Closing Another Chapter

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Last week I finally made time to check the extent of damage to our hideaway in Apalachicola from Hurricane Michael back in October.

I’ve probably described “The Dollhouse” before, a small garage apartment on a large bay front lot with no house but a gazebo on the lawn and a sturdy fishing dock—so sturdy that it is one of the only docks in town still standing and useable. There’s no house because when Ralph bought the place, he decided he didn’t like the house so sold it for pennies, maybe $1000, to a buyer who transported the house ten miles down the road (I don’t know if it survived the hurricane and don’t have the heart to check). The lot itself had a high price tag when we bought it, against my wishes; he was adamant and in those days it was difficult to win an argument against him, but I now suspect Ralph’s cognitive abilities were already compromised or he would not have insisted on such a blatantly bad deal. Then again, it was 2007 when a lot of stupid investments were being made.

It was a terrible business decision but I grew to love the place. The stairway is long and steep, the rooms are tiny and there’s no central HVAC or Internet. The garage was built in the 1940s and we renovated by returning it as close to what it was originally as we could, complete with a red Formica kitchen counter. Everyone who has visited has fallen in love with the gemutlichkeit/fen shui. Ralph and I figured we’d end up spending more and more time there once we retired, him fishing, me becoming part of the artsy funky community.

I knew two trees fell on and through the roof in October because the contractor who agreed to handle repairs as soon as possible which was not going to be soon, and tarped the roof in the meantime, sent pictures. I kept putting off visiting, though, in part because I figured the locals had enough problems of their own and didn’t need a part resident gumming up the works, in part because I was afraid what I’d find, in part because I couldn’t find the free days. But last week, after a little problem since solved with Apalachicola sewage backing up onto the property, I realized I had to see things for myself.

I went without Ralph because he told me “I don’t think I feel like going.” Frankly, the idea of staying by myself for a night didn’t sound too bad.

And it wasn’t. The town seemed to be doing business pretty much as usual. There were signs of (re)construction everywhere. The shabby chic bed and breakfast where I stayed served late afternoon wine and cheese as well as breakfast. I met with my contractor, walked the property and loaded my car with paintings, linens, sentimentally important knickknacks and Ralph’s fishing journal. I walked around town sipping café con leche from my favorite coffee shop.

I also talked several times with a realtor I trust. She told me the property was worth a fraction of what we paid, but that if I could hold it another ten years, the value would probably rise.

I drove home admitting the reality that I already knew but hadn’t quite faced: The future we’d envisioned involving Apalachicola is not going to happen. Ralph and I are not going to be visiting, let alone retiring to Apalachicola. Once the apartment is livable, I will rent it full time to cover the taxes if nothing else.

I was filling pretty sad by the time I got home.

Ralph was on the porch smoking.

“How was New Orleans?”

“I was in Apalachicola.”

“Oh that’s right. I forgot,” he smiled.

When I explained the situation, he was not perturbed. He was not particularly interested at all. Basically he doesn’t care that he may never visit again. No, before I rent the apartment out I’m going to drag him down there for one farewell reunion visit with our fishing friends from Nashville.

And then I’m going to start discussing with him my plans for the farm, or rather my plans for our leaving it behind too.

Making Change in Dollars and Sense

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Today I sent Ralph on an errand. That’s right, I sent him off to perform a task without me there to oversee him. I gave him a twenty dollar bill and asked him to go to the gas station down the road, buy “something,” ie cigarettes, and bring me a five and 3 singles back with the change.

Asking Ralph to perform tasks is not something I do a lot obviously. He used to handle all the manual chores that required any skill. He did electrical, plumbing, carpentry, auto repair, you name it. He wouldn’t let me hang a picture because he didn’t think I could meet his critical standards. What he never did was run errands. He was not one to go out of his way on the way home from work to pick up milk, or a kid from school for that matter.

Now he is more than willing to do whatever I ask. Willing just not capable.

So my request was an experiment of sort. He still drives to the gas station daily for his cigarettes so getting there and back was not an issue. And willingness clearly was no problem; he offered to leave that minute. But remembering to bring me what I ask for…there we’ve had problems in the past. Even if I call him while he’s at the store or he calls me from the store to double check, he’s still likely to come home empty-handed. In the past he’s resisted taking written reminders but lately he’s become more dependent on his daily written life list.

So I wrote down a note, bring me change for this twenty.

