Tag Archives: Alzheimer’s and drinking

How Is Ralph Adjusting?

 

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How is Ralph adjusting? That’s the first question I’ve been asked in most of my conversations over the last six weeks (i.e., since my last post; God knows where the days have gone). People, particularly that growing list of old, almost lost friends I’m back in contact with, are understandably concerned; after all Ralph has had to adapt both to a strange new house in a strange city and to the new strange reality of a world ruled by the corona virus.

The answer is simple. He is adjusting just fine.

In fact, he has been living pretty much the same life in our New Orleans house that he lived for the last six years on the farm: rising late, reading and hanging out with his dogs all day, drinking his late afternoon beers, dinner followed by a Nestlé’s Drumstick for dessert, asleep by eight at the latest.

In some ways the adjustment strikes me as almost too easy. Limitations suit Ralph all too well and so do the lowered expectations that have crept in. Since his hospital stay he never went back to following a life list. Instead, I do the remembering: I give him his pills in the morning and tell him to shower (checking the towel to make sure if I’m not around) and eat breakfast. He eats a peanut butter sandwich for lunch, actually sometimes for more than one lunch since he’s not always sure he’s eaten when I ask and better to eat twice than not at all. He spends pretty much the rest of the day “reading” in bed or sitting on the porch with his dogs. He no longer even thinks of smoking or driving. Or listening to the radio although there is one by his bed. He still drinks beer. But since he can’t drive and doesn’t know where all the closets are in this house, I control his intake in a way I couldn’t before. I put three in the fridge and when he asks for more, I explain I can’t because of the virus. In fact, I am thinking of switching to non-alcoholic beer to see if he notices. He eats whatever I cook for dinner while we listen to NPR or his preference Pandora; he no longer keeps up a pretence of an interest in the news and gave up on following television ages ago.

His main focus now, even more than on the farm, is on his dogs. They never leave his side and are all the companionship he seems to need. Although he and I have only the most basic conversations, I can hear him chatting with the dogs on and off all day. The dogs may not have the space they used to, but they seem satisfied with their yard and the ease of access in and out from our bedroom although happier with their constant attention and….

OOOPS. AS I WAS WRITING THE LAST LINE I HEARD A COMMOTION AT OUR FRONT DOOR. Ralph was calling the dogs frantically. He had forgotten my warning a few minutes ago not to use the door because our gate was open to let the men making a repair outside. Now the dogs were loose, about to disappear into the streets of New Orleans. I ran downstairs. I yelled unpleasantly at Ralph, What were you thinking?! as I flew past him to grab Lola the younger dog before she ran away.  In fact she was happily peeing under a tree just outside the gate. The older dog was merely confused, not unlike Ralph, wandering between house and sidewalk.

I admit that once all three were safely inside, I snipped at Ralph again when I realized his plan had been to sit on the porch with the dogs and a beer—it was not yet 1:30 as I barked at him. Of course, in the excitement he had already forgotten his unopened beer can on the porch anyway.  I took a breath and re-found my patient voice, then suggested he look at his cell phone for the time.

I didn’t know it was so early, he said amiably and went back to his room (officially “ours” but practically his and the dogs until the minor but stalled renovation can be completed on his “studio,” attached to the garage but entered through the dog yard and only steps away from our bedroom door). Peace is restored. He has also already forgotten my lost temper—no need for apology or forgiveness these days.

Whatever I was going to  describe ten minutes ago is forgotten as well. All I am thinking about now is how we used to argue about everything, how a small mistake or misunderstanding could unleash all kinds of larger angers. How ugly the temper flares could be, how cold the silences. I can’t pretend I miss the overt tensions that mushroomed so quickly between Ralph and me for years and years of our marriage. But I am not sure what to think about our lopsided relationship now. So much responsibility on my side, so much contentment on his. So much resentment on my side, so much loving dependence on his. I can’t say I envy him, but sometimes I do.

OUT OF THE HOSPITAL AND BACK INTO ALZHEIMER’S QUESTIONS

 

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The good news:

Ralph got out of the hospital on Friday afternoon seven days after he was admitted, once the infectious disease lab was able to pinpoint the bacteria and determine which antibiotic he needed. By the time he left his white blood count was back to normal and he had a sense of humor back. The nurses loved him.

 

The bad news:

The bacterium was rare and hard to pinpoint because it came from the mouth of dogs. Since the onset of his MCI, Ralph has had an obsessive need to scratch at the dry skin on his hands, to the point of breaking the skin, so it is likely the infection came from a lick for one of his two best friends.

 

Other bad news:

Ralph has to receive intravenous antibiotics daily until March 16 and because I know my limitations as a nurse, I am not attempting to give them at home. Instead, I will be driving him to get them at the infusion center at the hospital every morning. Our plans to move to Nola on March 5 are obviously delayed.

 

Other good news:

  1. 1. We get to wake up to this view again; since Ralph can’t climb upstairs at this point, I moved the guestroom bed down.
  2. 2. I have learned to ask for help and have received it from so many people. Friends will come stay with Ralph for two nights so I can go to Nola just long enough to meet the movers and set up furniture as originally scheduled. An other friend will bring the dogs down in his truck—actually what was until today Rick’s truck because I have arranged to sell it to him, one large chore off my list!

