TWO DISTURBING ALZHEIMER’S SPOUSE DREAMS

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I don’t usually remember my dreams but in the last week I had two about Ralph.

Dream 1.

I am in a school building with Ralph When he heads to the boy’s bathroom, I can’t follow him. But he doesn’t come out, and he doesn’t come out. I decide I must have been pre-occupied and not noticed him come through the door. Or maybe in the dream I am pre-occupied, enjoying myself, and then I realize I have  I missed him coming out the door. I start to search for him, walking down various corridors but stopping along the way to have small happy adventures. I never find him and wonder how I’ll explain to people that I mislaid him. When I woke I felt unsettled, as if the dream needed to be finished. I felt the need to double check that Ralph was indeed in the bed, safely asleep.

Dream 2.

Ralph announces he has fallen in love with another woman and asks my permission to get a divorce. The woman and I talk. I ask if she is prepared to take care of Ralph if/when his condition worsens. She says yes. She seems perfectly nice and normal, but I find it odd that Ralph says this woman, whom I evidently know slightly, is his intellectual soul mate. I feel a little hurt since before we married or even dated  we were intellectual buddies.

My stronger reaction, though, is curiosity. I ask Ralph what he talks about to the woman, who wears a 1950s-style black dress and wide brimmed hat. After all,  he and I don’t have more than perfunctory conversations most of the time. Ralph tells me they talk about real estate, the subject that used to obsess him but that he now avoids discussing—somehow in the dream I think to myself about our awake life. We are in a room together, maybe a restaurant, where I begin to worry about the woman’s motives–is she after his money [that part of the dream probably comes from reading Anne Patchett’s The Dutch House in which a second wife cuts her husband’s kids out of their inheritance]. Suddenly I realize Ralph’s kids are protected by his will. Relieved, I decide to let the divorce happen. He and the woman are very grateful. I am glad to be making Ralph  happy and also happy that now I can move to a smaller house and live alone.

One dream of losing Ralph physically, one of losing him emotionally. Losing or chasing to lose. What these dreams reveal is both obvious and murky:  ambivalence, ambivalence, ambivalence.

Our New Best Alzheimer’s Buddies

 

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So the other we got together with a couple we met years ago and always liked although we saw each other mostly at parties thrown by mutual friends. Or at the grocery store—actually I have run into the couple surprising often at Publix, every six months or so. We always end up talking in the aisle for ages, promising to call to make a date that never happens.

We got together this time through another mutual friend who thought the couple might be interested in buying our farm. At her suggestion I called “Jo” and “Jordan” who invited me to stop by their house in town to talk. I had another meeting scheduled at 2 so I dropped by at one for a quick visit. Once I sat down, it became clear we had more than real estate to discuss.

One of them Jo has been having some memory and confusion issues. Their internist, (who happens to be my internist as well) recently sent them to a local psychologist who gave Jo the ten minute memory test, which Jo passed.  But Jo and Jordan both sense something is wrong. And they know, because I told them one day in the bread aisle, about Ralph’s diagnosis.

So for an hour they talked about the problems Jo has been having and asked me questions in an atmosphere of mutual trust. Before I rushed to my other appointment, we agreed they should come out to see our farm the next day (although it was clear they were not going to buy it). In the meantime I printed out research information and the phone numbers of resources.

The next afternoon Ralph and I spent several hours with Jo and Jordan. It was different from any other socializing we have done in years.  We all chatted a little. Than while Ralph took Jordan off to show off the farm, I spent time with Jo. Then we all spent time talking together, going deep and honest fast. We shared details and insights about our current situation. Ralph was articulate about what he feels and struggles with, as was Jo. Whether or not Jo’s cognitive problems will lead to a diagnosis similar to Ralph’s, they share similar difficulties and it was obviously they found describing their problems to each other easier than they have to outsider.

“Oh yeah, I get that.” was the mood of the afternoon.

