Caregivers, Care-receivers, and Clothes

April 11, 2021March 25, 2021Leave a comment

When you’re dealing with a person who forgets stuff, the challenges spawn adaptations. The problem with caring people with dementia is that, unlike a toddler, they don’t maintain the learning. What you show them one day is usually gone the next. So here are some fixes that myself and other caregivers have come up with regarding clothes.

> I complained to the caregivers in my support group that I couldn’t get my husband, P., to change out of his long underwear and into his pajamas so that the long underwear could go into the hamper. One of them suggested I buy more sets of long underwear, which I did. I’ve even labeled them so I can match up the gray tops and bottoms easily. Next time I’m buying different colored sets.

> P. likes to sleep in his long underwear. Left to his own devices in the morning, my husband will shower and then put on the same long underwear and the clothes that he wore the day before (see above). We’re working on getting him to go directly to the bathroom and put his long john “pajamas” and underwear and socks directly into the hamper. So far, it works–sometimes. He often asks, “But what will I wear today?”

> Routines are really important for folks with memory loss. P.’s now getting pretty good at remembering to change from muddy, outdoor boots into clean house sneakers.

> P. has little discrimination regarding outdoor temperatures. He tends to be cold a lot of the time. But he needs help choosing a jacket. I try to limit the choices on the coat rack to two at most.

> He sometimes mixes up his layers, putting the down vest under his flannel shirt. I just make light of it and help him switch them around.

> A couple of years ago, I bought him a fancy velour jogging suit. The pants were easy pull-on, and the jacket was warm. It was a pretty spiffy outfit. I thought it would make dressing easier. He hates it. The only times he’s worn the jogging suit is when he’s had an endoscopy.

> P. helps me fold and put away the laundry. But he doesn’t always remember where things go. I haven’t yet resorted to labeling his dresser drawers, but that means that I have to reorganize when he puts his clothes away.

> Another caregiver said that she packs away all the off-season clothing. I took her idea and put all the summer clothes away, leaving a limited amount of items in the closet.

When I reread this, I feel a little apologetic for focusing on such apparent minutia, but then–these are the thoughts and activities that make up a large portion of my days.

Caregiving is not easy. One day may not be too difficult, but the cumulative effect is harder to cope with. P. always wants to help with chores, but sometimes it’s easier to do them myself than direct him through the task. Yes, I probably should be more patient. Yes, I should slow down and allow him the dignity of assisting with our daily chores. Each day I make choices anew, and that’s how I go forward, day by day.

Fever

April 8, 2021March 16, 2021Leave a comment

The way it might be

held me two nights

in a dream of fever.

In the dark hours

on damp sheets,

I arranged the move,

the storage, the travel.

I bought the condo,

furnished it with bright colors.

The way it might be

wrapped me tight

in hot excitement.

Restless,

I claimed the precedence

of my needs

as if I were the solitary crone,

free to sail the world

standing at the bow

in a muslin jacket

and wide, wind-whipped pants.

The way it might have been

seized the plans

and plunged into the sea.

Drowned the dream with the real:

your needs, your care, your claims.

My ropes floated to the surface,

found me in all the vast ocean.

Cinched tight again.

I lost the way it might have been.

Dementia Crept In

April 4, 2021March 16, 20213 Comments

For this memoir, I’ll take the third person. It’s informative for me to view the events from an observer’s distance. I’ll be Joy, and my husband will be Phil.

Back in the early 2000s, Joy and Phil were busy professionals. Joy worked full-time teaching English as a New Language (ENL). She wrote columns for the union newsletter and other publications. Phil had two offices for his hypnosis clients, one at home and one in Monroe. When he wasn’t helping people quit smoking or lose weight or eliminate phobias, he was spreading his brochures around Orange and Ulster Counties. He often had appointments at night, which suited Joy just fine, as she liked to have the house to herself after work.

If Joy had been less busy and more alert, she might have wondered about the books Phil kept buying: Improve Your Memory books. Train Your Brain books. And the supplements on the counter: Brain boosters. Joy knew that Phil’s mother had died of Alzheimer’s disease, in a slow decline until reaching the age of ninety. Phil never expressed any fears about his own health, but the books spoke for him. Joy wasn’t attending.