He read the note. I reminded him I needed to end up with 8 dollars and he could keep the rest for his own use (I usually make sure he has about twenty dollars in his wallet at all times.) He looked with worry at the note again.

I took it back and wrote a new note. Bring me three 1$ bills and, one 5$ bill.

He read the note and nodded. I turned back to the stove as he put on his coat and started to the door. He stopped.

I can’t remember where I put the note or the twenty dollar bill.

He patted his jacket pockets. I checked his wallet. No note. I was about to write a new own when I saw a corner of the note poking up from the breast pocket of his shirt. I put note and cash in his wallet. He couldn’t buy his cigarettes without  seeing the note—well, unless he used his credit card, his usual payment method.

I sent him off with misgivings but fifteen minutes he was back. With 3 singles and a 5.He was casual as he handed over the bills, but I could sense he was feeling the same buzz of thrill and relief I was at a job well done.

Success is measured differently these days.

CHRISTMAS 2018: ALICE LESS IN CHARGE AND RALPH MORE ENGAGED (MAYBE)

 

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I admit I was sad not to have our traditional farm Christmas, mainly because I had no excuse to decorate the house with kitschy abandon (although a few, maybe 20, Santa Clauses did show up on shelves and mantles). But gathering with extended family in New Orleans proved much easier.

We stayed with our college age grandkids and our son in a rented duplex literally across the street from my daughter’s house, where she was in charge of festivities. Ralph and I both enjoyed ourselves, albeit separately and differently. While I was busy helping with preparations and messing around with five grandkids from almost two to almost 22, Ralph spent a lot of time smoking on the porch, either at my daughter’s house or the rental, while I could keep an eye him through my daughter’s front window. Therefore when he left the rental porch and headed down the street our first sunny afternoon, I was there to stop him.

“I’m just walking around the corner to buy cigarettes.”

“Not a good idea to go off in New Orleans by yourself.”

“I know the way there.”

He did know the way there: walk to the corner, take a right and keep straight two blocks until he got to the store. It was the way back, past those two blocks with corners that looked just like ours that be the problem. I sent my son to walk with him.

I sighed with relief and became more vigilant. I also made sure he was stocked with cigarettes. There were no more blips (well, except for a little one Christmas afternoon when we had to convince him that the store was closed).

As the holiday drew to a close, both my son and daughter commented that Ralph seemed much better than he had seemed at Thanksgiving. I had to admit I wasn’t sure I’d noticed.

It makes me nervous when anyone, but especially one of our kids, comments that Ralph seems better. No, I don’t get nervous; I get defensive.  Why do they think they can see something I’m missing?

So why did the kids see him as improved?

Well, for one thing they found him frighteningly disengaged at Thanksgiving. And they may be right. That holiday is a blur of houseguests, of cooking, cleaning, entertaining and babysitting while fighting off the remnants of congestion and cough. And given that Ralph was coming down with the cold that put him in bed for days once everyone left, he probably was more disengaged than I noticed–I do have a lingering image of Thanksgiving night, most of us gathered in a relaxed conversational circle in the living room and Ralph sitting alone just feet away in the television alcove bundled in outdoor wear staring at nothing.

Second, while I was focused on how much he slept and whether he drank too much beer at Christmas, they found him more engaged because around them he was. While all of us, Ralph in particular, could move easily back and forth across the narrow street between houses, our separate living space offered Ralph privacy both to nap whenever he wanted and to take the time he needed with his slow wake up rituals before walking over to my daughter’s house to offer everyone with some grandfatherly attention. Because he slept so much during the day, while the kids and grandkids were out exploring the neighborhood, in the evening he was rested enough to participate.

And third, by Christmas Ralph was back on his study meds, which he’d stopped taking a week of so before Thanksgiving due to scheduling issues. The study is on the value of ADHD drugs in treating apathy in those on the Alzheimer’s spectrum, and I didn’t think those little red pills were working, but now I wonder. Or maybe it was just the combination of good weather, good company, and an undemanding change of scenery. As we were packing up to leave, Ralph said how much he liked visiting New Orleans.

“Well, maybe you could start visiting more often with me.” I was thinking ahead to Mardi Gras when I plan to help grandbaby sit.

“I’d like that.” He nodded with what seemed like enthusiasm.

Now we’re home. He’s back in his mostly undemanding routine. When I brought up going back down to Nola, he looked at me askance.

“I don’t think so.”

“But you had such a good time at Christmas.”

“It was okay,” he shrugged. “But I have no interest in going again.”

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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