So what made the afternoon so special, was that it was so relaxing. Ralph and Jo didn’t feel forced to be together, the way Ralph felt when he the support group (at my insistence), but it was obvious he and Jo could talk openly in a way Jo never would normally in a group. There was no anxiety about trying to keep up.  Instead there was laughter over the kind of memory jokes my friends and family would probably never make in their sensitivity to Ralph’s condition. But we could with another couple facing the same issues. God it felt good.

Of course, the bittersweet news is that we’re moving away soon, but meanwhile I envision spending quite a bit of time with our new best friends. And once we move, finding Alzheimer’s friends is going to be a priority, one I’ve not really considered until now.

Future Ready? Not Quite Where Alzheimer’s Is Concerned.

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I have not posted much recently because I’ve been caught up in a flurry of moving preparations (although the move is months away), arranging repairs and renovation at the new house, starting the process of getting rid of stuff at the old. And in that flurry I have probably not been paying as much detailed attention to Ralph as usual. But we just spent half an hour together in my car after dropping his car to be serviced. In that time we had this exact same conversation close to ten times, approximately every two to three minutes:

What else do we have to do today?

Dr. Ling at 1.

What time will the car ready for us to pick up?

They’ll call us when it’s ready.

Should I leave the dogs locked up?

Yes, because we have a doctor appointment.

 

I’m used to the repetition of course. But it seems to have become more intense lately. I casually asked him whether he’d noticed any changes in his memory.

No. Have you?

Yes, I said then caught myself so added to soften the blow,

But then again my memory is worse too.

In fact, it is worse and I worry frequently about a factoid I read early on—that Alzheimer’s caregivers are statistically more prone to develop Alzheimer’s than the general population.  Every time I lose my keys, cell phone, or someone’s first name I do panic a little. And to my dismay, those occasions are increasing.

But Ralph loved my answer.

Well, that’s not going to be good, he laughed. We’re going to be rambling around the house saying “Who Are You?” to each other.

Yep. I forced my own laugh, thinking of the changes I am making in our new house to make it both wheelchair accessible and generally easier for caregiving down the road. Ralph is not ready to think about that possibility in a real way, but I have to. Just writing that makes me realize why my anxiety level has been high and why I have been avoiding posting here—the act of moving brings our future into stark, unavoidable relief.

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.

Ralph’s Ready to Move: A Small Alzheimer’s Victory Worth Celebrating

 

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So Alice, are you excited about moving?” Ralph asked last night striding into the kitchen as I was dropping corn into a pot for dinner.

Yes, sure.” I said carefully keeping my eyes on the pot, not daring to ask him the same question back, afraid what he might answer. (Also, to tell the truth, my own eagerness to move is mixed with plenty of anxiety I don’t share with him about the practical details and emotional upheaval involved.)

Well, I think it’s going to be great. I’m over the farm. I’m ready for something new.

What? Did I hear him right? Going to be great? Over the farm? Something new? I listened as he went on to say how much he was looking forward to spending more time with BabyRalph and his big half-sister and looking forward to doing things in Nola.

Was this enthusiastic guy Ralph? My Ralph who greets every suggestion of an activity, whether dinner at a favorite or a visit with his oldest friends  or a call to his children, with resistance? Whose most positive response afterwards is usually “It was okay“?

Yep, that Ralph. He actually is showing a new energized interest. He is choosing to be happy not scared.

I admit I am patting myself on the back a little for handling this major change better than I thought I could. For waiting until the time was right, for slowly readying Ralph for the idea, for involving him in the decision-making even if I might have chosen differently, for spending time each day showing him pictures until he actually remembered and got the mental reality of the move locked in place.

I may be premature in my self-congratulations; so much might still go wrong, like Ralph getting there and being miserable. But I want to share this moment because none of us—carers and carees both— congratulate ourselves enough for all the hurdles we manage each day. I am/we are busy worrying, second guessing and struggling to maintain against the tide of Alzheimer’s, whether it is coming as a slow undertow or massive waves. But facing incapacity, managing meds, making a quick or deliberate decision, swallowing impatience, struggling with frustration, facing grief—it’s hard to remember these are efforts that deserve to be applauded.