Joy retired in 2011. Phil took time off for them to travel and visit family in Italy. When they got back, Phil started having trouble with his schedule. He missed a few appointments. Joy found out that Phil had been seeing a neurologist who called Phil’s issue, “memory loss.” A year and a few tests later it was an official diagnosis: mild vascular dementia.

The neurologist ordered a driving test. Phil was incensed. “There’s nothing wrong with my driving!” But there was. He made left turns in front of oncoming cars. He drove too fast and too close. Phil failed the driving test. “It’s that woman’s fault,” he complained, blaming the examiner.

Joy took over the driving. Fortunately, in spite of his indignation, Phil didn’t try to take the car keys and leave. He didn’t argue about who was to drive. So perhaps Phil felt insecure about his own abilities.

When they visited family in Spain for some weeks, Joy did all the packing. Phil could no longer organize himself to complete tasks like choosing what clothes to take or ordering additional medications from the pharmacy. They argued about Phil carrying his own passport and plane tickets. Joy was afraid he’d misplace them, as he often misplaced his wallet and phone. They settled it with a pouch around Phil’s neck. It was up to Joy to make sure he put it on every morning.

Phil stopped working after that trip to Spain. He could no longer do the jobs needed to maintain the four-bedroom house, and Joy was tired of the additional responsibility. They moved to a two-bedroom apartment. Phil was unhappy that his tool collection was downsized and sent to a storage unit. There was no need for a lawn mower or a weed-whacker. He stopped initiating new activities or new conversation and spent most of his time rereading magazines or doing crossword puzzles.

Each month and week, Joy noted more losses. He couldn’t remember where the utensils and dishes were in the kitchen, so she labeled the drawers and cabinets. He didn’t know which clothes were appropriate for the weather. Joy chose his outfit each morning. Phil couldn’t remember which pills he’d taken or whether he’d taken any at all. Joy took over medications and supplements, putting them out in a cup at breakfast.

Phil asked sad questions, like “What’s your daughter’s name?” and “Was I married to her?” (Maddie, his first wife). If requested to get something from another room, Phil would forget what it was he had to bring.

Joy was in despair. For her, each day was Groundhog Day. Everything was on repeat: the directions needed for daily routines, the comments he made about the food, the weather, the houseplants. “Thank you for making breakfast,” said three times.

Joy boomeranged from frustration to anger to guilt to sorrow in an endless loop. If she yelled at him, she felt awful. He was, in spite of everything, a sweet-tempered, loving man. Phil lived in the present, and while each experience was fresh for him, Joy felt buried in dullness.

And then came the Corona Virus. And it all got worse. Cut off from social interaction, Phil lost more of his cognition. Joy entertained herself with jigsaw puzzles and sewing projects and Zoom meetings. But times were hard.

And that’s where we leave Joy and Phil–for now.

Capitulation

April 1, 2021March 11, 2021Leave a comment

I move my razor from the shower caddy

to the shelf

because he keeps using it

even though I’ve labeled the handle.

I write matching numbers on each pair of long johns

because he can’t seem to dress himself anymore.

I hide the bottles of medication and vitamins

because he can’t remember what he’s taken.

I remind him daily not to wear his slippers outside,

to take off his knee brace at night,

to put the medical alert button in the recharger.

I give up.

I give in to being the Memory,

the Accountant, the Cook,

the Chauffeur, the Valet,

the Event Manager

for someone not the someone

so lively and quick

that I knew

once,

then.

Dementia: Laugh or Cry

March 28, 2021March 8, 2021Leave a comment

(reposted from November, 2020 on tangledmagic.blog)

Sometimes caregiving for a person with dementia becomes so difficult and absurd that the only possible response is–laugh.

Yesterday, I was cleaning out files. The box of paper to be recycled was overflowing. My husband wandered upstairs to check in.

“Can I do anything to help you?” he asked, as he often does. (I am blessed with a sweet-tempered, cooperative demented person, not like some caregivers who deal with belligerence.)

“Well, yes,” I answered. “I need a large garbage bag for these papers.”

