The Case of the Missing Car Keys: A Clash of Memories

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It’s the unacknowledgement of a reality that is constantly hitting us, as spouses, in the face, but for which reasonable, constructive dialogue is either ineffective or impossible any more. Quite draining, and erodes the bond we knew and loved with our spouses.”–Jabberwalky08, responding to my last post, expresses the predicament of the spouse caregiver beautifully.

 

So Ralph’s car keys are missing. Actually he couldn’t find them the morning after his evening of too many beers, but I didn’t think too much about it when I wrote last because I assumed they’d show up. They haven’t

That first morning I’d already left the house when Ralph discovered he couldn’t find his keys. I told him where the extra set was and he seemed mollified. But that afternoon when he still had not found them, he was upset.

You don’t remember where you put them when you got them out of my car?” Ralph asked as I helped him look. His tone was level and very polite, as if he was trying to avoid embarrassing me.

But I didn’t get them out of your car.”

Ok, but if you had where would you put them?

I would hang them on the key hook with the other key.”

That doesn’t make sense since you’d want to hide themfrom me.”

But I didn’t want to hide them, because I didn’t get them out of the car.

I remember you getting them out of the car. You were afraid I’d drive inebriated.”

No, I had not reason to be afraid because you went straight to lie down. Anyway, I was holding raw chicken breasts when you came in the house. Don’t you remember?” Stupid question to ask, I know.

I remember you getting the keys.”

I didn’t get your keys.”

But if you did, where would you hide them.”

Are you getting bored and frustrated yet?

This conversation, or a longer version, was held and repeated in several variations every time we were together. Ralph always remained remarkably calm, probably because he didn’t remember asking or answering the same questions two minutes ago. I became increasingly annoyed. “Which one of us has memory issues?” I blurted out at one point.

I have learned over time that what is remembered by someone with cognitive impairment can be just as problematic as what is forgotten. But now we were on a new level of looping memory.  We’d become a microcosm of what pundits are so busy discussing about facts, alternative facts, news and fake news. I knew I had not been out to Ralph’s car, taken his keys and hidden them. But he knew I had.

Ralph can be very convincing when he believes something, and his certainty was stronger than mine. After all, I have the niggling awareness that there have been enough occasions when I have done something similar—hiding beer cans for instance on a daily basis. I didn’t take the keys this time, but I could have and might in the future.

So I began to question myself. Could I have done something with his keys and forgottenWas my memory going. 

NO, I really couldn’t have and didn’t. And NO, my memory is not less trustworthy than Ralph’s

BUT there was no reconciling my sense of reality and Ralph’s and no arguing to a comfortable conclusion.

It would have been a darkly depressing state of affairs except that in saying I’d taken his keys, Ralph was also acknowledging that he’d drunk too much–that the drinking caused the loss of the keys, whether by his hand or mine. That knowledge has made him more willing, at least for now, to follow my rules and schedule. Last night as he headed to the porch, I nagged him to make a check on his life list to account for the beer he was holding. He merely shrugged, but a minute later he came back inside.

Thanks for  working so hard to keep me alive.”

I was speechless. For a moment we were living in the same reality. Then, lulled into thinking we could chat, I mentioned that our older grandchildren were arriving on Thursday.

Why are they coming?”

“Christmas.”

“Is it Christmas? Oh so is everyone coming for Christmas?”

“No, we’re all going to New Orleans on Friday.”

“We are? Oh, I forgot.”

It has been twenty-four hours since Ralph has mentioned the missing keys; that’s good news but the bad news may be that he’s forgotten he lost them. And because we live on different planes of communication, I can’t bring myself to ask him.

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.

Physical Illness in Memoryland Part 2 Or How Sick Is Ralph Anyway?

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I’ve lost track how many days have passed since I had to stop writing a post because Ralph was heading off in his truck. I didn’t catch him but he was back in fifteen minutes. He had headed to his office for a pack of cigarettes. He smoked one, had a beer and went back to bed.

