The Caregiver’s Dilemma

The Caregiver’s Dilemma

I’ve been struggling with this for years it seems, when my husband stopped working back in 2005, stopped trying, stopped being motivated.

He couldn’t. He just couldn’t.

This was hard for me to understand. I’ve always been so ambitious, so driven.

The years passed. I kept trying to encourage him. Maybe you could do this. Maybe you could do that.

Then finally, it was, well, at least you could do the chores. I’ll work. You do the housework. That’s fair. And so it went.

Now, since he fell back in July 2015, that’s all changed.

I had never seen anyone fall and lose consciousness before. I was terrified. Then there were 12 hours of vomiting and being in and out of consciousness at the hospital. Then there were the months of not knowing.

What’s wrong with him? Does he have Alzheimer’s? Dementia? Is it progressive?

The answers first were “no.” And, then they were “yes.” No, he doesn’t have Alzheimer’s. Yes, he does have dementia.

After he regains his ability to speak and converse, he begins to tell me. About the concussions. All of the concussions. About the time when he was five and his brothers rolled him down a hill in an inner tube, and the inner tube stopped and he didn’t. About the time when he was eight and his best friend threw a hammer to him and the claw stuck in the back of his head. About the time he fell off a backhoe. Off the skateboard. And off the bike. And there were more. I made note of them somewhere.

More recently he admitted that when he was a kid, he and the other boys would headbutt each other. The game was to lose consciousness. And then there was the military where they also headbutted each other. While drunk.

He keeps saying he’s sorry. At first,that puzzled me. The apology would come out of the blue. He would cry as he said it.

What for? I would say.

It’s not your fault, I kept thinking. But now almost a year into the realization that my life has changed forever, and that things are going to get a whole lot worse…well, now after the headbutting stories, I wonder.

I’m no saint. I’m not a terrible person either, but I’m not a saint. I’m not a martyr. I don’t torture myself in order to feel just. I don’t seek out ways to deny myself so that I can feel righteous. That’s not my deal. If I could take a walk in the woods for the rest of my life, I would be ok. I don’t really need much else.

So when faced with caregiving, I’m not super jazzed about it. I’ve seen my mother and grandmother die. This was caregiver training, I guess. These were short-term assignments in caregiving. And there’s something different about taking care of your parents. So yes, they did change as they aged and died. They turned more inward. They were harder to reach. They were angrier and sadder. But for the most part, they were still recognizable as themselves. We still had that shared history. There were still ways to make it back to who we once were.

In my current situation, I’m dealing with the loss of my husband as he still lives. The optimistic, excited, loving, caring, giving, participating, idea sharing, adventurous man I married has receded into the shadows, and all to soon. I don’t know what my life will be like from one day to another. The yelling. The crying. The aggressiveness. The absence of conversation. The absence of participation. The doctor’s visits. The drugs. The bills. The fatigue. The despair.

The last neurologist said he has CTE. This is the disease of modern American football, popularized in the movie Concussion. This is a form of dementia caused by multiple blows to the head. It typically ends in suicide, but sometimes in murder and suicide.

I’ll admit it. I’ve been wanting to run.

And I know this is wrong. Even thinking it is wrong. And yet, the bad devil on my shoulder has captured the stage. My mind spins with ways to escape.

But this isn’t right. He would be there for me, and probably without as much inner turmoil. The fear I feel has crowded out the mourning. The instinct of self-preservation is strong in me.

One of my friends has advised me to carry my burdens with a light heart. But most of my friends have disappeared. The fastest way to clear a room is to ask someone if they’d like to be your alternate power of attorney.

Gulp. Silence.

I read an article about holding space for people. And I’m touched when I think of the few people who are holding space for me. They aren’t who I thought they would be. The people I thought I could depend on are long gone. The people I never thought would be there are showing up.

So what is love? Marriage? Friendship? What do you deny yourself and what do you keep?

