this is our life

Foodie

Sometimes, something just predisposes us to enjoy a food.

Cooking has been pretty much out of my vocabulary for quite a while.

My favorite “meals” lately have involved some measure of yogurt, usually with nuts, fruit, and granola.

(No hot food, so maybe that was what predisposed me.)

I mix a breakfast cereal mush for Burt that is designed to offer fiber and protein. It is also caloric. It tastes sweet and fortifying. It is also delicious; I mean to say this objectively, as even he likes it.

Getting him to eat has been a challenge, not constantly as it once was. Pureeing seems to be making the difference.

Tonight, I pureed red skin potato in milk with several pats of (real) butter. Then I added cooked baby carrots and hit the button some more.

The result was a silky soupy pale orange ersatz Velouté. The flavor, texture, and “mouthfeel” felt so sensuous. I was reminded of our weekly lunches at JeanGeorges back in our day.

I am bragging, but this dish was perfect for today. I also had a yen for sunny eggs; I dipped them with a fresh slice of whole wheat bread.

Why I am up at 4

My circadian clock is resetting. I hit the sack at or before 8 or 9pm.

It’s a full seven to eight hours by the time the clock ticks to 4am.

Why so early to bed? you ask. Exactly. I lie down to help settle Burt, who after a nap from 6pm is suddenly on a talking jag. He might be anxious to “go home,” an anxiety undeterred by cheery outbursts from me. “Oh, aren’t we lucky! We are home.”

There might be a train to catch, likely and apparently the last for hours.

There could be some concern over his “job.” He has an urgent need to organize whatever has to be done.

What’s my excuse at the shank of the night and the [oh so early] start of the day? I am up with the cows to close the window as it might be getting chilly. I am awake organizing whatever needs to be done.

I have some anxiety over what will be despite so often seeing that what will be turns out differently than expected. It is almost other than I feared, “aren’t we lucky!” usually sooo much better.

Some thoughts and ideas might percolate to distract me, but they require writing down. And I’m up.

Transition

It’s in my journal. “Burt has so much trouble with transitions.”*

Then it hits me, Burt’s transitions drive me nuts. It takes so long for him to get up out of his chair. I timed it one day, and it took 45 minutes. That was with two of us assisting him.

I just get so antsy that I add to the difficulty.

On good days, I leave him to the aide. That way, my impatience doesn’t add a distraction.

Today, he couldn’t (I would say wouldn’t, but he no longer really has that kind of will) get off the bed.

I left him with his weekend guy and went to have a cappucino. [Nice new place on the corner of 77th and York, by the way.] I left because his inert position, sitting near the edge of his bed, was wearing on my nerves.

Of course, I know he can’t help it. I shake my head, saying Poor Burt under my breath. I’m just emotionally drained by this. It’s not rational. It feels unkind.

I need to walk away.

Today, I was handed a few other opportunities to be tested. After my break, I came back to help him to the bathroom.

He again could not move off the toilet but really wanted the pistachio ice cream I promised.

I went to pick that up and came back to help pick him up to go from the bathroom to the bed.

Each little transition of mine – going out for coffee and to the ice cream parlor – fortified me for the transitions with which Burt was struggling.

*Transitions were always difficult for Burt. They were integral to his anxiety disorder years and years before his LBD diagnosis.

Rest

There is considerable chaos 
Among the Chux on his bed.
He moans, complaining as he
Sleeps. If the dreams are hard
I will hear their wild stories in
The morning as he awakes to
Share the narratives of his
Imaginings and the pains his
Moans express. Yet his sleep
Is fulsome, generous, relaxed

A good week. I’m still stressed. But it was good.