He  followed the same routine for the next six days: in bed most of the day until shortly before supper. Each afternoon he smoked one cigarette and has one beer and then ate a hearty meal before a second cigarette and back to bed. During the day I brought him turkey soup, glasses of water, cups of tea, and cold medicine. He coughed occasionally but not that much. He blew his nose when I reminded him it might be a good idea. When I asked him if he felt better or if the cold seemed to be going away, he considered before answering yes, he did feel better. But every day when I suggested it might be nice to take a hot shower or sit up a bit he said, “In a bit. I’m resting now.”

On Friday, concerned that maybe I was missing something, I called his doctor to see if he should start an antibiotic since his smoking might make him more vulnerable. I was told that his symptoms as I described them didn’t warrant antibiotics. Yesterday was rainy so I didn’t even suggest getting out of bed, hoping a little extra babying would get him over the hump.

And sure enough he slept through the night without a cough or sniffle (irksome since I’m still coughing myself awake). This morning I told him I was meeting a friend for a quick breakfast and running a couple of errands I put off yesterday.

“Are you sure you’re up to it?”

“Up to what? I’m just having breakfast and going to the drugstore and ATM.”

“I thought you were sick.”

“No, you’re the one who has been sick with a cold this week.”

“Oh right, I forgot.”

“So you’re getting over your cold.”

“Yea, I think I am.” He nodded. “I feel better.”

When I got home two hours later, he was still in bed. I suggested a shower. He thought about it.

“In a bit. I’m resting now.”

After he ate lunch, I again suggested he take a shower. “It’s a sunny, warm day and a little fresh air wouldn’t hurt,” I cajoled.

“In a bit. I’m resting now.”

The thing is. I don’t think he’s down to the last remnants of his cold. I also think that the drastic cut in his intake of nicotine, caffeine and beer is affecting his energy level; he’s probably in a kind of withdrawal, which is obviously a good thing in that maybe he won’t go back to as many cigarettes or beers a day, but meanwhile my instinct tells me that if we’re not careful this total non-activity could become the newest normal.

But what if I am misreading the situation. What if I am being cold and heartless. Fortunately he’s got an Emory appointment which means 1., he has to get out of bed and 2., I’ll find out if I’m wrong and he’s actually sick.

Still, this is another glimpse of the future when determining what Ralph’s capability—how hard to push him and when to let him be—will be increasingly difficult.

Quick Thanks to AlzAuthors.com

Today Alz.Authors added me to their community of authors who write about the many ways people experience and live along the Alzheimer’s continuum. I am not totally comfortable blowing my own horn but am honored to be included on their roster. Below is the blurb (and picture, yikes) they posted on their website. To read my complete essay, got to AlzAuthors.com.

 

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Physical Illness Strikes Memoryland

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The laryngitis I had a month ago morphed into a hacking cough and a lot of congestion. For the next miserable, rainy week or so I grocery shopped and attended meetings I’d committed to—mostly at night and at least an hour away in Atlanta—then crawled home and let HGTV put me to sleep.

Finally after I went to the doctor who gave me a prescription. But it took another ten days, plus a change in prescription before I started feeling better. Meanwhile I had no choice but to take to my bed. What part burnout might have played is food for another post, but I had to let Ralph to fend for himself.

And he fended fine. He was very concerned. VERY concerned, in a way he never would have been when he was cognitively sound, sound. He worried aloud, What would I do without my Alice to take care of me.

Ever ten minutes he came into the bedroom to ask me if I was okay and if I needed anything. Usually I was trying to sleep actually and wished he would just leave me alone, but his heart was in the right place. He even brought me tea and toast. He ate sandwiches and the chicken soup I had (brilliantly if I say so myself) decided to make the day before I started feeling really bad. For several nights he slept in another room to avoid contagion, which was frankly also a nice respite because I wasn’t wakened during the night by his talking in his sleep.

And then the Saturday before Thanksgiving, as family began to drive up, I started to feel like myself. Hurray.

…We will skip over most of the details of the nine-day Thanksgiving we just completed this morning. Let’s just say that seven adults (all either related or married and all good at bickering), one teenager and a coughing, sneezing two-year-old trapped in a house twenty minutes from restaurants and shopping is not the best plan for holiday cheer….

