this is our life

Advice from self

“Stick to your knitting” might be apt in these moments where my anxiety over my husband’s condition runs headlong into my feelings of patriotism and citizenship.

I think I can do both. Worrying is a well-honed skill.

I am more than capable to juggle the two.

Neither is a small concern.

There. I have interjected my politics and civic disposition into the blog about our journey with Lewy Body Dementia.

Both matter a great deal to me. I resent that this particular political moment is making my journey in life that much harder.

My life at home is changing further; Burt needs more help, especially getting up and staying up; he walks less, and getting into bed is scary for him.

I guess that I should have said our life is changing. I will need more aides, more hours. We are getting the hospital bed to make Burt more comfortable getting in and out.

He’s likely to use the wheelchair more often than his walker going forward. I am saddened.

I would like to concentrate my efforts and talents to just giving Burt the best of me.

Of course I shall. Whatever the distractions. However, I stumble or mumble along.

A birthday surprise

“I am never going here with you again,” Burt whispers. Maybe he even said “anywhere with you,” but you get the gist.

It was a wonderful party. Our friends brought him thoughtful gifts. At my suggestion, we sang him the birthday song. (Do we still owe someone royalties on that?)

The first arrivals talked among themselves about their Brooklyn roots. I interjected Burt, who has genuine Brooklyn roots himself, but he was a reluctant talker. Funnily enough, he had asked the weekend aide if he knew 805 Avenue O (his old Bklyn address) just minutes before the doorbell chimed.

We women of the party [and some men] were all happy to see each other. There was love and energy in the room.

Burt tasted but did not stick with any of the food offered him. He sat back and observed.

My youngest friend was tasked with flirting a smile out of him. She did.

The arrival of his weekend carer coaxed another smile from him.

Everyone respectfully made their excuses to move on in the time slot we had designated.

Two hours for Burt was likely about 75 minutes longer than he could process.

Then we had our stragglers, a late arriving sweetheart of a neighbor and a lovely couple from the next block.

Each came and went quickly, not before making a tribute to the man of the hour.

The two aides helped by assisting in getting Burt into the bedroom. Oh, there were protests at the process, but I could not have budged him without them.

It was fun. I was so glad to have this (likely last but significant party) for my birthday boy.

I also really welcomed the friendship everyone brought with them to Burt’s 85th!

A question of time

Recently, a kindred caregiving spouse wondered how many hours of care she should consider for her husband. She had been going it alone, and with all her heart and love. Anyone who’s been there knows how intensely draining and lonely this can be.

There comes a time on this journey when caregivers need relief. For me, it was pretty much from the get-go; I knew I wouldn’t survive if I didn’t get time to myself. I have termed my need to get away (to the gym, the store, a museum, to lunch with friends) as existential.

Today, with Burt needing both more and [understanding] less, it is increasingly necessary.

This was my response to her question about how much time to give over to a professional aide.

When I began to hire caregivers for Burt, he needed companion care.

I couldn’t leave him alone, but he was able: to dress himself, use the toilet, walk independently, etc. I had 16 to 20 hours at first [in 4 hour increments].

He now needs help with ADLs, wears a brief, and depends on a walker. At times, his walking is unsteady. I use 42 hours [6hrs/ 7 days].

I could use more, though I have some privacy issues in a one bedroom NYC apartment and have to work out how a longer schedule would work for us.

I use approximately 30 of these hours for my-time. I come home and work with the aide for the last hour of her weekday shift.

On Sat & Sun, the point of the helping hand is so Burt and I can get out together. His weekend aide helps get him dressed and cleaned and bathromed.

Then he “drives” Burt out in the wheelchair with me so we can go to a park and out for ice cream.

Today, I am grateful that it is Burt’s 85th birthday.

Happy birthday, Burt.

I am so relieved

Now I really am relieved. The fever Burt was running appears to have hit normal.

The thermometer stopped its red scream and went to a peaceful green this morning. His head was cool to the touch.

We haven’t heard what the picture that XRay Tommy took in our home looks like yet. But Tylenol seems to be doing its job.

The always responsive medical team at Weill Cornell’s Center on Aging called this morning about my update. I am so grateful for this great group of doctors and nurses.

