this is our life

Funny you should ask

How do you practice self-care?

The “self-care” question meets with controversy and raised eyebrows in my community of caregivers.

“Take care of yourself” is a well-meant message we often hear. Many of those of us who are taking care of a spouse understand the need, appreciate the sentiment, and just wish you didn’t have to state the obvious.

The statistics of our survival are actually pretty grim. We’ve taken on a lot with plenty more where that came from as the disease progresses.

So, how do I handle my self-care?

I got a companion aide for Burt pretty much from the beginning;
Purpose of that: I got time to myself.
Time to myself included a few hours on a ferry (water is very soothing); a trip to a museum.
Also, lunch with friends.
I went to the gym as well during my me-time.
Less enjoyably but high on the take-care-of-yourself scale, I had doctor and dentist appointments.
I found a therapist and made appointments with social workers from the neuro team.
Support groups! Oh my, I attend four or more each month to vent or look for guidance or support. One is an online message board group of exclusively spouses of the Lewy-afflicted.
I blog, not only about our situation but also on a variety of subjects that interest me and reflect who I am.

It’s a long list, and sometimes it, too, feels like an effort. An essential effort.

Virtual walk

I have wanted to join one of these Caring Kind walks for years. Perhaps with our weekend aide, we’re going to be able to do it this year!

For now, I’m registered to walk in my heart and spirit along with others on this journey with dementia.

Of course, Burt and I will walk together no matter what happens on that day. (For the record, October 19th at 10am in Central Park.)

The link is for a fundraising page for sponsorship of my passive walking.

https://give.caringkindnyc.org/fundraiser/56

Sadness, no Sorrow

We need to grieve our sorrow. So do our sweethearts who are afflicted.

I specifically said “sorrow” rather than sadness.

It’s a deeper and more encompassing emotion.

It seems that as his disease progresses, Burt grieves less.

He appears to be less aware of his situation; if that is so, I am glad for him. Awareness that he has dementia did not improve his quality of life.

I hope that while he had awareness, he had the chance to own his sorrow. My grief is on-going, increased as his capacity is diminished.

If I am vague about his understanding, it’s because I don’t know; he often seemed to brood but did not always articulate.

Often, I am sure he could not. I have quoted him in other posts saying, “It’s a brain disease.”

To me, that was heart- wrenching enough. A kind of half-spoken sorrow, the whisper of his awareness.

Chug chug

The Lewy roller-coaster has taken a small uphill turn.

Burt’s no more cogent than he was at the slip down the slope. The change is more to do with his engagement with others. He’s happy to greet those he passes and more interested in being around others.

We’re still surrounded by extra wives (now again, mostly named Tamara) and visits from mom and pop. He’s back to remembering his ex-wife’s name. At least he did last night.

He’s needy and demanding; volatile and quick to fly off the handle; unable to judge safe from harm.

His thought processes are convoluted, of course. He still has dementia, of course. There’s no escaping that.

The Lewy cart just chugged up the hill a little. I’m grateful to see him a little happier.

A bad boy

Perhaps my tolerance for Burt’s more difficult side stems from my affection for the bad boy.

Some of his outbursts are angry and defensive, but others have a touch of the mischievous.

My boy has a wild streak. Still.

TMI

The balance between giving your beloved directions and oversharing expectations is just another fulcrum of care.

You never told me is a frequent complaint whether I did or not.

I will plead guilty and mutter a oh I thought I mentioned and that old standby sorry.

Tell him about an upcoming event or activity too early, and he’s raring to go. Wait closer to the time and his timing will drag it out until it’s too late.

The latter could happen anyway, even if he was forewarned.

Getting out together

I hate to admit it. When apparently healthy couples of a certain age stroll by hand in hand, I am envious.

The recent outings facilitated by our new weekend aide take some of the sting of my jealousy away. I can get out with my guy. That’s a nice feeling.

We both enjoy being out, and Burt’s memory has been jogged by some of the [once familiar] sights.

That’s gratifying.

Fresh air offers a mood boost, too.

We can both use that!

Identity isn’t just for politics

This morning, I realized that the name of my poetry blog has a correlation with our journey with dementia.

Burt has a regular delusion [mostly in early morning or at evening into night](pardon the digression). I am one of several wives, his Capgras syndrome tells me. Often, I am not sure which one he is addressing.

I have taken to calling myself Number 1 as in Tamara #1. We were all named Tamara, but now this pattern has diverged. I don’t know where he gets Dorothy from, but there she is, too.

I named my poetry site Tamara, really. Lewy Body had nothing to do with that choice then. Now, I cling to it as a way of preserving the identity Burt’s Lewy is stripping from me.

And that

We have our moments. I notice that difficult ones are always expressed in words. The happier ones come in pictures.

Argumentative

Early on, I lamented not being able to argue with my husband.

Now, when I scream at him out of exasperation from another room, he thinks there are two crazy women in his life.

That’s not fair to him and must be a tad terrifying.

His demonstrations of anger seem to be a way of asserting his control. When he’s out of control, he feels the power of his temper.

Those tantrums are now more comical than terrible except for concerns over his safety as he jams his walker into a wall. He no longer has the ability to organize his fury, but he certainly gives it maximum effort.

My yelling at him is my venting after repeated attempts to quiet him fail me or rather when more attempts than my patience will sustain are needed.

It’s ultimately ineffective and truly dangerous to the frailty of our relationship. He doesn’t know which wife is soothing him or which one is shouting. My being consistently nice goes further towards keeping him from distress than any quirk of my temper.

I know all this, and yet my better self doesn’t always rise to the trial. Keep trying. It’s all I can do.