So here’s to all we do right despite ourselves! clapping.jpg(And tomorrow when I am back on the dark side, annoyed and impatient, you can remind me what a happy Pollyanna I was today.)

HOUSE HUNTING WITH RALPH (WITH A LITTLE GUITAR STRUMMING ON THE SIDE)

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Ralph and I just spent an intense week in New Orleans: We spent working hours babysitting BabyRalph during the hiatus between summer day camp/day care ending and preschool beginning, and we were also house hunting. I use the word we,but obviously was doing the childcare and the house hunting.  Having Ralph along with me was a challenge on both counts.

1. Babysitting:

Usually, when I go off on babysitting or business travel, Ralph stays  home since he hates leaving his dogs and settled routine. I prepare an extended life list, call him constantly and arrange for “visitors” who  make sure he is eating and following his list.  But I took him along last week because: one, he’d had a precancerous growth surgically removed from his wrist the week before so I needed to clean and bandage his hand daily; and two, I wanted him to have a sense of involvement in the decision-making process of moving from the farm to  New Orleans. Not just a sense–his involvement mattered in practical terms as I realized the longer we were there. Needless to say, Ralph was challenged in New Orleans in ways he is not challenged by his daily routine at home.

We slept at an Airbnb a block from my daughter’s home, but Ralph spent most of his days either “reading” (i.e. napping) on my daughter’s couch and smoking on her back porch. Not unlike home, except he was “reading” on a couch in the living room, not tucked away in his bedroom, so BabyRalph and I were always aware of him and affected by both his presence or absence. BabyRalph would ask where “Bop” was going all the time and would try to follow him to the porch–where he could no longer play since it was given over to cigarette fumes–or try to rouse Bop from his couch stupor so they could play guitar together.

In fact, the two had some lovely moments making music together; a useful reminder to both Ralph and me that Ralph still can and should play his guitar on a regular basis, an activity to add to his daily list. But while Ralph is gentle and wants to be helpful, his cognitive limits and needs were more apparent than ever. I was caught between a curious, active 2 year old whom I need to keep an eye on at all times and an oblivious, inactive 72 year old whom I needed to keep an eye on at all times.  It is not that Ralph is irresponsible all the time, but I can’t rely on his judgment from moment to moment. I could not leave the two alone together for even a few minutes any more than I could leave BabyRalph alone with another two year old.

2. House Hunting:

When I was off BabyRalph duty, I took Big Ralph to open houses. It is important to note that he has completely accepted that we are moving.

I don’t do any of the things on the farm I used to like to do anyway,” he says with a certain calm acceptance that both gladdens and saddens me.

The house we move to in New Orleans will be the house where I die,” he says with less calm and even more poignancy.

But acceptance is not enthusiasm. If Ralph’s capacity for enthusiasm is extremely limited these days under the best of circumstances, leaving the home where he’s lived for over 20 years, really the only home he remembers well, is far from the best of circumstances. And looking at property for sale—once his favorite activity in the world and what he did for a living as a small time developer/renovator/manager—has become a tedious chore for him (no smoking for one thing).

I thought of not making him come along but besides wanting  him invested in the house-buying,  I wanted to get a sense of what, if anything, might spark some, well eagerness seems to strong a word but at least a smile.

I personally was looking for something that needed no renovation, was relatively close to BabyKnox, and offered walkability. I was thinking small, but, of course with a porch for Ralph and some kind of yard for the dogs. Oh, and an office space I could escape to. I was thinking cute bungalow. But not one house I picked based on my criteria brought anything like a smile to his face.

Then on a whim I dragged him along  to a house that was totally outside my comfort zone: both bigger, a two-story, and older than I wanted. We went to see it for fun because my agent had seen it already and said it was “Amazing,” and because my daughter wanted a peek inside.

