this is our life

A sea change

Burt’s roller coaster has just been on one dip after another. His being bedbound poses a serious risk. Today we are expecting a visit from a nurse from VNS to assess the damage.

We are treating two sores and the beginning of one on his butt cheek. Perhaps the nurse will have some added wisdom.

New York State has a “waivers program.” It is meant to keep patients under its umbrella at home.

Starting Mar 1st, we will have 24 hour coverage.

I look forward to additional help to make Burt more comfortable. I have both hope and trepediation.

It will upend our lives, mine most in particular. I have set up an alcove in the living room as a bed sitter space. I tested it out last night.

Burt had been asleep when I came home and was sleeping still. I retreated to the bed in the living room. I fell asleep reading and awoke to hear him talking.

At 5:30 a.m. he was awake enough to eat the dinner his aide had intended for him.

His conversation while I fed him was mostly gibberish and included the need for me to identify myself. He seems so happy while I feed him, cheery and talkative.

He said something unintelligible but concluded with “she was nice to talk to.”

Soon we will have people around, or rather a person to make sure Burt is dry, to turn him to relieve the pressure on his skin. There will be someone here for him. I feel inadequate to the task on my own.

We will be able to go with Burt’s schedule. Those evenings that he slept through supper, he can be fed and get a drink at midnight or whenever he’s awake.

It will be an accommodation for me. I will manage, I will have help. I have both trepidations and hope.

Woke

Staying woke requires I stop buying from Amazon. We caregivers are prone to order from the mega-company as they have everything.

I switched to a small family owned purveyor of incontinence and other caregiving products.

They do not have everything I am accustomed to get.

Carewell should help with our needs well enough. An early foray has met expectations of quality.

Today

He is sleeping more.

Some days, he sleeps through a meal.

Other times, we skip his night time meds. These are mostly to help him sleep so that’s okay.

His constant talk is baffling. It’s hard to tell what he’s saying.

He often talks in his sleep, although even when he’s awake I often can’t understand him.

Mostly, he doesn’t require a response. I often offer “I love you.”

This morning although the rest of his conversation was gibberish, he answered my “I love you” with a completely clear «What’s that, darling?«

Day to day

There is so little that changes by any magnitude.

Burt remains in bed. He wriggles from his side posture to lie on his back. He shifts from the middle to which we’ve struggled to put him until his head leans on the bed rails.

The bed rails were causing a dent on his forehead. We instituted a hat protocol. We added pads over the bed rails. The material from the pads made his skin breakout. We got faux sheepskin to cover the pads.

Pressure sores are a monumental danger at this stage. We are doing our best. Vigilance, cleaning, the application of creams and wound coverings. A turn to his side to take pressure off his butt helps a little.

Communication is prone to being a frustration these days. I pursue some conversation nonetheless. He is saying something, but too often it’s something I cannot comprehend. When there is any thread I can pick up, I try to pursue. In the middle of one of our exchanges, he might turn to the companions in the ceiling to chat.

Music is a sometime thing with us. It may soothe. I let YouTube accompaniments play as long as Burt seems content with the content.

The caring is both easy and hard. It can be physically demanding. Tending to him also can bring me joy. There are moments when just sitting with him is relaxed and relaxing. There are many things to break my heart. It can be emotionally challenging to see him so confused and unmoored.

So little changes in our day-to-day these days.

My Burt

Burt looks through his intense old man’s eyes, with a seriousness that is touching. The look is fully reminiscent of the boy in him.

Like that boy, he is sorting out the ways of the world.

Conversations that draw simple and astonishing conclusions flow much of the day. He has lots of questions and gets many answers.

He talks to someone and to noone in particular. He is not dependent on any of us as interlocutors.

His eyes have become deep set as the structure of his skull and face elongated.

His cheek bones are more pronounced, underscoring the intensity of his gaze.

Intensity and seriousness are not usually linked to childish as a descriptor.

Nonetheless, my Burt has that innocent quality now.

I find it engaging. In fact, it melts my heart.

He is no longer difficult. Some days, he sleeps a lot. I no longer worry that he’ll be up and active all night.

He likes when I tell him I love him but he generally no longer responds. I can get a smile of pleased surprise sometimes.

He makes no demands as he once did. In fact, we have to assess that perhaps he’s thirsty or needs a meal. He makes no complaint at the red unhappy irritation of his skin.

