Alzheimer’s: I Wish I Could Help More

I wish I could do more to help Carl.  I wish, to the most wonderful stars in Mr. Sagan’s Cosmos, that I had some way to do more to help my friend.  To help my best friend in the world – at this time, when he needs help more than he has ever, in his life, needed help.  At this time, when there’s no other person or place or power he can look to for help.

But that’s exactly what every other Alzheimer’s caregiver feels, isn’t it?  Millions and millions and millions of people.  Even if their situation isn’t exactly the same as mine, they fervently hurl an identical plea into the implacable ether.

Carl’s Concerns

Carl and I recently went to Longwood Gardens, two days in a row, to see their Nature’s Castles treehouses.  I want to write an article (or a few articles) about the treehouses, to post on one of my blogs.

As we were coming home, both days, Carl was worrying about having no place to go.  He was fretting about having nobody.  I assured him repeatedly that he lived with me – that I was his friend – that I loved him – that I would take care of him.  But he continued to be upset and concerned.

“But you’re not always there,” he said.  I told him that any time I go away, I always come back.

He continued to fret – until I mentioned that we had haircut appointments that evening.  From that point, he asked me, over and over, what time the haircut appointment was.  And where would I be?

Recently, Carl has had periods when he seemed particularly confused and disoriented.  And he’s been worrying about this confusion.  He’s started asking me when his next neurologist appointment is.  He has somehow gotten the idea that something is very wrong, and he needs to make things better – and that idea has an optimistic ring to it.  I keep assuring him that the doctor already has him on the best combination of medicines available.  But, of course, that doesn’t stop him worrying.

Every night, he wonders where he’s supposed to sleep.  And he’ll ask me where I sleep.  I always tell him that I sleep with him – I just go to bed a little later than he does.  And he’s amazed that he never sees me.

Most nights, when I get into bed, he reaches over and says Hi.  But he doesn’t remember.

My Concerns

Part of the problem here is that Carl’s expressed concerns mirror my concerns – concerns that I try to keep to myself.

We’ve both been out of work for several years.  For some time, we lived on our savings, but we’ve exhausted those resources.  More recently, my family has been helping us, but that can’t continue forever.

There should be a way for Carl and I to survive – possibly even thrive.  But I’m not very accomplished at discovering that sort of opportunity.

I wish I had the resources to know that I could take care of Carl.  That I could take care of both of us.  But I don’t have those resources.

However, I’ll persist in trying.  And perhaps I’ll succeed.

I guide Carl through his day.  I watch out for him endlessly.  I touch him often – I hug him tightly – in a hopeful attempt to keep him from feeling abandoned.  I massage his shoulders and back quite often – in the shower and other times.  I try to keep him feeling connected and supported.  I imagine that touching will stimulate nerve pathways and keep a few of them from shutting down quite so soon.

But I need to spend time in my study – working on my writing and research – working to find a way to support us.

I wish I could spend more time with him.  I wish I could do more things with him.

I wish I could hold him more – and reassure him more – and always do my best to keep him from feeling abandoned.  I wish I could take him places – keep him active – keep him distracted.  Keep him, as much as I can, from worrying about his situation.

This morning, Carl didn’t sigh his way through breakfast, like an ancient locomotive – which is what he’s done these past two days.  He didn’t have to go back to bed for a while before we could get a shower.  And we went out and ran several errands with no difficulty.

Over and over, I sent my thanks to the stars.  And I have hugged and touched Carl that much more often today.

But this afternoon, he’s still asking about the doctor appointment next week.  He’s written it down two or three times, but the question continues to plague him.

At one point, he said, “I don’t think I have long to go.  But that’s life.”  I’m at a point where the remark didn’t shock me – or even startle me.  But I’m not happy that I couldn’t think of something helpful to say.

So …

Carl keeps saying, “What would I do without you?”  I try very hard not to think about the answer to that question.  Or even about the question.

As Valjean says to Javert, about Fantine’s child Cosette, “There is none but me who can intercede.”

I just wish I could do more to help Carl.