Losing him again

He’s been several people over the past many months.

Well, this is not at all unexpected; aren’t we all many people over a lifespan.

I look at him sleeping now and regret that I can’t recall with any confidence what he was like two months ago or four years ago.

I know who he is most days these days. He falls asleep at the drop of a spoon; when he’s awake, he stares and makes noises.

Burt seems to be talking, quietly to himself. He does communicate. His aide coaxed a big smile out of him the other morning. That was delightful.

Burt is living in two dimensions; his life seems flattened out.

I want to remember the Burt of a couple of months ago. He was lively; he was mobile and social. We communicated amicably then.

I want to recall our life 20 years past when we came home from a show at a downtown theater or across town at the ballet.

My memory of what he was like  is vague. I want it to be more vivid.

It will be, I am sure, when I need it to be.

Careful what you…

When Burt was newly diagnosed, he was feisty. He was difficult. He was contrary.

His willfulness made it hard to divert and redirect him. He would argue, fight, and dispute my plans for his care.

I would say (or think about) all those stories I had heard of dementia patients who were sweet and docile. Why hadn’t my spouse become an easygoing guy? Why wouldn’t he just sweetly go along?

Since his months’ long decline, he has been sooo much easier. He doesn’t complain and only reacts with a little anger when our shifting him in bed scares him. Generally, these days, it’s only a cry of fear. Once upon a time, we could count on his cursing us.

He’s that easygoing guy now. Like many things characteristically Burt, I have come to miss the curses. He’s so sweet that his mild temper makes it easier for us to make loud noises or turn on lights. These things usually no longer annoy him.

He seems content, but he’s seldom as happy as he was when something tickled his fancy or amused him.

I miss Burt’s reactions of annoyance and displeasure. I miss his highs and signals of joy. I miss the tough guy. I miss the laughing guy. I miss the feisty, difficult guy.

I miss Burt.

This will surely help

My mind reverts to the wisdom that warns us who are caregiving that «the cavalry isn’t coming.« It isn’t and we are, surely, on our own.

In fact, if there were a cavalry, we would have to be the one to lead the charge.

We don’t have a cavalry that will save us from the circumstances into which we’ve been thrust.

But I know that there are many helpers on this journey. Lots of support. A plethora of it, in fact.

My network of dependables has recent additions such as the VNS nurses his GP prescribed. It’s very helpful to have their assessment.

A PT from the VNS agency came along for the ride.

The entire crew of VNS help has been calm. They are respectful. They are matter-of-fact and they work without urgency.

The physical therapist gave Burt an excellent work over. I was so happy to see how he exercised Burt’s muscles and eased his joints. Burt was again fast asleep almost as soon as the PT left.

The sleeping is one disturbing new symptom of a continuing decline.

I am fortunate to be able to meet the decline with additional help. Help comes in the form of lots of different services.

My planned 24 hour in home aides come with access to a social worker assigned to us who will make regular check-ins starting with a pre-assignment call and a visit during the first week of the expanded schedule.

We will continue with in home PT/OT from Fox Rehab after VNS finishes their contracted ministrations.

The care coordinator at the home health agency can be a sounding board even before you reach the 24/7 level.

The home health aides are part of your team as well. They watch your loved one and they notice details; they are a part of the cadre of professionals who help me.

I mentioned the at-home dental care that Burt received. That is one decidely helpful service available to the caregiver.

Your neurologist’s office should have social workers to work with the spouse. Perhaps your primary care physician has a social worker on staff as well.

CaringKind and the Alzheimer’s Association, LBDA and LBD Resource Center are supportive agencies offering classes, support groups, and social workers you can talk to.

You have questions; if you’re akin to me, you panic, are uncertain. Build your village. It’s a team, not a cavalry.

It’s people who understand your need for a cavalry. Connect with them; they’re your team.

A visit from the dentist

Burt had a visit from his Geriatric House Call Dentist. This was his second such; Dr. K saw him about 6 months prior.

Of course, she noticed the huge changes in his condition.

He has a loose tooth we were considering extracting. We did not do that this visit but have it scheduled.

I asked his general practitioner’s advice on the advisability of this procedure.

He was cooperative and brave and shouting the whole time his mouth was cleaned.

Afterward, he told his aide it was a nightmare.

This morning, I wondered if the dentist’s administration made him feel better. He gave out a considered “ahha,” long and sincere.

I certainly hope I’ll get the same acknowledgment from him after his tooth is pulled.


Again and then

When your heart breaks, you
Can only think "oh, I love you " 
No one should love so much
That it hurts so much. Maybe.
Eschew love. Altogether. You
Would be spared the pain, the
Intensity of the despair that 
Loving brings. Maybe. I love
You too much to care that it
Hurts, that your pain is mine,
That my heart breaks for you,
That I have lost you but that 
That loss is ongoing, that I
Will lose you again and then
Again.

Morning musings

He falls asleep shortly after I feed him. While he eats, he has the penetrating look of a serious child. He chews slowly, with great deliberation. He grabs my hand, the one holding the bottle to his lips, when he drinks.

It all breaks my heart. There is a picture of Burt at 16 sitting on a chair in a field. I have often said he looks like a heartbreaker. I had no occasion to have my heart broken by that beautiful boy. This one does so now.

He is asleep at 8am but at 4 I heard him talking. He spoke rather sharply and crossly then. While I fed him around 7, he was nothing but gentle if inquisitive kindness. At 4, I stopped by his bed with my customary greeting of “I love you;” I was only there since he was evidently awake. He wasn’t speaking with me; all the boisterous conversation was for the phantasms in his world.

My heart breaks at having to acknowledge that he is mostly in his own world.

It breaks at being excluded and outside that space, although my head is grateful not to be enveloped in his hallucinations.

My heart breaks at how often I am obliged to answer with a neutral “I don’t know” or “My, that’s interesting” simply because I don’t understand what he’s saying.

It breaks because I am on the lookout for something in his words that might be alarming to him. I want to sense and stave off fears he might be garbling at me.

At one moment, when I heard him distinctly ask “What should I do?,” I said oh you’re good, you don’t have to do anything. My heart felt relief that that relieved him, and, yes, it was also once again breaking.

Valentine’s: a deeper shade of red

I am going to mix the art references like a can of V-8, so apologies up front.

Yesterday was Valentine’s Day. I know that for those of us who are caregiving, it’s acquired a new and more shaded meaning.

For me, the romantic love at which Cupid’s arrow signals, has a patina of sadness. It has also developed a deeper shading these last few years.

Of course, strictly speaking, as I care for Burt, our love is no longer a romance. It once was. We were given to PDA on any given corner. (Get a room someone shouted from a passing car. Mind, we were middle aged people, comporting ourselves thusly on a Manhattan street corner. Clearly a fond memory for me.)

Intimacy is different without the palette of physical actions.

Up until recently, we were still publicly affectionate; I made sure to kiss him before I left the house. His hacking cough suggested I should reconsider the habit.

Are there racier, more colorful memories that his touch can bring to mind? Yes. They overlay the present, add the vibrance of what was to what is.

I maintain the publicly verbal displays of affection, repeating “I love you” whenever and with whomever else is in the room.

I love Burt with an intensity I never thought possible.

My color doesn’t alter. I do not blush, cheeks reddening, at my bold declaration.

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.

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?«

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