 

Both good and bad news:

  1. 1. Ralph is happy about the sale and shows no happiness about no longer driving; I am torn between being glad Ralph is not putting up an unpleasant fight and sad that one more part of his identity has been chipped away.
  2. 2. Ralph has stopped smoking cold turkey because a cat scan showed tiny nodules on his lungs that could either be a result of the infection or pre-cancerous. He will have a follow up CAT scan around the 16th to see if the nodules have shrunk. Meanwhile the doctors told Ralph no smoking and he agreed. Of course he doesn’t exactly remember but he continues to agree every time I remind him. And he is not showing any major symptoms of withdrawal.
  3. He also has not asked for a beer, which is good, but then again he has very little appetite in general, which is not so good.

 

Beyond Good or Bad

Ralph’s bout with physical infection has given me a lot to think about as I try to evaluate how much being on the Alzheimer’s spectrum might have affected his physical health and how this physical crisis might affect the progression of his Alzheimer’s.

According to medical people, being on the Alzheimer’s spectrum probably did make him more vulnerable to illness and/or caused his reaction to be more extreme. It certainly made it harder for me to detect something was seriously wrong with Ralph. I am pretty sure the signs of the infection would have been obvious sooner in someone without Alzheimer’s; after all what might seem abnormal in others—sleeping too much, inattentiveness to one’s physical state, lack of appetite, mental withdrawal—seemed almost normal if exaggerated behavior in Ralph. And he never articulated that he was feeling sick.  I don’t feel guilty that I didn’t catch on sooner; if anything I feel lucky I caught on when I did.

What concerns me more now is the ambiguity of his condition now. I have talked about adjusting to “the new normal” as Ralph and our relationship change. Now Ralph is very changed. The no smoking, no beer, no driving are in their way shocking changes. I have professed to wish for them, yet now I see them as scary sign posts if permanent. IF–I suspect Ralph’s taste for beer will return and a fight over smoking may loom in the future.

What I don’t know is whether this physical crisis will have a permanent effect on Ralph physically and mentally. That he is incredibly weak at the moment is to be expected while recovering from a major bacterial infection and while taking strong antibiotics. But I don’t trust he will bounce back. He cannot hold onto the memory of having been sick, has already forgotten the hospital, cannot remember he has an IV portal in his arm.

(In fact as I was writing this he got out of bed and wandered in to where I am typing.

What are you doing I asked.

I need to go to the store for cigarettes.

Remember, you’ve stopped.

Why?

Because of the CAT scan. They found nodules and said you can’t smoke any more.

Oh, I forgot.

And with that he wandered back to bed).

I don’t know if being weakened physically will cause him to lose ground cognitively.

I do know that our relationship has changed, at least for now. I cannot make even the small demands I did ten days ago. I bring him his pills. I feed the dogs and care for them. I tempt him with snacks every few house because he will skip eating unless I remind him. I stand at the shower to make sure he keeps his arm dry. He has no interest in the world or the people in his life. He wants me nearby as his guide—each time the nurse asked him what year it was, he looked at me to give him the answer—but we have almost no conversation. And while I might leave him to go to the store or run a few errands, I cannot imagine leaving him overnight with a life list to follow. The life list is on hiatus.

I assume some of his strength will return. But this episode has exposed his fragility and vulnerability. Also how far he has drifted from the Ralph he used to be. Whether the decline is in the last week, whether it’s permanent, or whether I just didn’t notice before remains to be seen…

This Inattentive Alzheimer’s Spouse Gets Caught

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So hours after bragging about how beautifully I’ve handled Ralph lately, I naturally got my comeuppance.

Shortly after I posted my little self-congratulation, Ralph announced that he could not find his phone. Misplacing a phone is as common as morning coffee for most of us these days, why the find-your-phone app is essential as that morning coffee. But Ralph’s basic flip phone, which he has never been willing (able) to switch from, doesn’t have that app. So there was no find-your-phone button we could use. Instead we (I) dropped everything I had on my schedule to begin the search.

“Have you checked your car?” he asked every few minutes, and I dutifully looked there again. He had not been in my car for days, and I had seen him on the phone the night before but anxiety pushed him into one of his memory loops. He was sure he had placed the phone in my passenger door pocket although he had not been in my car since a visit to the dentist the week before.

As we searched I thought about how important Ralph’s cell phone has become as a safety net. Thanks to the cell phone Ralph and I each have a degree of independence we might not have. I can check on him regularly. And he can push one button and talk to me wherever either of us is. But my comfort level depending on the phone assumes I can trust he has one nearby and will pick up. What if he’d lost the phone while I was out of town or even at the grocery store? The idea of him being on his own and unreachable for days or hours, or even a few minutes frankly, is terrifying. (It might have be time to get to a land-line again). 

We started looking for the phone midmorning. At three in the afternoon I was at Verizon while Ralph waited at the farmstressed out. Fortunately he was  only semi-unreachable since our tractor man, soon to be farm caretaker, was nearby with his phone.

