this is our life

He’s back

Burt’s decline has been very distressing. Yesterday, he slept all day. He didn’t respond to his aide and this scared her.

Today, he’s back and chatting. Giving advice, happy.

Ah, Lewy.

He’s staying in bed but eating well and talking a lot.

His decline. My denial

Oh, that famous river is always right over my shoulder.

Is it my heart that keeps me from accepting the inevitability of this disease?

Burt has been declining, as in sooo much more confused, delusions and hallucinating to beat_the_band.

He also is often sleeping more, although the fact that he’s up half the night contributes. He is also much weaker.

Are these phases or a downturn that won’t go back up? Who knows?

I know what I am wishing for.

The goal is to find acceptance. From the perspective of denial, I am working on it.

We are 4 years (±¼) past dx, but Burt just seemed to dive right into the hard stuff right off. A little Capgras with a dose of little people, etc, at the start. Drugs helped for about the next 3 years, but now he’s just not making any sense.

And now he’s sleeping more and weak, so half the time he doesn’t get off the bed. One day, he was up for the bathroom but returned to lie down. He ate well (we have to feed him to assure he eats) and fell asleep right after.

Over this past weekend, he slept much of Saturday but was up most of the night and still awoke at 7am. The carer got him to standing just long enough to change him and fix the bed on Sunday.

Despite the fact that he’s eating, he seems to be malnourished. When he sleeps through like he did today, he doesn’t get enough food. Obviously.

All this leads me back to that list of feelings. Sad Sorrow Teary.

Will this be useful?

My therapist gave me a list of feelings to try to refine my self-assessment.

I should look at & consult. What can sadness and sorrow mean or incorporate?

I feel bored, too, and guilty for that and other lapses in my care.
Worried falls under Fear for example. Guilt includes Regret Sorry Remorseful none of which feel like guilt aka this is my fault or I am at fault. Alphabetically guilt is followed by Hopeful.

Powerless lists Impotent Incapable Resigned Trapped Victim while Stressed / Tense leads to Anxious Burnedout Cranky Depleted Edgy Exhausted Frazzled Overwhelm Rattled Rejecting Restless Shaken Tight Weary & Worn out. Unsettled / Doubt doubles back to include Apprehensive again, as well as Concerned Dissatisfied Disturbed Grouchy [I pickup on grouchy] Hesitant Inhibited Perplexed ot Questioning & Rejecting.

Apprehensive and Hesitant can also track as Fear as does Frightened and Anxious.

This is the BIG THING from which I started my research: Despair / Sad Anguish Depressed Despondent (that’s too full a word, I think) Disappointed Discouraged Forlorn Gloomy Grief (stricken, I say) and of course Heartbroken Hopeless (and we are all familiar with how) Lonely (this journey is.) Longing Melancholy Sorrow [oh, yes] Teary Unhappy Upset Weary Yearning.

Bored, an old bug-a-boo of mine falls under the oddly titled Disconnected / Numb, along with Aloof Confused Distant Empty & (lord knows I am not) Indifferent (but yes to)
Isolated. You are free to explore if Lethargic Listless or Removed fits and, likewise Resistant Shut Down Uneasy Withdrawn.

Fear (let’s list and analyze all of it) Afraid & Anxious (kind of or some of the time) Apprehensive Frightened Hesitant Nervous Panic(ky, I tend to get that way) but not Paralyzed Scared or Terrified, (and then again a big yes to) Worried.

Panicky connects to Rattled, which is under Stressed / Tense.

Feelings are listed on this chart in the context of a logo that says “hoffman,” when you’re serious about change.”

It’s clear from any perspective how very complicated all this is. I mean, feelings, emotions, change. I mean grief, sadness, sorrow.

【It’s 6:30am so I allow myself to get up.】

Love, loss

Last night, Burt was very vocal. I believe he was mostly speaking in his sleep.

Much of this conversation last night addressed complaints. He called out my name a few times. In this chatter, he fluctuated between an unfavorable and a positive view of me. It was clear that he knew who I was.

This pleased me even though he asked «who’s this« and asked for confirmation of “which one” when I returned to the room. I knew he was speaking to me. He knew me. I hadn’t lost him. At least not for that night when he still recognized I was there with him.