I woke up this morning somewhat relieved. I didn’t have the answer, but I had the question.

The dilemma of caregiving is that if you stay, you’ll hate your life, but if you go, you’ll hate yourself.

 

Caregiver burnout – and not even started

Caregiver burnout – and not even started

A friend talked to me a few years ago about his mid life crisis. He was pushing himself too hard at work and everything eventually fell apart, except work, as he is still tremendously successful. But his marriage fell apart and he had never had children and there he was facing 40, already a world traveler, and he didn’t have it all.

I had lost the women who raised me to cancer and watched them pass. I had been bullied at work. I had hit the proverbial glass ceiling. My husband hadn’t worked in nearly a decade. My dog was old. I was five years older than my friend and yet, I wasn’t completely freaked out yet.

Maybe for him it was something he could do in a big way and get it over with. One really big burst of freak out and then it was over and he was back to being the tremendous success he was always meant to be.

But for me, I think it’s been a slow burn, which started when I realized that my mother was hoarding and then I realized she was an alcoholic and finally here I am realizing that my husband has inflicted numerous head traumas on himself and here we are at dementia.

And where’s my world travel?

There’s no decent thing to do but be present and participate. And how do I do this and stay sane?

Is my hold on sanity so tenuous? Maybe I’m just whining.

As I moved all of our things to our new apartment, as my back was aching and my arms were giving out, I repeated to myself: I am strong. My mantra. We had discussed personal mantras at work. That is mine: I am strong.

Mantras have to be short because you’re usually out of breath when you say them.

That’s all I could muster at the time.

It helped.

My coworker, who I seem to be at odds with going on 8 years, informed me of the usefulness of routines. (My internal voice was saying: boring. My inner artist rebels against routines.)

But I suppose you could think of routines like jazz. You learn them, but within them you can improvise. So I can schedule my daily walks, but they don’t have to be in the same place and what I do whilst walking is up to me. So maybe he has something with his routine advice.

Yesterday was difficult. I was thinking of who I would grant power of attorney. I put myself in the situation: I’ve been in an accident and can’t make financial decisions. Who pays the bills? Who keeps my life going so I can come back to it? Who will I allow into my personal financial life? Who do I trust to stay away until I need them?

I felt sick thinking of it.

In the last few days, my husband has wanted to belt me once and has screamed at me “full bellows” twice. I’m not one to scare easily, but I got up and walked away.

Is this my new life? Looking for triggers. Avoiding them?

The Alzheimer’s page gives advice, although I can’t imagine it was written by anyone with firsthand experience. I’m exhausted and we haven’t even gotten started. He is still him, just missing a few things. Planning and problem solving are gone, but he still laughs. He still understands. And he can still remember things and learn simple new tasks.

Maybe these things should give me hope. But hope will slay me in the end.

Routines. I’ll take the advice of the coworker I’m caged up with day after day. That and unpacking all these boxes. The count started at 91 and now it’s down to 37. I have either given these things away or have put them away. I should feel good about what I’ve already accomplished, and a small part of me does. But part of me wonders how I ever got into this situation. My friend, mentioned above, doesn’t have a box problem.

And there are 37 left. How many more weekends is that?  All the treasures of my family. And they are gone. Keeping their things makes me think they could come back, will come back, I guess. When I let go of their things, I seem to be letting go of them and it hurts.

And the books, although I’ve given away hundreds, there are still too many. Dovlatov’s Life is Short is on my desk now. Unfortunately, it’s in Russian. I haven’t seen an English translation. I stumbled through the first page yesterday, hating my awkward pronunciation the whole way and yet marveling at this language; it still strikes a chord in me. What is this mystical connection?

Жизнь коротка. Yes, it is.

