Tag Archives: MCI spouse

Alzheimer’s and The Downsizing Decision, So Far Deferred

daily life with MCI/Alzheimer's, , , , , , , , , , , ,

Driving to the recycling center the other night, I was listening to NPR when a story came on about a man with Early Alzheimer’s. Naturally my ears perked up.

Journalist Greg O’Brien has been chronicling his advancing Alzheimer’s in a series of reports called Inside Alzheimer’s. For those facing their own or a loved one’s Alzheimer’s, especially in the early stages, this series from NPR is worth checking out. A range of subjects are covered from telling the kids to hallucinations, to caregiver anger. Not all the topics may be relevant to your situation but you’re bound to find one that connects.

For me it was definitely the piece the other night. Greg and his wife have decided together that it is time to sell their home on Cape Cod and downsize before his condition deteriorates. Greg talked about packing up with the help of his kids and about the pleasure of finding mementos that vividly brought back to life the family’s past.

As Greg talked, I knew Ralph was sitting at home on the porch listening to NPR and I worried how the story would affect him, wondered if he would compare himself to Greg. Because frankly I was comparing them—the same way I compare Ralph to all of my on-line friends who write such articulate blogs about the early stages of Alzheimer’s.

You are all so strong, so wise, so likable in describing your struggles.

I admit, I can’t help what I know is an unfair thought process: wishing Ralph could be more like you and push himself to live life to the fullest. Of course, I know that I am being unfair. It is as if I am asking Ralph to get over this cognitive glitch, as if he it’s his choice, so he can start remembering and I don’t have to be so responsible.

Greg’s involvement in deciding to sell his home was really hit me because I really don’t know how I am going to get Ralph to leave our farm. And the time is approaching. I spent the morning looking at real estate. I am thinking of moving us, at least part-time to New Orleans where my daughter and her new family have relocated so we can share childcare with Ralphcare.

Ralph knows this, sort of. Sometimes he can analyze the pluses and minuses with helpful perception. Sometimes he thinks spending time down there is a great idea. Sometimes he looks at me as if this new idea, which he is sure I’m presenting for the first time, is nuts.

This possible move of ours is the biggest  financial, emotional and logistical decision I have had to make since Ralph was diagnosed with MCI/Early Alzheimer’s. It affects both of us.

[I would love to hear how those of you in similar situations have decided when a change in housing is necessary–whether it’s been a matter of downsizing, moving into special housing, or even living apart–and how you handled the decision-making.]

Personally, this is the kind of decision I used to let Ralph make. I would offer my advice, would influence his thinking; but for all my feminist posturing, I preferred the more passive role—that way when things went wrong I didn’t have to take the blame.

Well those days are over. Women taking responsibility for our lives is great in theory, and probably in practice–I will explore the definite advantages of feeling empowered in another post soon. Right now I can’t remember what they are. All I am feeling is that I have no choice but to take on the power of decision-making for the two of us, and after a lifetime of back-and-forth compromise (mostly my compromise that I often resented), holding that power can be scary and lonely.

A Summer Moment

daily life with MCI/Alzheimer's, , , , , ,

Here’s a poem for a change of pace. I feel a bit shy posting it here, but It does capture Ralph’s life at this stage of his cognitive impairment better than  a longer explanation perhaps. I have had some trouble with formatting so hope this looks ok….

A Summer Moment

Black birds part the clouds, a river

fast and noisy as Mountain Creek itself

casting its black shadow across the grass.

The noisy rush of wing and throat and beating air

filters through the branches of dogwood and oak.

They come and come and are gone in a rush.

The air goes still.

Out on the porch where you rock and drink beer

the radio talks to you about tornadoes in Texas

and politicians whose name you rarely remember.

The dogs sleep at your feet, their dog breath

thickened by the smoke from your cigarette,

your brain a black river of lost thoughts.

An Evening with Ralph and Bob

Alzheimer's and the Arts, , , , , , , , , , , ,

Dylan that is.

The other night Ralph and I went to what was at least the fourth Bob Dylan concert we have attended together over the years. And since it was probably the last Dylan concert we will attend together, it was bittersweet. It has often felt as if our shared love of Dylan has been the glue holding us together as a couple despite major differences on politics, religion, childrearing, and who forgot to roll up the car windows before it rained.

Dylan has been a bond with our kids and our extended family as well. Ralph took his oldest son to a concert when he was about eleven and took our daughter when she was sixteen; our middle boy got gypped, especially given that he wrote at least one high school English paper on Highway 61 and looks a lot like Dylan (as do I according to one family joke). My daughter has kept all the vinyl records from our complete pre-1985 Dylan collection, but we still have a framed Milton Glaser graphic that came inside one of the album covers hanging in our bathroom. We also have a limited edition Dylan self-portrait print that my Dylan look-alike son gave us one x-mas and a long shelf of books by and about Dylan that my sister, another Dylan fan, has given us one at a time over the years. My daughter chose Forever Young for the father-daughter dance at her wedding last October, but first she and Ralph went through every Dylan song to find the lyrics that worked best. I am not mentioning all the hours of Ralph singing Dylan or the Christmas get-togethers set to Dylan instead of carols.

Yes, we are just a teensy bit fanatical.

Yet Ralph was not enthusiastic about going to the Dylan concert. He doesn’t listen to music much any more, and he considered getting dressed and driving somewhere (or being driven by me) “too much trouble.” But I pointed out that getting out of the house one night a week is literally what his doctor has ordered in a written prescription—she now writes prescriptions for things like “art lessons” and “no more than three beers a day”—so Ralph reluctantly agreed.

