find out if there is a registry system you can be added to that would allow clients to find you. You can also contact health insurance companies and ask about being added to their list of care providers.

One good thing about pursuing a career in care is that you have plenty of experience under your belt now, even if not formal experience. Surely this will help you as you pursue caregiving in a formal manner. It will certainly help you in any job interview scenarios.

 


By Jim Vogel

Jim and his wife, Caroline, built ElderAction.org after becoming caregivers for their aging parents. He enjoys sharing valuable information with seniors and their caregivers.

Photo via Pixabay by Maxlkt

Finding my reset button

Finding my reset button

It has taken me almost 10 years to figure out that I actually have a reset button and that I’m allowed to hit it when needed! My husband has a C4/C5 spinal cord injury and as his primary caregiver for going on 10 years, along with caring physically (alone) for our almost 10 year old, I’ve hit my limit often.

However, every time I did, I pulled myself back from the brink only a little thinking it was all I needed and all I could allow myself at that time. I mean, how do you, as a caregiver, allow yourself respite time when your husband cannot take care of himself AT ALL and when your young child needs you desperately? So really, I didn’t allow myself time and mentally wasn’t in a place where I could allow it to happen. Everyone told me to take time and everyone told me I needed it and deserved it but until I believed it, it wouldn’t happen.

So hitting the reset button didn’t actually happen until I understood and accepted that I needed to do it and needed to allow myself to do it. Sure, my husband told me to take the time but again, until I (me, myself and I) allowed it to happen, it wasn’t going to happen. So now, when I know when I get close to the breaking point (I get short and angry and mean with my family), I need to totally step away from the situation.

Sometimes, the reset is a nap. Sometimes it’s a car ride around the block. Sometimes it’s a walk down the driveway. Sometimes it’s a night away if all works out as planned! But most times, it’s 15 minutes alone in my room doing deep breathing and stretching. I’d say yoga but it’s really just stretching… I sit cross legged on my dog’s bed and lean as far forward as possible and stretch my back out and breathe… I used the Headspace App to meditate for a few weeks and now, when I need the time, I can sit in my room, stretch and breathe and do a 5 minute faux-meditation.

That’s usually how I reset since while I’d love respite care, I know that I will never, ever be okay with doing that knowing my husband and my daughter need me. So if the time I have to take for myself is only a few minutes, that’s okay since I know I can calm myself down and relax and then get back in the game.

Erin Hayes

A stolen childhood

A stolen childhood

I know I’m not supposed to feel guilty, but I do.

When we were told that the baby I’m carrying would have severe disabilities, we knew abortion was an option but didn’t seriously consider it. This was our baby, no matter what.

But that choice won’t just affect my husband and I. It will also affect our daughter.

Our decision to keep this baby, to support in every way we possibly can, and love it forever means that our first daughter will never have the childhood we envisioned for her.

I feel like we’re stealing her childhood from her.

The internet is full of beautiful stories of the siblings of people with disabilities. I’ve been reading them when I can’t sleep, which is a lot lately. I find solace in them.

But I know our daughter, my husband, and I will have to make sacrifices. My husband and I made that choice together. Our daughter will have to live with our decision.

I hope one day she’ll be happy to take on that responsibility when we’re no longer able to.

Julia Morris

Filial piety and the rural/urban divide

Filial piety and the rural/urban divide

Caring for the older generation

Qi Jianguang feeds his father Qi Wenjiang at the farmhouse he rented near the construction site where he works.Du Huaju / Xinhua Son honored for looking after his partially paralyzed father For many young Chinese living in the country’s rural areas, the only way to find a well-paid job is to leave their hometown and move… (more…)

How you can support friends and family who have chronic pain

How you can support friends and family who have chronic pain

As someone suffering with chronic pain for nearly 8 years, I can tell you it’s never an easy day. Every day and sometimes every hour can be different, I have no control over my body and how it feels from one moment to the next. Most of the time my mind wants to do things, but my body doesn’t allow it. I know that many caregivers and loved ones have asked or thought how can I push/encourage my loved one with chronic pain in a “good” way? I don’t want to push too hard, but I also don’t want my loved one to miss out.

Let me be the first to say we really do not like the fact we can not make plans anymore. We really do want to be an active participant in our friends and families lives. We do have the best intentions when we say we will be there and when we can not it really does bother us.

I decided to ask the chronic pain community how a caregiver or loved one can encourage someone with chronic pain. Here are our top answers:

 

Be Supportive

“Help out around the house or with dinner so the person isn’t too exhausted to do other things. If it’s an event type thing the person wants to go to, make the person feel like they can be honest about how they are feeling. Let them know they will not let you down if they have to leave early.”