He’s only secure in his bed and when we shift him, he worries at being displaced. This is the only time he reacts sharply. He flares up, seemingly angry, but actually scared at being moved.

He might call out quietly but insistently for me on occasion. Sometimes the calling out is from his sleep, sometimes not.

He is sweet mostly. After he flares up, angry at being repositioned, he will resort to his friendly self, and thank the people he cursed when he was afraid.

The thanks may come with a handshake. He likes to hold a hand in that remarkably strong grip.

Maybe

At 4am the other night Burt said «my wife was here but she ran away.« I said I love you.

Today I am wondering as he says where’d she go (meaning me, I think) if he misses me the way I miss him.

I tell him I love him often. Often he gives me a message for her (meaning me), and my saying I am your wife, Tamara, makes no difference. The dynamic of my being here and elsewhere makes more sense to him than my mere presence besides him.

In this context, I guess it can also make sense that he misses me. He talks I concur but since I don’t understand, we are not holding conversation.

I miss him. I miss communicating with him. Maybe he misses me, too.

Jazzy

My discovery on my pared-down- no-more-cable teevee of jazz videos wingtailed nicely with an email. My friend BW found the must hear 20 jazz hits.

More on those soon. I’ve been spending a lot of time with Night time jazz cafes. So let’s talk about those first.

This is a category of YouTubes which I happened upon. The mellow music plays over a background of snow falling. It’s easy-going, not particularly progressive, not too swingy jazz.

It suits as as background and I played it Satutday morning at breakfast.

The email arrived in a timely manner to play during lunch. Nice playlist. There is something about best of lists, I must say. They are subjective. And the world of jazz is wide.

Enjoy the selections. If you prefer a classical selection, search for classic piano with snow f’r instance. The internet can be so specific!

It’s the little things

What’s your favorite candy?

Memory is a blessing. We can live in and relive our favorite things. And the things we loved that maybe are now lost.

I mentioned that moment while I stood by a V’Day display of chocolates and realized Burt no longer could appreciate that Hershey bar.

That small realization came with sadness.

Now chocolate bars moved to the loss column.

The little things, the big things (romance, his cognition) just kind of pile on. The bigger things hurt but they don’t surprise. Oh, a big lapse in reasoning or judgment can sneak up on me, but its not unexpected.

It’s unwelcome but you could see it coming.

The little losses, like that Burt no longer misses his watch, carry a pain that feels both petty and profound.

A hiccup [story]

As we were finishing our lovely lunch, my great friend S started to hiccup.

My hiccup wisdom came in play here.

Burt, I said, had been hiccupping. I hadn’t noticed but then I did. An online support group had shared this issue so I was primed.

In Burt’s case, it was likely an autonomic whatever problem. In [S’s likely we were gabbing while eating. Come to think of it, I have to admonish Burt to swallow before he talks. Hmm.]

Burt had been hiccupping heavily for a while. He doesn’t complain of real pain but I saw him wince during a bout of hicculping.

Let me explain my real pain comment as an aside here. Burt yells ouch if he cramps. He screams when we turn him; that’s fear of falling, not pain. When he says ouch and I ask, he can’t articulate what hurts. I know that when I touch him with a cold hand that he’ll say that hurts.

I realized that the frequency and push of the hiccups was hurting his chest.

When I asked Burt’s wonderful physician to prescribe Lyrica (per the wisdom of my Lewy tribe), she said no. Let’s start with sugar.

I gave a spoonful of sugar to Burt as directed. A cold sip of water as a chaser was helpful. S followed our doctor’s orders as well.

Ambiguity

There is a pet term for the grieving and loss we feel as our loved ones dwindle and decline.

As they lose themselves to confusion and disorientation, they are lost to us. Sometimes, the diminished cognition, reductive common sense, and other unraveling occur over many years. Each new feature of this unwinding is another loss to us.

Pauline Boss coined a term for this by describing our emotions as our loved one slowly drifts away as ambiguous loss and anticipatory grief.

Yes, we are grieving while they are still present and alive. We are experiencing their absence while they are still with us.

Those facts make for both ambiguous and anticipatory states. But there is nothing ambiguous about caregiver losses. Our grief and our loss are very present and very clear. Anticipation and ambiguity won’t spare us the sorrow at their passing.

We will suffer grief and loss again, of course, when our beloved dies.