As it turns out, Ralph’s 3-G phone will be obsolete and unusable within a matter of months so getting a new phone was in the cards anyway. I considered switching him to some kind of relatively easy-to-use smart phone, but common sense—and the salesperson—prevailed. Ralph, who had enough difficulty operating his lost flip phone,  would resist and resent a change. The good news is that the updated flip phone I bought looks exactly like his old one, but unlike the old phone it will be connected to my phone in such a way that I’ll be able to locate it and by extension Ralph in an emergency. So the small snafua turned into a win-win scenario-except for the stress and anxiety that took a definite toll on both of us. The lesson I learned: I need to keep track of Ralph’s phone and make sure he has it on him whenever he leaves the house (although while I sit here writing,  I realize I didn’t check on him and his phone before I came up here).

Two days later an even smaller snafu handed me a second reminder about the importance of vigilance. We were invited by some friends for dinner. As we headed out the door, I went to the refrigerator for the bottle of Spanish white wine I planned take along to go with the paella being served.  Evidently Ralph had noticed the wine, which I’d purchased the previous afternoon, and partaken. I was annoyed and let him know it —not my finest moment.

After all, it  was my own fault. I wasn’t paying adequate attention. I should have known that he would see the bottle in the fridge and not remember he wasn’t to drink it. It’s not like this hasn’t happened before, but my mind was elsewhere and I let things slide.

As soon as I yelled at him, he apologized profusely and I felt terrible. I shut up and quickly changed the subject.(And really how trivial and stupid of me was it to be embarrassed about showing up with an opened bottle of wine, as if anyone cared.)  Three days later, he has no memory of the unpleasant moment but I do. 

I can’t help reacting as a wife when Ralph complicates my life. But these petty problems remind me Ralph is not just my husband but my responsibility.  And just because he seems content doesn’t mean I can lower my guard.

ps.The lost phone remains unfound although I imagine it will turn up eventually. I have marked the new one in bright colors to differentiate just in case.

Back FromWhat Felt Like One Brink to Face Another

As usual we balance on the teeter-totter of good news and bad.

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Ralph’s visit to Emory last week was a bit worrisome. The social worker noticed the same change in his communication that I’d been noticing. He was not exactly monosyllabic but offered much less information than usual. When I explained that he’d been in bed for a week, without his usual dosage of nicotine or caffeine, we agreed that it might be situational blip but that I should watch his lack of energy and engagement. It could be situational, but what worried me was that the temporary setback would set off a permanent slide. I was nervous. Ralph definitely seemed sluggish the next couple of day. I had to prod him to take his pills, to take his shower, to eat his lunch. But he has always been negatively affected by the kind of dreary weather were having and to my relief when the sun finally came out, his energy definitely ticked up.  I still had some niggling doubts because he seemed a bit foggy in the evenings, but then again we were still both a little stuffed up and coughing.

Then two days ago he shocked me by announcing. “I’m looking forward to Christmas with everyone in New Orleans. That should be fun.”

Ralph looking forward to travel? Ralph looking forward to anything? Wow. He was back to his old self, well not his old old self but at least his self of three weeks ago if not a touch more lively. I breathed a sigh of relief.

Of course, being back to his self of three weeks ago meant he was back to cigarettes and beer. And spending more time in his office away from his wife’s prying. And instead of sitting on the cold porch in the late afternoon, he began sitting in his truck where he could run the heat. I nagged him some, but mostly I turned a semi-blind eye. To be honest I didn’t have the energy to fight him.

(Except over the cigarette smell, which I had forgotten how much I hate but that’s another story.)

And last night we had the kind of crisis we’ve avoided for quite a while. He shambled into the house for dinner, stumbling against the wall and just short of incoherent. In other words drunk on lite beer. At least I think he was. I was worried that maybe it was something else, but no, it was beer overindulgence because once he ate he was more or less fine.

If he didn’t have the cognitive impairment, I’d…well he does have it.

So we talked calmly. I was stern and he contrite. He agreed again, to have no more than four beers a day. No beer at all unless I was there to keep count. So no more keeping beer outside the house, whether in the office or the truck. He agreed.

I reminded him this morning. Of course he didn’t remember last night, except his hand hurt, and that was enough to prove my point. Again he agreed. I drove to an appointment. He called to ask where his car keys were. I said I didn’t have them. He was sure I did. I drove home a bit later and found a new 12-case in his truck. He’d used the extra keys in the mudroom. But he was now chastened and suggested I go ahead and take the case of beer out of his car. He came to the house at four as we’d agreed. Everything is calm.

Sort of.  To watch him as carefully as he may need requires limiting myself in ways I frankly don’t want to. I feel a wave of resentment along with the standard guilt that I have been doing an inadequate job. I have already made one big change:

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I’m putting the life list I always make for him while I’m away in service everyday now. And the list itself is longer now, including more daily activities, and also including a check off for beers 1 thru 4.

We’ll see how long this lasts. He got home at 3:30 this afternoon. It’s 5:15 now and he’s on beer #4.