“I’ve been blessed with some amazing people in my life that help. Support is the key. I always think of the spoon theory. I only have a certain amount of spoons, and if I want to get out to do something fun, I need the energy, which is very sparse during a high pain day. I get the most help with people offering to take my kids for the night, bringing meals over, helping with housework. I have a hard time asking for help, but this is what I’d ask for. “

“My husband and young adult kids would buy me little things to encourage me. For example, Superwoman PJ’s, because I was doing therapy at home as well as at a place, and they saw how difficult the smallest task was. They didn’t treat me as disabled, but they were always there to make my life easier in trying to regain movement.”

“Pay attention first. Be a steady shoulder second. Understand that everyone is different and it’s about the individual’s ability to push past the pain. If you can do that then you will know how to push/encourage them in a positive way. After all, it may appear we need a push or encouragement, but really what we need is support. Be supportive and that will eventually give us the encouragement you are looking to give.”

“Read as much as you can about what they are coping with. Knowledge is the answer.”

Communication

“Communication is very important. A phone call or simple text asking how you are doing is everything. Keep communicating and supporting even if the person in pain keeps declining your offers to get out of the house to do something. Support is key.”

“For an event: Listen to why they are hesitant about attending, is it an issue that could be problem solved or is it an emotional issue/fear of showing their pain to judgmental eyes? Do they know they can count on you if they become overwhelmed/exhausted or if they are faced by a person offering up free advice without understanding what it took for them to even leave the house? Are you willing to be their companion and their guard dog? Do they know this, deep in their heart do they trust this about you? This is how you push/encourage them in a good way. You let them know that you’ve got their back.”

In closing, the best way to encourage us and push us in a good way is to be supportive and keep communication open. Come up with a plan, but keep things flexible. Please remember we are already hard on ourselves and we truly do not like missing out, making us feel guilty about it is never the answer.

 


About the Elizabeth pain

Elizabeth Pain has suffered with Complex Regional Pain Syndrome for nearly 8 years along with other pain conditions. She has been married to her best friend for 14 years and a mother of 3 amazing children. She became active within the chronic pain community nearly 7 years ago when she started an online support group for those suffering with CRPS and their family members. She finds comfort in helping others and has found writing helps distract her from her pain. Nearly 2 years ago she branched out and started a website for all chronic pain conditions called The Unbroken Smile.

Physically and emotionally exhausted from long-term caregiving

Physically and emotionally exhausted from long-term caregiving

Sometimes you can’t get help for caregiving, because no one is willing to step in. Even professional caregivers.

We are 68 years old and caregivers for our 40 year old Autistic daughter. She is high functioning and also obstinate and difficult to live with and work with. As we are aging, we are physically and emotionally exhausted and are unsure how our daughter will be cared for when we can’t do it.

She is a “behaviorally abusive” to us, making it very difficult to enjoy her. She can turn a good time for her (or should be) into a nightmare of hitting, swearing, pounding on herself and throwing objects. She is on medications to help, causing her to gain 60 lbs, making her tired all the time and not helping with her with her temper and outbursts.

Many things can trigger her outbursts, including not getting her drink filled to the top without ice. She will go into a rant and show her fists to restaurant servers saying they should be fired. She worries that someone will sit in “her seat” or “touch her stuff” as she works herself into an out-of control state. No words or actions seem to defuse the situation.

As caregivers we are constantly living in a state of foreseeing and correcting her environment to avoid a major outburst. We are emotionally empty and feel helpless. Other caretakers we have had help us will say, “how to you do it? You must have the patience of Job!”

Early on babysitters said our daughter can only be cared for in “thirds”. Anyone having to be with her more than that can’t handle her. Guess what? As parents we are in charge of her 24/7.

Feeling hopeless we are both very depressed. Others around us don’t see this as we don’t talk about it as we would quickly lose our friends.

We have had several psychiatrists and psychologists work with us and with our daughter, but none have been able to provide us with “long term” results. Let’s just say that many traditional methods do NOT work.