“Where are the bags?” he asked. (Are you paying attention? Most spouses would know where to find the garbage bags.)

I told him, “In the cabinet to the left of the sink. They’re in a box under the medium sized bags.” I illustrated the size spreading my arms. “About this big.”

He turned to go on his errand. Stopped. “What am I getting?”

“A large garbage bag.”

“Where are they?”

I told him again. (By this time, I’m already thinking I should go get the bag myself. But he wants so badly to be helpful.)

He made little grunts as he went downstairs–his arthritic knees complaining.

He was gone a while. I moved on to thinning out the notes pinned to my bulletin board.

He came back holding—

three packages of snacks!!

Chip Ahoys. Cheddar rice cakes. Fig Newtons.

“Is this what you wanted?” he asked.

I looked at the snacks. I looked at his face. This dear man, who tries so hard, who vehemently denies his condition. (“I don’t believe it,” he says.)

What could I do? I laughed and hugged him hard and long.

Then I took the snacks and went downstairs to get the garbage bag.

Caregiving is challenging. That’s why I value my caregiver group. We Zoom twice a month. These are the women who understand. Who often can offer resources to assist with a problem.

This image has an empty alt attribute; its file name is pexels-photo-4588210.jpeg — Photo by Magda Ehlers on Pexels.com

Here are two excellent resources for caregivers, local and national:

Ulster County Office for the Aging 845-340-3456

1003 Development Court, Kingston, NY 12401

Alzheimer’s Association

800-272-3900

www.alz.org

Yes

March 21, 2021March 16, 2021Leave a comment

Show me where I signed the document.

Where have you gone?

Show me the day I agreed to this life.

It’s time to take a shower. It’s time to eat.

Sometime before I was pulled into birth,

I must have approved this plan.

It’s hot outside. You don’t need a jacket.

I must be learning something huge.

The dumpsters are to the right. The mailboxes are to the left.

This anxious, grown up toddler gained admittance.

Yes, you can come with me. Yes, I will go with you.

Yes, yes.

I must have said yes.

When I start feeling sorry for myself, I like to listen to Iyanla Van Zant. Maybe you’ll find her inspiring, too.

Freedom, Travel, and Dementia

March 14, 2021March 7, 2021Leave a comment

Since 2015, I’ve been caring for my husband with vascular dementia. Yesterday morning, a wave of despair hit me, as happens sometimes. This particular drenching’s theme was my lack of freedom of movement. I haven’t been anywhere by myself since December 2019, when my husband’s son took him camping for a few days. That’s a year and a half, right?

So I began wandering mentally, testing the possibilities. What if, after we’re both vaccinated, I could find a reliable companion to give me a few hours’ respite each week? What if the social worker at the gerontologist’s office could link me up with a certified aide who would stay in our house for a week or so while I went away? By myself.

You see, traveling with my husband is no small undertaking. The flights and car rental are peanuts compared to the packing, the organizing of medication, and the actual keeping track of him in unfamiliar, crowded locations like airports. He is slow to grasp directions and to respond quickly when something needs to happen.

Plus, in public places, he tends to disappear without telling me. Usually, he’s heading for the public toilet, but he may decide to buy a candy bar or some hot tea. I turn around and he’s gone. Panic.

He wants to be in charge of his passport, debit card, cash. OK. But he can’t operate the gas pump anymore. How much autonomy is safe?

Do I even remember what it felt like to be alone in the house? To make choices without the parameters of his needs? To relax in my own company without the time constraints of medications and mealtimes?

My freedom is more restricted by having a reconstructed family. My kids aren’t his kids, so they can’t be expected to feel the same responsibility toward him that they might have toward me or their father. If we weren’t reblended by divorces, I might feel justified in saying, “It’s your turn to take care of your father. I need a break.” But I don’t.

This is just one of my early morning rants. If you’re a caregiver, you’ll get it. That’s why I look forward to my twice-a-month caregivers’ Zoom group. They get it. They have solutions I haven’t thought of.

And—several caregivers in the group are worse off than I am, taking care of someone who is belligerent or incontinent or suicidal. It puts my self-pity in perspective and helps me back to grace and gratitude.

A good resource is www.alz.org