this is our life

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.

Best practices

One of my goals for this site is to offer guidance where I can.

I want to list some ideas and tips that I have found handy on our journey.

1. Burt had some trouble vis a vis food early on. It worried me. I was feeding him lots of lemon meeingue pie and eggs for a while.

Since I transitioned to puree, he gets variety, eats more, and eats better.

If he weren’t having trouble chewing and swallowing, I would not have brought in blenders. I am thrilled that I did.

2. Pills have been crushed for easier intake for a while.

To get those down, I was using conventional wisdom and mixing with applesauce.

Greater wisdom came from one of my support groups: applesauce gives the meds a bitterness. Use strawberry jam. Burt loves it.

3. Skin care is more of an issue for us since Burt has been in bed. We solved a problem of keeping Burt clean with a product called Tena 1-2-3. It’s a cream cleanser that doesn’t require water.

Now, we need to fight off sores. Burt’s doctor pointed me towards a cream that is very effective. Triad cream goes on smoothly and keeps troubled areas from bad breakouts. [Fingers crossed. Knock wood.]

The suggestion to turn him and change his position is basic. I bought an aid called SexySamba on Amazon to assist in turning.

Art for art’s sake

Squid Pro Quo is part of my respite care.

I participate in a program that uses art as a tool for connection. The respite for me has added value because the other artists are not caregivers. It’s more a general population (albeit all of us older adults) group.

It has been very soul-satisfying to me.

This craft project was done at Caregiver Appreciation Day. Also, a very satisfying afternoon.

Basic Burt

In the course of an hour or so, Burt was holding on tight to his aide’s hand. He took mine with his free hand and continued an elaborate explanation. His chat was freewheeling and pleasant.

He’s been sweet like this of late. No arguments or accusations.

This is Burt down to his basic self. He’s sentimental and caring. He says thank you quite often. For my part, I always respond with a “you’re welcome.”

He always liked his thank yous to be acknowledged.

Burt at his best self.