I could list many experiences we have tried, but I’d be writing a book. We have had many supportive people in our lives, but it doesn’t help as we face our aging future.
Desperate and tired parent caregivers!
Anita & Gary
Mother’s Day activities for active seniors

Mother’s Day activities for active seniors

Some of us care for a mom who isn’t able to participate in a big celebration, but other seniors are able to get out and active with some accommodations and planning. Family caregivers looking after their moms can make Mother’s Day extra special. After all, these women only deserve the best in life, considering that most of them experience both financial and health issues during the twilight years. Here are a few suggestions:

1) Travel

To be able to wander and experience the many joys of life is a treat that’ll delight both caregivers and their mothers. Travel is a wonderful dream to achieve, especially during the retirement years. Of course, prioritizing a senior’s safety during a trip should always be practiced.

elderly woman with her dog in a park resting on a bench

2) Learning Something New

The golden years offer a lot of opportunities for mother’s to experience. Caregivers can celebrate Mother’s Day in a productive and enjoyable manner by introducing something different from the usual. From crafts workshops to learning a new skill (such as being able to manage a blog, driving, or enrolling in a short course), the opportunity to continue learning during the twilight years will both be a fun pursuit of new knowledge and a way to help stimulate a senior’s mental health.

3) Earn Money

Another way to observe Mother’s Day is for a caregiver to help his or her mother earn some income. This can be done by checking local listings for senior employment opportunities and presenting the options to the mother. Another is through various ways to earn online, such as ads on a blog, online writing, or being a virtual assistant. Introducing the idea of how to make money even during retirement for mothers can be a great way to uplift them.

4) Spending Time with Each Other

More than anything else, seeing Mother’s Day as an event to truly spend and make the most out of the time with mom is a great mindset and focus for a caregiver to have. Perhaps this is what matters the most: considering the blessing of being able to care for a mother over the many challenges a caregiving role has.

Do you have other suggestions to include? Let us know below!


By Leandro Mueller

As the Online Content Director of FreeMedSuppQuotes.com, Leandro Mueller aims to push for awareness and promotion of the many benefits of Medigap insurance plans in the market. He hopes that his work will help boomers and retirement industry experts alike in their lives.

 

 

 

 

 

Elder Financial Abuse Hurts Caregivers, Too

Elder Financial Abuse Hurts Caregivers, Too

The emotional and monetary consequences of elder financial abuse take a toll on caregivers as well as seniors directly victimized, Allianz Life said Monday in releasing findings of a new study. A vast majority of both active and prospective caregivers reported that they had incurred costs when their elder was financially abused, an average of $36,000,… (more…)

What I’ve Learned as a Childhood Disability Doctor

What I’ve Learned as a Childhood Disability Doctor

Are children who have a physical disability as content and satisfied with their lives as children who don’t? Yes!  In this enlightening talk, Lisa Thornton, a physician who specializes in the medical care of children with disabilities, will share insights she has learned from the parents of her patients who raise happy, well-adjusted children.

Lisa Thornton, M.D. is a mom and a Pediatrician who specializes in the care of children with disabilities. She is passionate about providing reliable health information for families and believes that childhood is the best time to develop lifelong healthy habits for the body and mind.

She is Medical Director of Pediatric and Adolescent Rehabilitation at LaRabida Children’s Hospital and Schwab Rehabilitation Hospital. She is an assistant professor in the departments of Pediatrics and Orthopedic Surgery & Rehabilitation at the University of Chicago Pritzker School of Medicine.

Dr. Lisa has provided health commentary for numerous TV shows and other media outlets. She has lectured to corporations and academic institutions and has led audiences to a greater understanding of a variety of topics including childhood obesity, childhood disability, and overall health and wellness. She is married with 3 children and has a brother with cerebral palsy.

My Life: Mimi L

My Life: Mimi L

What’s keeping me up at night?

Worry about finding a good fit for my son in the community. Somewhere where he will be accepted, appreciated, and feel good about working for. It’s a hard struggle.

Worrying about my dad. When he gets the hiccups at night. His really really bad teeth. The fact that he runs out of breath while he talks. How much longer is God going to let me keep him? How to keep from reacting when he pushes my buttons.

What am I really proud of right now?

My son. How much joy and unconditional love I get from him. How he makes life fun. Learning more about Autism Spectrum Disorder so that I can help others understand my son more.

What keeps you going when you feel like giving up?

My son. The joy and love that I get from him keeps me going through all of it. The bad, the ugly, the wonder, the joy, the huge love that I feel for him, all keep me getting up every day.

Mimi Leow

Hey, doc, what will that cost me?

Hey, doc, what will that cost me?

No matter how great your physician is, there is one question he or she is unlikely to answer: “How much will that cost?” It is not really doctors’ fault. Medical schools and residency training programs have traditionally shied away from teaching costs. For the most part, costs remain hidden even from many practicing physicians. Some would… (more…)

Why do we accept this behavior?

