this is our life

To care and protect

My mission since Burt’s diagnosis [the big scary dx] more than 4 years ago has been to protect him.

Of course. That’s it. I have pinpointed my malaise.

I can’t fix this as one of the prompts in my grief writing support group put it. That phrase sums up my frustration in the most succinct way.

Now, it’s that I cannot protect him from getting bed sores.

Pressure wounds are a danger when he’s bedbound. I can try, and I can diligently observe and treat.

I need to be able to turn him. I cannot. I need assistance, and even then, it is I who is assisting.

He’s helpless, and I feel helpless to help.

There is the formula for my current sorrows. For now, I have pinpointed my malaise.

I will wonder what needs fixing that I cannot fix. How can I meet my mission to care and protect if I am helpless to fix this?

There will be other sadness. Different sorrow. I can’t fix it but

The honeymoon is over

It’s not for me. I am saddened and relieved that I am no longer the most important person in Burt’s life.

No, there isn’t anyone else, although during Lewy’s tenure, he’s had infatuations. Early in the journey, he asked our lawyer about divorce so he could date one of his caregivers. Why not? She was consistently kind, and I nagged.

He tells everyone that I am never here. To my relief, he stopped saying that he hates his wife, but I think he was thinking of me as a voice on the phone.

He no longer calls me randomly during the day [we’ve established that]. I’ve got my mixed feelings about not hearing from him.

The other day, he showed none of the usual enthusiasm about my homecoming.

Last week, when I said I love you, he stared at the ceiling. He used to say, “I love it when you say that.”

Every day is different. Tonight, he’s talking to me, by name. The conversation is mixed in with some delusions and a fantom friendship, but I seem to matter at this moment.

Collateral damage

Burt is in the line of fire as Lewy takes more and more of his self. I feel for his losses as I do for my own. He spoke of himself in the third person today. “Does Burt know?,” he asked.

I don’t understand so much of what he utters these days, but I heard that astonishing bit clearly.

While he suffers in silent confusion or more often in chatty confusion, I also worry at my being collateral damage. It is a disease built for two, an ill-fitted rickety bicycle of symptoms and losses.

I am losing, too. Not just my lover, my partner, my helpmate, my companion… need I go on listing the who of it all?

I am also losing my quality of life. I no longer do many things that gave me (us) pleasure. I do not go to the theater to enjoy ballet or music or drama. I miss that, but am not eager to revisit that part of our past life. I am simply wistful.

It is the company of friends I seek now. Conversation, even if it is chit-chat, has acquired a mythic value. I feel the existential need to connect to that part of my life. This is the me-time I mean to pursue.

Slipping away

I hear myself saying, “I love you, truly, madly, deeply.” Why am I always quoting, inserting film titles or song lyrics?, I ask myself with mild annoyance at the habit of anchoring my affections in cultural history.

I think it’s to acknowledge how normal it is. To love and to care, to adore the man I love [there I go again] is something others have done. It’s routine. It’s not unusual.

It seems I need to validate that for sentimental reasons.

The distance from cognitive impairment to making no sense has become a matter of days. Oh, I know it’s been a trajectory of up and down over many years. I have carefully documented the ride we’re on in my diary of days and publicly here.

We are at the point of no return, I think; the place where he can settle only deeper into confusion.

I have said this before but I know that my expressions of love and devotion are to reassure him and remind me. I am anchoring and holding fast in a storm of emotions.

I need to recall what love is as I feel the sadness, the sorrow. The loss.

Time passes

A gratitude

Time is an ironic boss. It passes.

It moves so slowly that it’s as if someone forgot to release the break.

At the same time (or by the same token), it rushes past us in a blur.

In those instances (in those moments), we are caught off guard by the whirlwind. We sometimes forget exactly what happened.

We’ve lost focus of the good times and can’t hold on to them.

We may have a vague sense of their importance, just as we have a sense of how trivial some of the bad times are.

Good times are in the timing.

We can frame them (as keepsakes and in remembrance).

We can find them even when the slow passages wear us down.

I will not wax specific here.

I will let you find your own best-of-the-day.

Me me me Time

A Lament

Let’s face it, I have me-time even when I sit with Burt. (How do you think these blogs get written?) Most of the time, there are no pressing and time-consuming needs.

There’s a little quiet conversation. It’s not challenging or sustained.

Often, it doesn’t even include me as Burt’s focused on some fantom friend. His aide and I love when he gets goofy and laughs at his own jokes.