Grateful, appreciative, and thankful

It’s Thanksgiving.

Talk of gratitude is as prevalent as the turkey on our plates. We are parsing what is worthy of our appreciation as we sit down for today’s feast.

The original idea of this holiday was to show thanks to God for the bounty in our lives. Gratitude practice is at the least a spiritual one.

It’s hard to be thankful if we don’t see a benevolent universe.

Sometimes, it’s hard to say thanks even when we see good around us.

We are often put into a grateful mode after a life‐threatening event. We look back, and we are thankful to be alive.

Gratitude comes to us after our lives are changed by other difficulties.

Burt’s diagnosis, and his ongoing illness, have given me the pause that sparks gratitude.

My gratitude at still having him here with me is tinged with sadness but also with memories of the happy life we shared.

I am grateful for the memories and for the good times we had.

Burt has often shown his deep appreciation over the course of his disease.

At times, he gives us grief and resistance before thanking us for something we did.

He can take pleasure at many little things and is quick to give a thanks for them.

His pleasure gives me joy. I am grateful for that.

Mayhem

Burt asked me if I knew that guy. I listened a little harder, had he said Maynard?

The guy, he repeated, «Mayhem«. His question gave me chills. I thought of the character Dean Winters plays in a TV ad, but I also thought of the mayhem LBD causes, the disruption in our lives and in his brain.

This day had been one on which he was particularly confused. Did Burt ever use that word before, I mean ever?

It’s never too late

The jingle about Jello Instant Pudding® is running through my head right now, but honestly this is a serious post about a serious question.

The other night, Burt, in the midst of his confusion, was lamenting how “sick” he feels.

My response was to tell him that whatever was bothering him, hurting him and upsetting him, we were in it together.

I repeated this little mantra many times.

I have often said that Burt’s LBD is a disease built for two. Any one with a spouse with dementia is in that very situation. We do go on with our lives while caregiving, but our lives are informed by our beloved’s dementia.

I felt like I had not said it often enough when he was a bit more cogent. We are in this together.

You should also know that the evening’s complaint included a “you did this to me” blame as in it’s you who are making me sick.

I would classify this accusation as part of his confusion; a little bit of the monument of distrust he’s built around our relationship.

Add to that the fact that he thinks his wife is never here no matter how much I insist I am. Right here. I am holding your hand, I will say, and he says go get her, bring her here.

The question: is it too late? Are my reassurances for him? Are they just for me? Did I miss the lifeboat, the moment we could fully share his distress?

Do I continue to reassure him? Me? Us?

We are in this together. We are!

Rapid

My sense is that Burt started his path in LBD at an advanced stage. From the get-go he went from a period of apathy to being fully confused in what felt like 60 seconds.

Capgras was one major symptom; little people enhabited our home; he needed reassurance that he was home.

Meds helped a lot for about three years after diagnosis. A lot. He chased away his hallucinations; generally recognized me; I didn’t have to walk him through the corridors back to our front door to prove we were at home.

As he’s moved further into Lewy, paranoia and distrust have crept into our relationship. He tells everyone he hates his wife, which leaves me wondering who I am. This is especially true when he thanks me for “being so nice” to him.

As I often say, many of these things confuse me more than they confuse him. That is not to imply that he is not confused.

Right now, I am taking this as a hard hit. My heart doesn’t want to accept the reality of this ugly degenerative disease.

I’m working towards acceptance. Damn!

Recognition

When we started our ride with Lewy, I was cheered± by one assurance. Unlike Alzheimer’s the person with this dementia will always know his/her spouse.

It’s a tricky point. They didn’t tell me that he would tell me that his wife was dead; or that he hates her. They didn’t say that there would be so many of me.

Well, actually, they did. I was introduced to Capgras (the “phantom” wife syndrome) early on. Burt never recognized me then, but he had many wives.

I guess what they didn’t tell me was how complicated all this was going to get.

Juggling multiple wives isn’t that hard for Burt. I am the one who is challenged by it.

Not just logistically. As time has passed on this roller coaster ride from hell, I have found the issue of my identity ever more difficult, emotionally. On the gut level.