Capitulation

Photo by Anna Shvets on Pexels.com

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

(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

Photo by Matthias Zomer on Pexels.com

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

Photo by Kat Jayne on Pexels.com

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

This Is What You See

Photo by Tom Leishman on Pexels.com

 

 

By starlight, they fall asleep holding hands.

By moonlight, he frees one firefly caught between the glass door and the screen.

By lamplight, she reads while he holds her feet and asks, “What’s a four letter word for mixture?”

By candlelight, they heat water for washing on the gas stove.

By sunlight, they walk around the pond and stop to watch four goslings dozing.

By a red light, he says, “All clear on the right.”

By flashlight, she finds the missing puzzle piece under the couch.

By starlight, they fall asleep holding hands.