Why do we accept this behavior?

This isn’t going to be a popular opinion. I’m not here to get you angry. If you don’t want to read about carees who are emotionally abusive, skip this post.

Why is it somehow acceptable for people who need caregivers to be emotionally abusive?

Some care recipients have had strokes, dementia, or TBIs alter their behavior. Inappropriate behavior with a medical cause is not what I’m talking about.

Some people are just assholes.

My mother wasn’t the best parent, but she took care of me. Not like some other parents. I had a good childhood.

We were never close when I was young and we weren’t close once I was an adult. It was clear she favored my brother, but so many parents do. We did the obligatory parent/child things. Spent the holidays together.

I avoiding spending much time with her, because I found her to be a toxic person in my life. I didn’t need her criticisms of my weight, my choice of life partners, how I raise my own children. I have a happy marriage and children who are doing well and love me, but she was never happy with us. She made her disapproval known, not only to me, but to anyone within ear shot.

If she wasn’t pointing out my faults and failures, she was boasting about my brother. It always struck me as curious, since he’s usually in-between jobs, struggling with his drinking, and breaking up with his latest girlfriend. But this was just something I needed to accept and I did my best.

My brother calls me when he needs money. Or every year or two for bail money. But mostly he and I are both fine to live our very different lives. I wonder what our relationship would be like if she hadn’t coddled him while belittling me, but I do my best not to waste time thinking about it. It’s just a way to understand and accept why my brother and I were never close. He grew up being told I was a failure, how could he feel any differently?

My husband and friends all seemed to understand that while I didn’t want to cut my mother out of my life, I needed to keep my distance. Rather than being a source of support and wisdom, like some mom in a Hallmark card, she was a source of stress and self-loathing.

Few of us have Hallmark card families. I’m certainly not the only one with a strained relationship with a parent. It made me sad sometimes, but it was just one thing in a very full, complex life. I’d learned to accept it, as much as I felt I ever could.

And then my mom got cancer.

I’d worried about what would happen when she got old. I kind of knew it’d fall on me, but I’d planned for this by saving for both of our retirements. I anticipated writing cheques and managing paperwork when the time came. I had a good decade — or three — before I’d need to hire home health aides and companions and whoever else. Plenty of time to save. Plus, she has savings of her own.

Getting cancer at 50 was not part of this plan.

I guess it’s just as well, since she refuses to accept help from anyone but me. Why? Because she says it’s my responsibility.

She tells her friends, her pastor, anyone who asks that she’s just fine. She doesn’t need any help. She tells my brother not to worry about her.

She demands I move in with her. I agreed to stay with her while we was recovering from surgery and going through chemo. I wouldn’t have wanted to go through that alone.

Oh, if only I’d thought about what I was getting into! She turned into an evil princess. She demanded I wait on her hand and food, around the clock.

I knew I would need to do all the paperwork, run all the errands, do all the cleaning, and cook all the meals. I’d signed on for that. I didn’t expect to do them while she screeched bloody murder in the background. She wants these things done, demands that they’re done, but then resents any moment I’m not at her feet, waiting for her next command.

Her doctors said it would be good for her to get out of bed, get some exercise, get back to doing things on her own. She’s not supposed to be bedridden. But the bed is her throne. She’ll only get up on her own if I take that goddamned bell away from her.

It’d be one thing if she were simply demanding. But she’s also mean.

The names she calls me! She’s spent my whole life making it clear that she thinks I’m not pretty enough, not smart enough, not thin enough. They used to come as snide comments and backhanded compliments. Now she just yells at me for being a fat big, an ugly stupid lazy bitch, a useless good for nothing unappreciative child who ruined her life. Because her tea is too hot or not hot enough. Because she wanted the vanilla ice cream with the flecks of vanilla in it. Because I was busy folding her laundry and didn’t rush to her immediately when she wanted me to change the channel.

She gets up out of bed to wake me up to tell me to get her something that was on her nightstand.

All the yelling must take so much energy.

It took me energy to not just walk away. And then I saw her at the cancer center, walking around, laughing, getting up to get things for herself.

Why was I forcing myself to stay and take care of this horrid woman when she’s perfectly capable of taking care of herself?

Yes, as someone going through chemo, she could use some support. But will she die if I’m not there? No. She’ll simply save herself some yelling.

And so I left. Two months of her constant yelling, not letting me sleep, and telling me how worthless I am was enough for me.