Here I am. I am affirming my positives despite the stress of last week. Let me count the ways:

Burt’s surprise birthday party was a little too much for him, but he survived it w unusual stoicism.
AND had a couple of nice
encounters with Mel and with W in particular.
He also remembered MR as the guy from Brooklyn.
I really enjoyed seeing all the people.
His weekday aide coming was special for me, and Burt noted her presence. She also helped out.
L’s late drop in was touching.
The 2 Ds also made a late pop in on the way to a movie; they are such upbeat people
Very pleasant celebration so a🌷up to the party.
On Sunday, we ran into J at Sedutto’s. That was fun for Burt, too. She wished him a happy again and talked a little Brooklyn with him.
Then, on Tuesday my being able to GET OUT to the 6th annual and be part of the Caregiver Appreciation Event plus the writing group meeting & reading at AlzHQ was also a great and a special respite for me.
Extra points for being able to deliver the sample for testing to the doctor’s office.
Burt, being in his big brown chair when I came home from the Event to greet me, was ⚘️ a bonus for me.
Thursday’s OT went well for Burt, which seemed very important after his recent weakness.
Friday, he was again up and in his chair when I came home. No more fever this week after I shut the heat in the bedroom.
My Friday art (connections) group really connected; it was extraordinary for the sharing as well as the art.
A Thursday morning virtual “museum tour” proved very peaceful, as did that day’s deep water aerobics.
Positives, affirmed❗️

[I had a little extra stress from the unexpectedly threatening phone call that I got on Friday. You know that feeling when you shake everything off and then have a nightmare.]

Today, the hospital bed arrived and was assembled with none of the drama I anticipated. One more plus for us.

I did it again

Oversharing, longer answers than the question called for is the hallmark of my current convos.

A neighbor asked how I was doing. She was sincere, but I tried to be brief. Midway to just saying, “we’re ok, thanks.” I proceeded to add, “we just got him a hospital bed, so that’s a whole new level for me.” Ok. I know she can take it, [she works in healthcare], and her sympathy was genuine.

I just need to slow down the earnest spilling it all.

Found poetry

No, not a form of new age writing, just a poem which in our current context is sad.

I envy you,
remembering the
addresses of your
childhood

I remember nothing
Not even grudges or
The names of friends 
or neighbors

If memory is all we have
I have only you and our
years together
I remember all that
Every touch, every 
tender moment

Memories like that
are my blessing
My consolation for
all the unsung moments
Of my past

Sweet

In some ways, he’s more my child than my husband. He seems to acknowledge this on some level when he refers to me as his mother; of course, when he does, it’s part of his confusions, delusions, and hallucinations.

When I came back from an unusually late outing in which I enjoyed the hospitality of an Alzheimer’s Association party for caregivers, Burt was there to greet me.

It was sweet when he insisted on “waiting up for me.” He has had some trouble over getting up out of bed lately but struggled to go sit in his big brown chair.

That’s the spot where I tell him to meet me when we plan my homecomings.

And there he was when I came home and happy to see me. It added sugar to what had been a sweet evening.

Grateful

It’s easy to find little annoyances that “ruin” our day but honestly it’s just as easy to find gratitude.

I am heading to meet some fellow caregivers at a party. Alzheimer’s Association 6th Annual Caregiver Appreciation Event will be our first in person meet-up. Those of us who’ve been answering writer prompts will also share our pieces with the wider caregiver community.

I am so excited by all of this. Our aide rearranged her schedule so I would be free to go.

More room for gratitude.

I am dressed in a coat that is borderline too warm. This is an annoyance. My solution to drape it over my shoulders worked.

In the spirit of TMI en route to Midtown, I dropped off a urine sample. We’ve been puzzling out Burt’s recent decline. I will be very grateful if this helps.

After trying to get the sample for three days, I was singing the we got a sample song all the way down the avenue.

Traffic! Oh yeah, terrible today so I am grateful I chose to walk.

Too much

A side effect of Burt’s diagnosis has been my tendency to grossly overshare.

How are you is a simple question but my answer is overloaded. Too often full of the kind of detail we bill as TMI.

No simple answer. I try to keep it light or funny but I definitely talk too much.

I am grateful that there are still people willing to ask.