Which brings us to today, or actually to the day before yesterday when Ralph started sneezing and coughing. Although so many people crowded into the house was difficult for him, Ralph loved being Bop to BabyBop and turned out to be something of a toddler whisperer, able to get BabyBop to eat when no one else could. The problem is that BabyBop is never without his germs and likes to share his food and drink with those he loves, like his Bop.

Or maybe I’m just trying to deflect responsibility since I am probably the one who got Ralph sick.

Because he is now the one in bed. And now I am the one going into the bedroom every hour or so to check if he is okay or needs anything, and he is the one saying LET ME SLEEP. A few minutes ago I told him that now I understood how he felt two weeks ago, and we laughed together at the role reversal.

Actually, he doesn’t have a fever the way I did, isn’t coughing as much as he was a day ago, and isn’t congested. But he is tired and feels as if he has a cold. This is the first time he’s had a physical problem in all the years since his cognitive impairment was diagnosed. And my reaction is different than it would have been pre-diagnosis. I realize he can’t take care of a relatively mild cold himself. I have to be around to make sure he drinks liquids and eats something and takes decongestants in a way. He is like a sick seven year old. Sweet and helpless.

And for the first time I have had to tell my daughter I can’t help her out of a babysitting jam because I can’t leave Ralph.

It’s not a big deal in a way, not leaving my husband alone when he has a cold, but it feels like a harbinger of things to come….

Oh no, I hear Ralph’s truck starting up. I would bet he is heading to the store for cigarettes (which he has not been smoking for obvious reasons). I better go catch him.

LARYNGITIS– VERBAL AND MENTAL

CAN'T TALK

I have not written for several weeks. I have thought about posting of course. There have been plenty of incidents with Ralph to describe, trips to doctors, visits from friends, tractor crises*, funny conversations (i.e.: me: ”Sitting on the porch to smoke in the morning in your boxer shorts might not be a great idea.” Ralph: “If a car turns up the driveway I’ll see it and go in the house.” “But they’ll see you too.” “So what?” Indeed, so what?). . I would lie in bed in the morning thinking about a situation that I wanted to share, but when I sat down to write I would get distracted. Or with increasing frequency, I wouldn’t make it to my computer I wouldn’t make it to my computer at all.

Then I got a bad cold/flu complete with laryngitis. Of course that didn’t affect words (not) coming from my typing fingers only from my mouth, but it feels pretty apropos. Both a symptom and a metaphor for my condition and Ralph’s.

In Ralph’s case he has a version of mental laryngitis. There is no way he can get beyond the blockage. He cannot get from here to there mentally. So although I have told him 15 or 20 times in the space of a morning that x=x, he keeps repeating that x=y. Each time he says x=y, I correct him. Each time he says, Right, I forgot. And each time I become a little bit more impatient.

(Needless to say, this morning we have been having a x=x/x=y issue concerning our lack of heat in the house. Ralph keeps asking what made our heater go out and I keep reminding him that I actually turned it off on purpose. In fact, he is not wrong—the system is broken—but the complexity of the situation, that the system has sent our electric usage meter soaring and I turned it off until a technician can find the problem, overloads his memory systems. As I was writing this tech guy came and Ralph started to tell him that the heat was broken; I re-explained and have sent him to his office.)

But my impatience dissipates when I visualize Ralph with laryngitis, especially if I do so while I have it myself. I can feel what it is like to have something caught in whatever the passage leads from memory to thought, not unlike the words caught in the passage between my brain and my mouth (or my typing finger, let’s be honest) Laryngitis is isolating, but in an oddly dreamy way also escapist because it is so straightforward; you cannot make yourself speak without having a voice. So I watch Ralph sitting beside me yet slightly removed with new understanding. He has realized that certain passages are blocked and he can’t unblock them.

As for me and my laryngitis, I am hoarse but talking again. But I have also realized that I have some blockage too. I have found some memories of my life with Ralph now and in the past so difficult that I have silenced them and in doing so have silenced myself. The difference between Ralph and me is that I can, I hope and with some effort, chip away at my blockages, while Ralph may not have that option.