My whole life, people have heard stories of my mother — or been lucky enough to meet her — and have reassured me that I was right to keep my distance. She is the classic toxic person all those women’s magazines warn you about.

But now that she has cancer, these same people are giving me a hard time about not staying to take her abuse.

Having cancer doesn’t make it okay to be an asshole. You can get frustrated, be upset, snap at someone in exhausted frustration and fear. But you can’t be mean to people for the rest of your life.

I read somewhere that in Cinderella it was originally the mother who was evil, but they changed it to an evil stepmother later on when the idea of motherhood became sacred. It was no longer acceptable to believe that a mother could treat a child that way.

I’ve spent my life not being good enough for her. I guess this is just one more thing to add to the list: abandoning her to die of cancer.

Giselle O.

My Life: Colleen R

My Life: Colleen R

What’s your life really like?

Really, day to day, nothing to write home about. I am blessed that my husband requires only a small amount of care during the day and my job is close by. So I can run home at lunch and feed/toilet him if necessary. Then back to work, where people complain about their husband not being good enough for one reason or another and I just want to smack them.

Friday comes and I have begun to measure that time so that some of it is satisfying to both of us, not just him. That was a huge step for me since most of the time I was worried about entertaining him during all of my spare time. This is the quickest way to experience burn out.

Now I take lessons, I plan adult activities for myself, etc. So in that respect things are better. Since the stroke in ’09, he has learned to repeat a few phrases but still remains unable to communicate anything but essential needs.

What’s keeping you up at night?

Mostly the need to communicate with someone, anyone, anywhere, about anything. I’ve tried a multitude of different avenues. Most are disappointing to say the least.

I plan to not be alone someday, but there is no way of knowing when that will be. Until then I live with a person who barely resembles the man I was once in love with. Instead I see a person who needs me more than I have enough energy to serve. But everyday I do, and every night I wonder how much longer or will I die before him from exhaustion.

What are you really proud of right now?

Right now I am really really proud that we are mostly out of debt. I’m proud of my children and my grandchildren and that we have for the most part, a good relationship. I’m proud that I can know that I am doing what I am supposed to be doing no matter how stressful or how discouraged I become.

What keeps you going when you feel like giving up?

Humor, Humor, Humor. I love standup comedy, I love to hang out with funny people who can help me laugh at all the problems and even laugh at myself.

Music, as much as possible. I retreat into songs that have deep meaning and that were written during times of sadness but speak of better times to come.

Reading about people who contributed greatly to society against all odds.

Monster movies.

Ultimately I pray and ask for forgiveness and for a heart of thankfulness. Both of which I have been given abundantly

Music Therapy: Planning Ahead During Early-Stage Alzheimer’s

Music Therapy: Planning Ahead During Early-Stage Alzheimer’s

When a parent, spouse, or relative is diagnosed with Alzheimer’s, it can feel as if you’re starting an uncertain journey without any sort of roadmap. It’s a feeling that can persist even as the disease progresses. Often, caregivers look back during the later stages of Alzheimer’s and wish they’d taken earlier steps that would have made late-stage caregiving easier.

One particular area where this can crop up is music therapy for Alzheimer’s sufferers. In recent years, music therapy has been the subject of increased media attention and scientific research. There is now widespread anecdotal and data-driven evidence that music therapy is one of the most effective ways to reduce stress and improve the mood of Alzheimer’s sufferers, particularly those in the mid-to-late stages of the disease.

One of the biggest challenges to music therapy for Alzheimer’s patients is choosing the right music. That’s because the most effective music therapy programs use a patient’s favorite songs from their childhood, teenage years, and early adulthood. Even when late-stage Alzheimer’s has claimed other memories, the beat or hook of a once-familiar tune can dissipate stress, encourage cognitive activity, and transport sufferers back to the feeling of happier times.

If you are caring for a loved one with Alzheimer’s, it can be hard to find the right tunes for music therapy — especially if you start searching in the mid-to-late stages of the disease. By this point, it will likely be more difficult for your loved one to recall the artists and song titles they were most fond of growing up. More important, it will be harder for them to have the kind of conversations that make it easier to build a music therapy playlist.

If you have someone close to you who’s recently been diagnosed with Alzheimer’s, taking steps now could make it easier to care for your loved one in the later stages of their condition. To find the artists and songs your loved one responds best to, consider the following suggested steps and resources.

Start with Conversation and Research

The first place to start when researching a loved one’s childhood musical tastes is with conversation. Even if your loved one can’t remember all — or even most — of their favorite artists and songs from their early years, they will likely be able to remember a few that you can use as a launching off point.