Fingers crossed that he continues to mend from whatever this episode is!

Relieved?

It was a relief of sorts to realize that Burt’s decline of yesterday was due to a raging fever. The fever, after a night with Tylenol, is in a more manageable range.

I am ashamed of myself for being so angry and impatient over Burt’s inability to get out of bed. How unkind of me to act as if this was about me.

I am distressed over his fever and portalled his always reliable doctor. Today, it’s about getting him treatment.

He is making better sense today.

We’ve started to connect a little in the sweet way he usually has.

Heartbreak

Lewy Body Dementia offers just reams of tales of heartbreak. They appear as unexpectedly as if we all didn’t know where our story was heading.

Every decline has been a surprise to me as if there was a plot twist I hadn’t seen coming.

I can’t justify this reaction. I know what this journey of ours is.

Today, I am inconsolably sad. Burt refuses to get up to go out with me. It’s our day together, and he won’t budge.

My pride is making me childish. He just can’t, and I worry that if he won’t today as he did not on Friday, he will no longer be able to walk tomorrow.

Soon, he will be bed bound. I am not ready for that.

He speaks of death and dying. He no longer recognizes my love for him.

I am definitely not ready for that. For none of that.

It’s Lewy, so…maybe things could change again. Or it could be a hangover from his vaccination that will pass. It’s Lewy, so we might be experiencing turbulence and …who knows.

Fears

Paranoia is a frequent visitor as we age.

I think it’s because the old know they [ok we] are vulnerable.

For those with dementia there’s a greater feeling of susceptibility.

Your p.w.d. may seem unaware of having a malady, but s/he senses that there is something off.

Paranoia seems like a way to protect ourselves when feeling susceptible.

It may be a misguided approach to imagined threats, but it is a tradition as we get older.

Burt’s paranoia appears to center around food, although he has declared that an aide is killing him.

On some occasions, he is being slain by one of his hallucinations. As in, that guy (not) yesterday was murdering him.

The paranoia is a delusion, so why not have it exercised by a hallucinatory agent.

Thankfully, the fear is generally perfunctory and passes. It has not stopped him from eating.

Even after he says that it’s poison I am giving him, he usually opens wide for the next bite.

Surprise

Have you noticed what a handy tool the calendar is? We share so much by pointing to it.

Look, over here, come Thursday, it’s your birthday.

Burt is no longer able to keep order in the days, the months, or the dates. Recently, on a phone confirmation, he wasn’t able to assure the caller of his date of birth.

He’s going to be truly surprised. My hope, my desire, my want is that he’ll be happily surprised by a small crowd of friends here to celebrate him.

I hope he will like the attention [he usually does] and that he recognizes some of our friends [unlikely]. He will know it’s all about him. 🤞

This little project violates my “in moderation” dictum, except that it is scheduled for just 2 hours. I recognize that that might be 1½ too long for Burt.

If it goes well, I will reinstate my invitations to a couple of people to drop by from time to time. I get out with people all the time while Burt is with his aide. He sees only us and his PT or OT.

This useful mental health tidbit was reinforced for us by the pandemic: Isolation isn’t good for any of us.

For better. Or worse.

BTW, I found the errant marriage certificate in an envelope in this bag today.

A helpful neighbor who stopped by to move Burt into a better position in the bed said, “You might not notice, but I see a huge decline in the last 3 months.” I did. Notice that is.

The route’s been downhill, then a little rise and plateau. The fount of nonsensical stories is hard not to notice.

Burt’s conversations with a slew of imaginary friends are less and less coherent. I guess just the fact that he has these chats is a signal; heck, I know the signposts.

I get reports of trips he’s taken from him. He’s enjoying tv shows with the set off.

He’s mostly cheerful even in his arguments with the pals only he sees.

Hallucinations are near the top on the checklist of signs of LBD. Delusions, too.

He’s been weaker walking and in bed more. He’s sleeping for long [or longer] periods, too.

I’m watching. Hoping there will be a famous Lewy swing.

I think his birthday surprise will bring him a little joy. Connecting to others may be just the ticket.