Alzheimer’s Leaves Caregiver Fishing For Memories Too

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Ralph started the Ritalin study through Emory last week and I’m waiting to see some spurt of energy. He still lies down to “rest my eyes” at 5:30, resting them so deeply that I have to work to rouse him at 6:30 to eat dinner, after which he has his cigarette and goes back to sleep between 7:30 and 8. So my guess is that he’s been given the placebo.

Which is actually okay with me. As I acknowledged when our practitioner first said Ralph might qualify for this study, I have mixed feelings. (The future good that participation may do for others is a given but not really part of my equation.) I do not want to deprive Ralph of the chance for a more normal life or any chance to enjoy life more, and it is possible according to the nurses and social workers that Ritalin really will create a new zest for life.

But what if he ends up with more energy and zest than I have? That would be a cruel irony, wouldn’t it?  Because my energy is certainly depleted. I am not sure how much I can get away blaming my mental and physical exhaustion on caregiving.  Laziness and fear of challenge play their parts in drying up, or avoiding, my creative ambitions. But 15 years–10 as daughter/caretaker segueing, with a year or so of overlap, into five as spouse/caretaker–is a long time in what has never been a natural role for  me.

No matter, my competitive nature has turned  this worry into a positive goad.  To avoid being left in the dust, I am now revving up my energy with a new diet, more regular exercise, and visits to my therapist, whom I stopped seeing shortly before Ralph’s diagnosis when our relationship and my own sense of self finally seemed healthy.

Which brings me to my second worry, what if Ralph on Ritalin reverts back to the Ralph my therapist has reminded me he used to be: autocratic, critical, competitive, jealous. He wasn’t that bad, I laughed, but then bad memories began to surface. I could go on and on with a list of the examples of his faults and bad behavior I’ve begun to remember, and I would except just now I was interrupted by a phone call that’s thrown me completely off course….

The caller, JG, was starting out as a real estate agent when he met Ralph, then in his entrepreneurial prime. The two hit it off. , Over the years, I would hear Ralph talking to JG on the phone, explaining how to analyze values and bottom lines, offering professional advice but also yaking about fishing, another passion they shared. JG was younger and we never socialized much. But he did bring his wife and kids out to the farm for several visits shortly before they moved to north Florida. His wife turned out to be lovely—we had immediate rapport. His son, who was six or seven on that first visit, was obsessed with tractors, so he was in heaven when Ralph took him on the riding mower. (I don’t remember if they played on the tractor too.). The next visit, the boy was old enough to ride the mower himself, with a lot of supervision.

JG still comes to Atlanta regularly for business. Since we closed our business and turned the one rental property we still own over to his management company, JG has known, in vague terms, that Ralph was having some kind of problem and no longer actively involved in decision making, but he has never asked for details and I didn’t offer. He hasn’t seen or talked to Ralph for ages. The last time I talked to JG was a few years ago about a business issue. We were friendly but careful with each other.

He called today over another small business matter,. When he asked how Ralph was, I told him Ralph’s memory was holding stable.

What’s wrong exactly. I never asked but is it Alzheimer’s.”

“On the continuum but still early stages,” I explained. “You might not even notice any change at first.”

So he still fishes?” “No.”

Oh, he can’t fish?” “No, he has no interest.”

No interest?”

JG’s shocked silence was deafening. Here was someone who only knows Ralph as a man  avid about the activities he loves. I took back what I’d said about JG noticing—he would definitely register the changes  I’ve begun to take for granted.

JG began asking the questions he’d never asked. WeI had a long, serious discussion.

I didn’t want to invade your privacy.” That made sense because I’d been vague about Ralph’s situation early on, not sure how much to share. (These days I share everything ad nauseum.)

It is hard to imagine Ralph unengaged. He was so interested and involved. He was …” I could tell how upset, really upset, he was. “He was like an uncle… …

I invited him visit, with his son who is now a 6’3” teenager but still loves to farm work. JG said he’s been waiting for the invitation and will make sure to come soon.

I hung up in a different state of mind from the one that set me writing this morning. I am feeling tender toward Ralph now, of course. And toward myself, realizing how tenuous my emotional memory of Ralph and who we were together, the good and the bad, has become.