Category Archives: Alzheimer caregiving

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.

AM I TOO TOUGH ON RALPH, OR NOT TOUGH ENOUGH?–THE MCI/ALZHEIMER’S BALANCING ACT

dirty dishesRalph has been skipping the last item on his daily lifelist: putting Lola in her kennel bed before he goes to bed at night.Obviously this is a small issue and I am capable of putting her to bed instead. But I don’t want to. For one thing, I like not having to do it myself, like being off duty all together for an hour or two before I go to bed. More important, I like the idea that Ralph contributes, however small the gesture, to the practicalities of our life together.

The thing is, maybe I need to face that Ralph is no longer capable of remembering to put the dog to bed at night. Maybe his cognitive energy is used up by seven pm and I should not nag him the way I do now (and yes, sometimes if he’s still awake reading in bed, I make him get out and see to Lola).  And this realization makes me re-considering what I should be expecting from Ralph.

Never mind big tasks like running the tractor—our tractor crisis two years ago will never reoccur because Ralph avoids messing with the tractor at all now; thank goodness I have found someone who not only runs it but also can maintain it.  As for medium tasks, like changing light bulbs, I don’t expect Ralph to carry them out any more although once in a while he’ll surprise me like the other day when he was able to attach the propane tank thing to the grill (although he couldn’t remember how to turn on the grill itself).

It’s the small tasks that I’ve been counting on for normalcy. But can I really? It is not that Ralph is unwilling. If anything, he is more willing to than he was in his prime when he downright refused to pitch in any time he found it inconvenient. Now if I ask him to take a turn making coffee, he agrees. If I ask him to help bring in groceries, he agrees. If I ask him to help clear the dishes he agrees. He is happy to help.

But, and it is a big BUT, his ability to follow through can be haphazard. He’ll agree but immediately forget and I’ll be annoyed. While counting to ten I debate in my head whether to nag him or let it pass. Or he’ll agree but do the job halfway. Or look at me with a forlorn expression. The other day when I asked him to unpack his small suitcase after a weekend trip to visit friends (a trip he enjoyed immensely although I dragged him there against his wishes), he gave me that look Unpack a suitcase? Put my socks in the sock drawer? I quickly backed off but he caught my look back and asked outright, “What, you don’t think I can unpack?” “Of course you can.” So he unpacked. But none of the clothes ended up where they belong.

Again, not a big deal. And not that he doesn’t ever follow through, not that he doesn’t sometimes surprise me with his competence, the same way he sometimes surprises me by remembering a conversation I assume he’s forgotten. But there are so many other examples of disappointment. So many times I get annoyed because he doesn’t follow through. So many times I wonder Should I trust him even to try a task he seems reluctant to try? Is he unwilling or unable? So many times I wonder Am I being too tough? Am I being too coddling?

Of course, I am being both and neither. I never seem to calibrate the right balance because there isn’t one. Although Ralph appears more capable and competent some days than others, I have to face that his brain is going through its own climate change, a melting away sometimes indecipherable but undeniable. 

 

 

 

Leaving Memories Behind Is Hard When Memory Itself Is In Short Supply

 

IMG_0125Ralph and I had one of our increasingly infrequent genuine conversations last night. He was sitting in the porch rocker as usual and I had come out to tell him that I had finally found the courage to warn Manuel that we’ll be moving and have to let him go in the next months. He has worked for us for over 20 years, first as a maintenance man at our apartment management business in Atlanta, then for ten years on the farm. Although we are not moving for awhile, I don’t want to wait until the last minute and leave him in the lurch. But letting him know we are going seems like a defining moment.

You know I’ve never lived anywhere in my life as long as we have out here, Ralph mused as I sat with him. This is going to be a life changing move.

Yes it is, I agreed and meant it.

It will be hard to give up this view. He gestured at the trees, the pasture, the pond. A leafy green and blue postcard picture of rural life.

Yes it willI agreed and meant it.