There’s the feeding which feels good because giving food is a nurturing act.

There’s sitting and listening and scrolling.

There are no more excursions into the park. Just weekends at home sitting.

So I have time. I have me-time. What I miss now is the we-time.

It’s an aggressive disease

Long ago, that’s what 4 years feels like, Burt needed only companion care.

Or, I needed it for him so I could feel he was safe and not alone while I took time for myself. I always knew the time for myself was a necessity if I would make it through the slog.

Along the way, we went through a large number of caregivers. Burt was picky, and I respected that he needed to spend his time with someone he liked.

Some agencies sent an aide without interviewing the family. Some sent a nurse along on the first day to assess the care plan.

Others had a vetting procedure. On one such visit, Burt really liked the nurse and social worker who came to see us.

He was enjoying the attention and asserting himself. His banter was verbally aggressive. Burt made it clear that he would be the boss. Burt’s aggression was mostly performative.

The agency turned us down.

They said they couldn’t subject their caregivers to any hostile behaviors.

I told the agency’s coordinator I felt like my child was denied a place in kindergarten.

I also, more seriously, wondered why professional home health aides weren’t able to handle a common issue in dementia care.

Aggressive behavior is often seen in dementia patients, more often in those with Lewy Body.

Burt’s PT left when Burt hit him on the arm. Under similar circumstances, a substitute aide told me Burt couldn’t do that when he tapped her.

At the next PT session, Burt was back to his cooperative self. In the instance with the aide, I held his hand while she turned him.

Burt fights being turned. Not hard, but with resistance. He sometimes curses his “attacker,” or lashes out, but is conciliatory when we identify ourselves. “We’re just trying to help you, Burt.”

Words of comfort or reassurance usually defuse his confusion and anger.

That early rejection from the agency had me worried that there would be no respite on this journey.

I am grateful that that is not the case.

Changes

Burt seems less restless, even calm, despite the endless chatter. He’ll say he’s scared, but it isn’t urgent.

In other words, the prediction that this declining state would be “easier” has come to fruition.

His aides can give him water or juice. He’s amenable to eating if they feed him.

Burt now entertains himself in conversations that require no response.

Since he’s in his bed, I don’t have to worry that he’ll fall; I don’t need to hover while he shuffles about.

There are issues with being bedbound. The pressure sores require daily bathing. I have to slather lots of cream over him.

There are other disadvantages. Burt doesn’t move much, so he experiences more frequent constipation. He’s lost a lot of strength in his legs.

He’s disoriented.

Communication between us is pretty rudimentary.

It’s hard to ascertain if he needs or wants something.

It’s lonely for me. I think he finds companionship in the stories he spins.

Since he is more confused than he had been, less aware of his surroundings and needs less moment to moment attention, I can find a little more time for myself.

Right now, that’s my plan. That’s the new focus. I need more time away from my grief and sadness.

Taking time off for myself even on the weekends (which Burt and I had reserved for just us) is another small point of pain. Changes and losses. Losses and changes. And cope rhymes with hope.

Expert advice

I am no expert on this disease. I play one around my house, as it were. I am as flummoxed by new behaviors as the next hapless caregiver.

We have been thrown under this bus. Each of us.

The onset of dementia in your partner can lead to confusion. His and mine. Burt and I are both lost in the whirlwinds of his LBD.

I am an observer. We have both been stricken. I often say that dementia is a disease built for two.

We’re in this together. I told Burt that a few weeks ago.

As confused as he is, he seemed to appreciate what I said.

He knows me, he knows me not

«That’s not a very LBD thing,« my support group leader mentions. It’s not, and I resent that.

There had been «a promise« that I would not be forgotten.

The word was people with Lewy Body Dementia tend to always remember their loved ones. It’s not like Alzheimer’s.

Well, Burt knows I am important in his life.

He just doesn’t recognize that I am in his life; by that I mean he thinks that I am not present. When I say hi it’s me, Tamara he answers where is she bring her to me. He’s always delighted and delightfully eager to see me.

He knows I am important just doesn’t realize I am there by his side.

I know it’s hard to understand, but although I would welcome his recognition, I am more distressed that he feels so abandoned.

Wouldn’t it be nice for him to know I am always with him? That he is not alone!?

It does hurt when his aide says what’s your wife’s name, and he gleefully mispronounces wife#1’s name.

Oh, well. He usually calls out for me. Me, by name.