In the end

In the end

It will come down to this

We were the best of friends

You were there for me

I was there for you

Little things like amnesia

won’t matter

The others weed themselves out like that

They weren’t there

They didn’t stick it out

But you, my friend

you followed me around

you did your part

you held me through the waves of my breaking heart

so that now when I face the deep chasm of the abyss

the end of dreams and hope

a life closing in

I am here for you

Even though I am afraid

of this dark thing

this rage against the dying of the light

I will always be your friend

And the path is clear

ignore the worst

remember the best

It’s easy to know what to do

I will sit with you

and remind myself

I know enough

to make you smile.

Natural Dementia Remedies (per the interweb)

Natural Dementia Remedies (per the interweb)

So here’s what I’ve got so far:

From what I’m watching and reading, there are several types of dementia, with Alzheimer’s being the type that most people think of first. For some types of dementia, there is a build up of a certain kind of protein in the brain that gums up the works with its tangles. Presumably this is a disease fighting response gone haywire, maybe as a result of too much inflammation in the brain caused by too much sugar or head trauma, or something else.

So it’s not enough to simply regrow brain cells, which recently scientists have proven can be done by boosting aerobic exercise, such as running, and by intermittent fasting, along with a diet high in healthy fats.

We must also address those protein tangles and the plaques associated with them. We’ve got to stop the production of those and clear them out. It seems that from a mechanical perspective, those two things would heal the dementia.

From various unchecked and perhaps dubious sources, I read that coffee, magnesium, and cinnamon fight the tau proteins.

Also from various unchecked sources, I read that the herb Ashwandgantha clears out the plaques.

Stress and sugar cause inflammation.

Ginger fights inflammation.

Running and caloric restriction promote neurogenesis (new brain cell growth).

Healthy fats feed the brain the optimal purest fuel with which to operate.

Music (helps with erratic thinking), resveratrol (anti-inflammatory), and meditation (de-stresses).

Vitamin D and plenty of sleep.

Plenty of water.

B vitamins.

Curcumin.

Learning new things.

Green tea.

Types of dementia: https://fightdementia.org.au/sites/default/files/20130808_QDC4.pdf

When you look into his eyes

When you look into his eyes

And he no longer sees you

But he needs you to make him breakfast

When you look into his eyes and he isn’t the only one

Who doesn’t remember how it used to be

When you look for his eyes and they are downcast

and filled with tears

and then hate

because you forgot to order his medicine

When you reach into your mouth with both hands

to hold your tongue

this is when you are tested

what did you know of your vows when you made them?

Did you have any idea that his body would still be there

but his mind would fly away?

For better or for worse

Did anyone define worse for you?

You thought he would cheat on you—that would be worse

You never imagined the loneliness of being next to someone who isn’t there

For richer or for poorer

Or that nursing care would gobble up your life’s work

and savings

in mere months

You thought dementia was about forgetting

Not anger

Not violence

Not shame

In good times and in bad

Or thought you’d give up your dreams as soon as you could realize them

For all the days of your life

And you remember that you chose him

above all others

because he was so kind.

 

 

Take me to Protvino

No, I didn’t say take me “in” Protvino!

I said: Take me “to” Protvino.

I want to see the tall trees again.

I want to visit the artists’ workshops

And the old church.

I want to see your smile

as it broadens to reveal that gap between your teeth.

Don’t call me “Anna K” and laugh!

We know that story ends

With theaters and trains.

But it amuses you

that I compare myself to Gatsby

And you to Daisy.

It’s all…

so American.

But I remain the Foreign Woman.

You grit your teeth.

But take me

to Protvino.

I insist.

I need to hear the crunch of snow beneath my feet

And the quiet caused by cold

At dusk

When everyone goes home.

Take me to Protvino and…

I will learn to cook…

for you.

Take me to Protvino and I will learn to speak…

for you.

I will compose songs in c minor…

All for you.

Take me to Protvino

and I will let you off your pedestal

to walk beneath the endless trees

with me

In the soft blue light

that lingers

after a heavy snow.

Take me in

Protvino

Because life is so damn short.