this is our life

Dementia in the news

Sandra Day O’Connor died several weeks ago of complications from dementia.

Rosalynn Carter was 96 when she passed and had suffered from dementia as well.

These days dementia is often the diagnosis.

Sandra Day O’Connor had made “dementia” news before. When her husband was in memory care, he began an affair with a woman at the residence. Judge O’Connor approved it.

It’s a touching response to a difficult situation.

There was a similarly-themed film with Julie Christie. In it, Christie falls in love with a fellow resident as her husband and the man’s spouse watch during visits to the home.

I believe the movie is called Away From Her. I saw many years ago and found it very moving when I did.

Difficult Behaviors

My love exhibited unusual, difficult behaviors early in our journey. Firing caregivers was one of them. He could be aggressive and combative. I had reason to worry.

And wonder.

Things have changed pretty much, but I guess as long as he has a progressive, unpredictable disease, I will have reason to worry.

Sharing

Burt just asked one of our neighbors if he knew about his dementia.

Of course he did. Burt said, “It’s the worst.” Our kind neighbor said,”Yes.”

Recently, I wondered what Burt’s understanding of his disease actually means. I guess I am trying to fathom how deeply he comprehends that he has a brain disease.

His shares intimate that he knows it’s progressive. He has said things like “when the brain goes, that’s it.”How must he feel with this hanging over him?

It’s all in the timing

I’ve gotten into the habit of dismissing his actions as “poor timing.” He’ll ask for a glass of milk, for instance, and as I deliver it, he will take off for the bathroom or to go lie down.

Burt’s rhythm, unlike mine, requires a slower beat. I want to keep things moving. He needs time to process, even his own needs and wants.

While I can not predict what he’s going to do or decide, I can frame these moments as my missed timing.

I have begun to add a pause or break before springing to respond.

The advantage of waiting for the extra measure includes the opportunity to postpone an unwanted event.

For instance, he calls for a meal or snack at bedtime. Wait for it… he’s snoring.

This is not a universally effective trick. Last night, it was clear that the longer I took to get a snack, the later it would be before I could go back to sleep.

He had woken at 2am with a streak of hallucinations. He had actively moved himself from tale to top in the bed. I worried he would land on the floor and was in hysterics getting him to reposition.

It turned out that miraculously, he was able to turn. I shut the light, hoping he would doze off.

He continued to talk, politely asking one of the hallucinatory companions to get him a glass of milk.

I offered a Madeleine cookie in place of the Cheerios he requested and brought the milk.

What’s next?

The declines are small things, almost unnoticeable.

As you give care, however, those little indications don’t go unnoticed. At least not for long.

It is the unremarkable that catches your attention, or rather niggles at your consciousness.

It suddenly occurred to me that Burt’s acceptance that I hold the water glass for him was part of decline. He would object to my giving him water if he weren’t sick with this awful disease.

It’s a small thing, and it took me many days to notice.

It’s just one of the little ways in which Lewy steals him away. This may be why I so treasure his more combative behaviors.

There are lots of experiences and feelings I won’t share with you here. They are genuinely intense and hard to communicate to anyone who is not in the throes of caregiving. Those of you who are, have seen many of the toughest spots.

Burt’s difficult behaviors always throw me for a loop and threaten my hard-won equilibrium. (Ha!) They come and go.

It is a Lewy roller-coaster, after all, and sometimes it feels like Burt has redesigned it for maximum intensity.

There is one kind of intensity that is particularly rough for me. I am a “fixer” by nature. I want to make things right.

Burt’s moods vary, but when he’s low, I am desperate to make it better. I realized that I really want him happy, and when he’s down, I am distressed.

There is a touch of selfishness in that. A happy Burt is an easier Burt.

It is also heartbreaking to hear him bemoan his illness.

When he does, I have to acknowledge and commiserate rather than poo-poo his feelings.

None of that is easy. For either of us.

I frequently have to remind myself that he’s in this mess with me.

Like many of us

I have been tasked with caring for this one breaking and broken man.

I am not alone.

There are some 13 million caregivers in the USA, apparently, like me. Most of us stumbled into this daunting situation with no prior knowledge.

At times, it is an overwhelming job. I can be filled with self-doubt and dismay. I feel that I am not qualified for the rigors of this job. On other occasions, it is an opportunity to find my better self.

Each day brings fresh challenges. Some days bring unexpected delight; my love shows some uncanny insight or is particularly sweet; I respond to a difficult moment in a way to deflect it and get a happier outcome for both of us.

I am deciding, preparing, and guiding both our lives. I do the best I can. do I learn and hope to do better every day.

Per usual

It’s a premise I have advanced here before. Burt is a flurry of emotions; it’s a symptom of his disease. To say his moods are changeable is putting it mildly.

When I came home from my outings today, for instance, he told me how rotten I had been this morning. After a PT session, he told me how nice I was.

I’ll take it.

He also told me that he wanted me to have a party for my birthday. He can’t do the preparations, he said. I need to send out the invitations myself. “I don’t want to invite people you don’t like.”

He told me he really enjoyed his party. That, too, made my day.

He had gone from trying to figure out how to get up and out of his bed (and nearly not making it) to being able to call up his OT. He had a long, elaborate conversation with her in which he thanked her for referring his PT to him.

He also said he had good news that he and Tamara were no longer fighting. Burt told me that she was happy to hear this; it had bothered her when we didn’t get along.

More good news for that moment.

Getting to know you

I have focused on finding the Burt I know within the damaged man he’s become. Today, I realized that I needed to also look at who he is. It’s time to get to know my Burt as he is now.

Getting to know him entails accepting the change. I know, I know he has dementia and with that cognitive decline, lack of commonsense, a different perspective on the logical. It should be clear he is a changed man.

It’s tempting to ignore his more nonsensical exclamations. In fact, I try to ignore those. Unfortunately, they are part of who he has become. I realized that I didn’t know who he is becoming and maybe should stop avoiding “meeting” him where he is.

Sometimes, there’s that glimmer of who he was. It comes as a flash of anger or a moment of love.

I have spoken of how very emotional. he is. He has always been sentimental. His LBD has given greater scope to all his reactions.

This morning, I realized I needed to listen more intensely. There is a man I don’t fully know expressing himself.

Getting to know him in all these facets is what I owe to our relationship.

Aspirational

Let me confess that I am aspiring to a better path on this journey. I am far from treading that road.

I boss him. He hates that. When he “throws me out,” instead of saying “never,” I say “OK see you around.” I need to say “I will never ever leave you.” Not only is it true, but it’s the reassurance he needs. And deserves.

Many of my blogs are hopeful, and the old business standby, “best practices.”

Can I do better? Working on it!