Category Archives: Alzheimer’s and illness

“Does It Get Easier or Harder?”

Accepting one's Alzheimer's, Alzheimer's and illness, Alzheimer's Spouse Issue, , , , , ,

Does it get easier or harder? asked my friend Jane, who writes the daily blog MemoryforTwo. Her husband is where Ralph used to be a few months, or is it years, ago.

Not having a memory is not so bad, Ralph said to me last night as he watched me wash the dinner dishes. (He doesn’t remember that a few years before his Alzheimer’s diagnosis, perhaps presciently, Ralph half-jokingly founded the Lower Expectations Society after therapy helped him realize his demanding nature worked against happiness. LES became his battle cry every time something went wrong.)

In a way it has become easier, in that I have accepted the reality. I answered Jane. But life keeps narrowing.

I remember when I was going through what Jane is now. The daily shock to my system with each change in Ralph I had to face and learn to accommodate. Who is this man? I’d ask myself.  How do I explain him to others? How do we go forward? It felt like being knocked down by one wave after another breaking against me. I’d stand up back up only to be knocked down again. Now the water is deeper; I am at the spot in the water where I can still stand but where the waves are not cresting. 

 Ralph is not typical. His diagnosis was six years ago. By now most people on the Alzheimer’s spectrum have moved further along from MCI deep into Alzheimer’s. Ralph’s slide has been so gradual that I feel boring when I describe our life now. The vise we’re in is tightening but slowly enough that we barely notice.

So acclimating has been dangerously easy. Ralph, originally so anxious and frightened by his memory loss, has been content for a long while. And as more and more memory holes appear, he becomes only more passive. What do I need to remember when I have you? he also said last night. I had a flash of anger; after all I was washing the dishes while he sat watching, just as he had sat watching me prepare dinner.  

But the truth is more complicated. As his short term memory worsens, I expect less from him. Our life together does narrow. But I am minding that less. In some ways Ralph is my excuse to relax into myself a little, to let go of some of the expectations that weigh me down with perpetual guilt–like why don’t I follow a stricter exercise routine or finish another novel. 

The truth is that I am getting more selfish daily. And I don’t mean that in a bad way.  I am typing from the turquoise chaise lounge in my new home office filled with books and pictures and a view of treetops and sky. I makes plans and decisions—how to decorate this new house, where to go with the family bubble for a covid-safe July 4 outing—according to my preferences. I cook dinners I want, and sometimes (this is a bit hard to admit) I keep a best bit for myself because I know Ralph is basically indifferent as long as he gets his nutty buddy for dessert. Of course he is always a major part of every equation: his safety, his personal comfort, his dogs’ comfort.  

I take what selfish joy I can for myself and give what comfort I can to Ralph. But I don’t bring up to him the truth I can’t get away from, a truth he has forgotten and I see no reason to remind him of–that his condition will get worse. And when it does, I don’t know how I’ll feel.

 

 

NO MORE NORMAL

Alzheimer's and illness, Alzheimer's Spouse Issue, Alzheimer's succeptability to illness, Alzheimers corona virus, corona virus, Uncategorized

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Since Ralph was released from the hospital for a bacterial infection, Ralph and I have been living a miniature version of the chaos the larger world is experiencing.  Without going into details, he has been more or less bedridden, getting up for the bathroom, occasional meals (though mostly eating in bed), follow up doctor visits and his daily infusions.

Meanwhile we sold our farm and I turned 70. Both events should have been moments to stop and reflect, but reflection will have to come later. I was too busy packing, working, and caring for Ralph. As for Ralph, he witnessed the sale without emotion—he had to be at the closing to sign off—and didn’t really notice my birthday at all.

So for two and half weeks we’ve muddled along living in a bare house we no longer own—a friend stayed with Rick and got him to his infusion while I did a fast drive down and back for the scheduled furniture move. The plan was that Ralph would finish his antibiotics and get his final doctor check out Monday and we would drive to Nola on Thursday (Tomorrow as I write this).

Meanwhile the corona virus began to spread. But we have been more or less isolated anyway so not paying a lot of attention. There was talk among my friends whether to go to lunch for my birthday/farewell gathering on Saturday. Four of us went for dumplings and fist bumped goodbye. We all were still joking then.

But by Monday no one I the country was joking. But while most people were concentrating on the virus, Ralph and I were focused more narrowly on his back. Saturday, the morning of my birthday Ralph had begun complaining of a backache He doesn’t remember doing anything to himself and I witnessed nothing unusual. But by Sunday morning he was in serious pain that only got worse.

On Monday at our appointment with Dr. P. we learned the blood work from Sunday showed a small rise in his white blood count we hoped had to do with Ralph back pain. Dr. P suspected an injury rib and sent us for an x-ray. He also sent us for more blood work this morning so he’d know the results before we leave tomorrow.  But he wasn’t worried.

So when everyone was hunkering down to self-isolate we were zipping very slowly from one medical office to another. At home Ralph slept, of course, as I packed up the leftovers that couldn’t be moved until the last minute.

Well there is no broken rib, but the x-ray showed inflammation in Ralph lung. (And yet, the nodules in his lungs three weeks ago are still present.) Not a lot of inflamaton and only in a small corner but too much to discount completely. The blood works shows his white blood count is back to normal but some other measure, I didn’t understand what, is higher than it should be. Although he has no symptoms, Dr. P. mentioned the possibility that Ralph might have pneumonia. His voice was almost too calm. I responded with equal, fake calm. Pneumonia is not a good thing to have ever, but right now if you’re a 73-year-old man with early onset Alzheimer’s, it is a particularly not good thing to have.

We are still leaving in the morning. After talking not only to Dr. P. but also to our doctor/friend Andy and our nurse practitioner daughter in Nola, the consensus is to go. Ralph has medical appointments scheduled there. We can self-quarantine one place as easily as another. And we can’t keep camping out in someone else’s house.

I am by turns crazed and sanguine. Since no one is seeing anyone, leaving friends feels almost anti-climatic. As if I am not leaving the world I’ve inhabited since I was 21 years old. Ralph, on the other hand, is blasé. When his back hurts it hurts, when it doesn’t he can’t remember it ever did. His cognitive impairment, has not bounced back to its old plateau. His life list is out the window. He can’t remember if he’s eaten, if it’s morning or afternoon.  If I say something about a virus, he looks at me struggling, and then his face lights up. “Oh, you mean about “Sars. Is that a problem again.”

Our little personal drama feels very important and scary to me of course, but we are really quite lucky. Actually all of us are. We are in our own homes (or will be) with decent food (and toilet paper) available. We have a supply of water, working utilities. We have means to communicate and be entertained.

Ok, I am not this cheerful, but it’s worth a shot.