It’s not necessary to have a single long and intensive conversation. In fact, it may depress your loved one to dwell on preparations for the progression of their illness. If this is the case, you may wish to have short conversations, or ask casually without bringing Alzheimer’s into the conversation. On the other hand, your loved one might enjoy the trip down memory lane, in which case you should feel free to mine their memories.

Once you’ve pinned down a few of their favorite songs and artists, you can turn to the internet for further research. These days, it’s easier than ever to explore a genre or decade of music. Whether you’re using links on Wikipedia, a music streaming service, an oldies satellite radio station, or a combination of all three, you can begin researching the sort of singers, bands, and songwriters that your loved one grew up listening to.

As a general rule, focus on the twenty-year period between your loved one’s fifth and twenty-fifth birthdays. Find out what kind of songs were on the radio at that time, and which artists were most closely associated with the ones your loved one enjoyed. You can use links between Wikipedia articles, suggested artists on streaming services, or whoever’s up next on the oldie station to make these connections.

kitchen radio with a cup of teaSee What Your Loved One Responds To

Once you’ve brainstormed a list of possible artists and songs, start putting playlists together to share with your loved one. Unless your loved one is invested in the project, don’t force him or her to sit down with headphones and a notepad. Instead, play the songs as background music while doing tasks together, during relaxing moments, or while driving in the car.

At this point, see how your loved one responds. If your loved one says they remember certain songs or certain artists, make a mental or physical note of which ones. If they seem to perk up at the sound of a particular tune, keep that song in mind for the future. If they’re humming along or bouncing their knee to the beat, that’s even better.

During these listening periods, you’ll start to get a better sense of which artists and genres your loved one connects with most. You can then start repeating this process, using the songs and artists your loved one likes to get a better sense of which other songs and artists they might be inclined toward. You can then go back to your research to brainstorm new songs to try out.

The more time you spend on this, the more you can become familiar with the music from your loved one’s earlier years. As you become better versed in the music of the time, you’ll be able to make smarter and more educated guesses about your loved one’s tastes. You might also find that you begin to develop a deeper bond with your loved one through this process, giving the two of you something to talk about that truly hits home.

Create Personalized Playlists for Music Therapy

Whether your list ends up getting narrowed down or dramatically expanded, you’ll soon be able to generate a full collection of songs for future music therapy. At this point, you can begin to put half-hour or hour-long playlists together, selecting the songs that you think will be most joyous or most calming for your loved one.

Of course, there’s no need to shelve this collection during the early stages of your loved one’s Alzheimer’s. If you’ve found that these songs have had a positive effect on your loved one, you should continue to play them and enjoy them together.

You may even wish to take more trips down memory lane. These days, it’s just as easy to research old radio shows or movies that your loved one may not have heard or seen for several years. While plot-driven narratives are hard to follow for mid-stage and late-stage Alzheimer’s sufferers, reliving these memories can be invaluable for those in Alzheimer’s early stages.

radio on console in living room of a hospice center

When the Time Comes, You’ll Be Ready

By doing this kind of legwork during the early stages of Alzheimer’s, it is easier to provide music therapy for a loved one when they reach mid-stage or late-stage Alzheimer’s. While this can be an extraordinarily difficult time for you and your loved one alike, it can be made easier if you’re able to provide your loved one with moments where he or she feels comfortable and at peace with the world.

At this time, it’s important to make sure that your loved one is comfortable when listening to his or her music. Consider investing in a padded pair of over-ear headphones, which can make it easier for your loved one to focus on his or her music. Also, remember that music played at loud volumes can be stressful or disorienting for those suffering from memory disorders. Make sure to test the volume of the music before playing it for your loved one and try turning it down if the volume seems to agitate him or her.

In addition to music therapy, there are a number of other therapeutic activities and exercises for those with Alzheimer’s. More and more Alzheimer’s caregivers are integrating art therapy and nature therapy into the care they provide for Alzheimer’s sufferers. These therapies — either in conjunction with music therapy or on their own — may also help you in caring for your loved one.


Larry Meigs, President & CEO of Visiting Angels

Visiting Angels is America’s choice in home care. Since 1998, Visiting Angels locations across the country have been helping elderly and disabled individuals by providing care and support in the comfort of home. In addition to senior home care and adult care, Visiting Angels provides dementia care and Alzheimer’s care for individuals suffering from memory disorders. There are now more than five hundred Visiting Angels locations nationwide.