this is our life

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.

Valentines

Speaking of the day of hearts and flowers, and I did mention it, this is another particularly difficult holiday.

It’s that love stuff that gets us.

Most of us have seen our marriages transformed by Lewy [or, really, any dementia]. Intimacy is not what it used to be.

Love, of course, is a resilient and enduring emotion. It takes hold of our hearts and souls as much as it does our bodies.

It’s likely that, after a number of years of caregiving, you and your beloved are not going out for a champagne dinner. Probably not even a beer or soda pop one.

Our corner pizza parlor is already decorated in anticipation of next Friday’s revelers. The Cafe down the block stands ready to deliver on its very French prix fixe in 3 courses and a toast.

It feels like everyone is going to hang with their special someone on the 14th. Cupid is armed and ready. We’re in a fomo mode.

We miss the closeness. We miss the romance. I miss the sentimental cards – usually 2 – from Burt. It’s just not our holiday anymore.

Speaking of gratitude

As I suggested to you, because it was suggested to me, it really helps us focus on the caring when we note at least one positive interaction with the one we love.

I dare say, this is true in civilian life also but for us who are caregivers, it’s a monumental help.

I had two dramatically beautiful positives to note in the past two weeks.

I will note that just the small improvement in Burt over the last few weeks was a positive as well. His increased awareness and engagement led to these lovely moments with me.

Feeling that I had been neglectful while preparing his breakfast and enjoying mine, I came into the bedroom. I took his hand and said «you put up with a lot from me and I appreciate it.« Burt did not skip a beat. Looking straight at me, he said «I appreciate you.«

That still brings tears to my eyes.

This week when I paused feeding him to say I love you, Burt extended his hands in a clap. It’s touching when a declaration of love gets applause.

Happy Valentine’s Day!

There are many small positives in our engagement with the ones we love we can applaud.

Burt is often funny. He loves to make a joke and will laugh at it heartily. These are day in, day out sweet exchanges we share.

As I document them here or in my journal, I am grateful.

The practice of care

Best practices include the care of our darlings but as caregivers we need to look out for ourselves.

Care for the caregiver includes respite, a topic dear to me and upon which I have expostulated at length.

Self-care can and should be done in the company of others. Spend time with friends.

I have lunch with various friends regularly. This is a great respite activity, but having visitors come to see us is also of benefit.

Support groups! Yes. I participate in a bunch. For LBD specific support there’s an online memo board through LBD Caring Spouses which is miraculously helpful. Much of my ideas for Best Practices came from that group.

Lewy Body Dementia Resource Center has a hotline and you can call to talk to a person who knows LBD. I also participate in a couple of their zoom meetings.

My support network extends to a wide circle. I meet with a group facilitated by the Social Worker at the neurologist’s office. I have also had one-on-one meetings with her.

Alzheimer’s Association has lots of groups, including one that gives me another creative outlet. Caregiver’s Expressions taps our writing skills to tackle the issues of caregiving.

I journal as well to document feelings and events. I blog here. The two (I guess 3) are different and similar.

I advise you to journal. Keep track of the daily changes. Most importantly, write one point of gratitude for each day. I attended a webinar that advised noting one positive interaction with your loved one each day.

It shines a light on your raison d’etre, your purpose in caregiving.