It was pretty amazing but what was most amazing was that Ralph actually liked the house. He loved the yard and the garage and the workshop. I liked the loveliness of the architecture and the fact that though old, it seemed in better condition than any other house I had seen in the price range. Ralph said he could imagine living there. I wasn’t sure I could. It was so not what I’d been looking for.

The next day Ralph didn’t remember the house at all. So we drove by it again, twice, he liked it again both times. I did too, but I still wasn’t sure.

Ditto the next day.

And the next. Meanwhile I kept checking out other houses by myself,  but none compared. The yards were tiny. The layout, even in smaller houses, would have been too confusing for him. The prices as high or higher.

So we now have a signed contract on a house. If all goes according to plan, we will move next spring. I am more excited each day, planning small changes, plotting what furniture to take. This will be the nicest house Ralph and I have lived in.

As for Ralph, I still wouldn’t say he is enthusiastic but as he repeats daily, “It’s the one with the yard and the workshop, right? That should work fine.”

Yesterday…   As In The Movie And Ralph’s Life

 

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First of all, go see Danny Boyle’s movie YESTERDAY. I laughed and cried and had the best time I’ve had at a movie since, gosh, I was thirteen when my friend Dorothy and I got my mother to drive us four hours from Pennsylvania into NY City to see Albert Finney as TOM JONES ( the same weekend the Beetles were in NY City to begin a tour; after the movie, my mother took us for Chinese food at a restaurant where Dorothy and I may or may not have walked past George Harrison, but that’s another story).

I went to YESTERDAY with a friend who’d already been once but wanted to go again. When I came home I called and wrote everyone I could  to recommend the movie. Then I sat down to write about it here because, after all, the premise is all about memory.

In the movie, the Beatles and their music (like other random items we all take for granted) has never existed for most of the world’s population. Or put another way, most of the world’s population has forgotten the Beatles ever existed. So the link between memory and personal reality couldn’t be stronger:

In the film, all the people who don’t have the Beatles in their mental database don’t miss them. And yet. And yet, the loss of what they don’t know is palpable to those who do remember (including the audience). So when the songs are reintroduced to the unremembering world, even in a slightly adulterated, second hand form, the joy is glorious. Not unlike when I show Ralph pictures and videos of joyful moments he doesn’t remember otherwise. The difference is that in the movie, people get to keep hearing those songs in their heads once they’re reintroduced. For someone with Alzheimer’s, the memory doesn’t stick, has to be reintroduced every time.

But aside from all my possibly pretentious psycho-philosophizing, the movie is just plain fun. I wouldn’t mind seeing it again. My idea was to take Ralph to see it and then finish writing this post by discussing his reaction. Whether or not he followed the plot, I assumed he’d love the music, of which there is a gracious amount, and I hoped hearing the songs would possibly trigger memories for him of what he was doing when he heard Help or Let It Be.

So I scheduled “See movie Yesterday With Alice” into his daily list for Thursday afternoon at 3pm. By mid morning Thursday, Ralph was complaining of a stomachache.

It must have been something I ate…I don’t think I can go to a movie today…Can we re-schedule the movie for another day.”

I wasn’t surprised when he was miraculously better and sitting on the porch with his cigarettes and beer by four that afternoon.

Let’s go Saturday then,” I said.

What’s the movie about again?”

“The Beatles, and what if no one remembered they existed but one person.”

Definitely,” he said.  “It sounds great.”

Well, here it is Saturday. As he does every morning, Ralph asked me over our first cups of coffee whether anything special was planned today.

The movie about the Beatles,” I said.

Oh, do I have to?” he said. “It’s just I don’t like sitting in a chair at the theater for so long.”

I looked at this man, who sits four or five hours at a time in his porch chair and realized I was hanging on to an idea of Ralph as moviegoer that I had to give up. It was not boredom or muscle pain he feared but being trapped in a world he couldn’t follow. He no longer has the capacity for concentration and comprehension that we both used to take as for granted as we did the Beatles.

“No, of course you don’t have to go.” Not today or tomorrow. Movies have become part of Ralph’s yesterday.