The truth is that lately I have been feeling like an observer as I go through the motions of handling the various details of our life. Not only watching over Ralph, stepping in to do actual care-giving as necessary—lately for instance, I’ve noticed his worrisome new tendency to skip showering and changing clothes, an issue I’ll explore more at some other time—but also as I go about my own life roaming real estate sites on the internet for a house to buy, going through closets to start winnowing out belongings we don’t need to move with us , focusing hard on what’s left of our business to be as financially ready to move as possible. Is that the same woman who just accepted an invitation to a party of new friends. Should she/I be bothering under the circumstances? But I do attend the party and enjoy my friends with if anything new intensity. because the idea of moving feels slightly unreal. Unreal, it occurs to me,  the same way Ralph’s diagnosis felt to me in the beginning. (I remember we were together in car on some trip, him at the wheel of course as he always used to be, and we began joking about a future when I would have to drive him. Was I at all aware how soon that day would come?)

Sitting on the porch with Ralph at sunset it was hard to imagine leaving. Were we really going to upend our current stability, static yet shaky as it may be?

Of course, Ralph said interrupting my thoughts, when I think about the farm these days I’m mostly remembering stuff I don’t do anymore. Duck hunting, raising cattle.

True. I agreed.

So I went into the house and got my phone.

What’s this? Ralph asked as I hit play on the video of him singing Alouette with BabyRalph.

What you get in exchange for giving up the view, I said.

Of course he doesn’t remember the conversation or the video this morning, but that’s okay. I was reminding myself at least as much as him.

 

 

Ralph–A Change of Perspective

Ralph and I just spent almost a week in New Orleans together babysitting while my daughter and son-in-law were away. With the change of scenery came a change of perspective.

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Here on the farm, life plods along. We get up in the morning and drink our first cups of coffee together and then we go about our days.  I have various deadlines, meetings, and activities at home and around town that keep me active so I’m not necessarily paying attention to how Ralph is filling or not filling his time. Of course I check with him regularly to make sure he is following his life list and of course he calls me repeatedly—whether over the phone or in person from the bedroom to the kitchen or over the phone from the bedroom to the kitchen—to ask whatever question has lodged in his brain for the day. And yes I am increasingly involved in getting him to do small activities (Did you take a shower? is one of my favorite nags and is about to go on the life list) and driving him to doctor appointments. But I don’t yet have to think about him minute to minute.

In New Orleans, we were much more in each other’s faces. While BabyRalph was in pre-pre-school, Ralph and I were alone in a house with an open floor plan where neither of us had space to escape to. Ralph wasn’t tucked away in an office or the bedroom. Ralph actually found the stairs to the bedroom too steep to climb more than absolutely necessary, a fact I have to note as I look for a house for us. He was either on the living room couch “reading” (mostly with his eyes closed) or on the back porch smoking. I was sitting in the kitchen trying to concentrate at my computer as he asked me repeated questions when he wasn’t sleeping.

And then there was the smoking. At home, although it drives me crazy that I can’t sit on my front porch anymore, I can almost ignore his smoking. In New Orleans I was responsible for a two-year-old who cried to be with his Bop. If I said, “Bop is outside,” BabyRalph said, “I want to go outside with Bop.” Of course I couldn’t let him outside with Ralph, or to play in his own backyard where the smoke from Ralph’s cigarettes hung paralyzed in the damp heat.  And each time Ralph came back inside, he had to, or at least had to be nagged to de-cigaretize (i.e., wash his hands, etc.,) before he could be around BabyRalph.

And he did love to be around BabyRalph. In the late afternoon for a few hours, Ralph and BabyRalph were inseparable. While they played, and that is what they did-play—I was free to clean up the house and get dinner ready. Ralph was fully engaged with BabyRalph in a way his own children never experienced him.  Of course, we are all more playful and relaxed with our grandchildren than we were with our kids. But there is definitely added-value in Ralph and BabyRalph’s case. Ralph was energized by BabyRalph because they share sense of presentness. BabyRalph has very little past to remember, while Ralph has very little memory of a lot of past.  And neither thinks about the future.

But I do. And what I have realized is that the biggest reason to move to New Orleans is not that we need to downsize or get and give family support but that Ralph needs to interact regularly with BabyRalph, oops now ToddlerRalph, as much as possible because those interactions bring him to life in a way nothing else does.