Of course our daughter and her husband were also going to the concert—she wouldn’t marry a man who wasn’t a Dylan fan– so we met them and some of their friends for funky Mexican beforehand. Ralph enjoyed the meal and the company although time and place anxiety kicked in as it does whenever he is out of his regular at-home groove. Fortunately I had reserved parking only two blocks from the venue, but Ralph, who strolls with his dog on the farm for hours, complained the whole five minutes that “we have been walking forever.”

There was a lobby full of people to contend with and the visit to the restroom, which frankly filled me with anxiety because it would be so easy for Ralph to get confused and lost. But all went well and we sat down in our seats just as the lights dimmed.

And there was that small 73 year-old man strutting his stuff and singing, in pretty good voice too, that he is “an artist, I don’t look back.” At other Dylan concerts purist Ralph has not appreciated Dylan experimenting with his arrangements, but this time he didn’t seem to mind  that Dylan only sang four or five songs that Ralph actually recognized, perhaps because he doesn’t remember the originals that well himself. And he loved Dylan’s harmonica riffs and his new version of Tangled Up in Blue. The new Ralph is non-judgmental. He just flows with the experience.

On stage experience and in the audience experience. In the past, Ralph might have been furious at the man in the row in front of us drunkenly spilling liquor everywhere and shouting requests for Isis when he wasn’t making out with his girlfriend. This time Ralph just laughed the guy off as part of the fun, a new story he might tell.

When we joined up with my daughter and her friends for a nightcap afterwards, Ralph told the story he has told ten thousand times, about when he was supposed to meet Dylan. Actually he told the store that night about six times before I stopped counting. For a man who goes to bed by eight every night, he was full of energy. I had to drag him away shortly after midnight. Walking back to the car, we passed a jazz club. Stopping to listen at the door, Ralph announced, “We need to come back here soon and do this again.” I agreed wholeheartedly, thinking what a magical night we’d had, how lucky we had this bond of music and family to remember. Maybe:

Ralph has not mentioned Dylan, the concert, or our night out since.

Energy–His, Mine, Ours

Caregiver/Spouse Issues, , , , , , , , ,

It’s a little after noon on Sunday afternoon. Ralph is in the bedroom “resting.” He woke up at eight and we drank coffee until nine so his morning was not exactly demanding. But we are scheduled to meet friends at the movies at 2.

Resting at length in preparation for any out-of-the-ordinary activity has become the norm. He rests all morning the day he takes his art class. He rests most of the day before we go out for dinner. He does not attach his need to conserve his energy to his cognitive issues—well, he doesn’t attach any of his behavior to his cognitive issues, but I think the resting has  to do with controlling his anxiety more than a physical need.

And if it works, great. I certainly don’t fault him for needing to rest for whatever reason. But I am also aware that his need for rest affects my own in ways I don’t like exploring too carefully. Am I as energetic as I could be or am I using his lack of energy as an excuse to be less vigorous in my pursuits as well? When he goes to sleep at eight, I often stay up alone for hours wasting my time on bad television or online robot bridge, telling myself my brain is too taxed to read—it’s not. If I don’t work on revising my novel when he is resting, I tell myself I can’t concentrate because he is in the next room. It is so easy to follow his time line and energy line, to drop down a notch or two on the activity scale. It is a dangerous slope.

Partners in a long marriage either grow together or apart. Given our particular marriage’s ups and downs, it’s a pleasant surprise that Ralph’s Early Alzheimer’s has brought us together in many ways. But I need to be careful. His cognitive failings dominate much of our marriage; I need to be sure not to use him now to let things that matter slide, to avoid the sometimes difficult choice to live my life to its fullest.

Alice Takes a Short Quiz

Caregiver/Spouse Issues, daily life with MCI/Alzheimer's, , , , , , , , , ,

I used to love those self-help quizzes in magazines so now I have made up my own and taken in. I am not sure if I passed or not.

Questions:

Who did the following, A (Alice) or R(Ralph), in the last week?

  1. Who asked repeatedly where the other was going today?
  2. Who asked repeatedly what the other was doing all afternoon?
  3. Who went to an Alzheimer’s support group Friday?
  4. Who took the dog to the vet?
  5. Who could not find his/her cell phone for two hours?
  6. Who doesn’t answer the phone when called?
  7. Who answered the final Jeopardy question right?
  8. Who got in the car without putting the dog in the house yesterday?
  9. Who left the eggs boiling on the stove last night?
  10. Who noticed and turned off the stove last night?

Answers:

  1. R (Although I was only going to the gym) but also A (To remind Ralph he had a doctor appointment)
  2. A (Because I worry he just sits and smokes unless I push him to do a chore or activity); Not R (He has lost curiosity about my activities)
  3. A (Ralph refuses to go because he says one person always talks too much and he doesn’t get enough factual information)
  4. R (While I was at the support group actually; this was the first time he has taken responsibility for a chore in a while, and I was nervous about sending him alone. But he assured me that he knew the way and he did. The dog’s check up went without a hitch. The sense of normalcy was a good experience for Ralph and for me.)
  5. Well, I think that might be R and A, each on different days. (Actually I am not sure where mine is right now. Oops, there it is under an envelope on my desk.)
  6. R. (When I misplace my phone, I start calling it. When R misplaces his phone, he doesn’t notice. If I am out and checking on him, I get extremely nervous that he’s not answering. When I am the one home and he is not in the house and not answering the phone, I can get a little frantic. So far my worry has been needless, thank goodness.
  7. R (One advantage of having a husband with MCI/Early Alzheimer’s—he doesn’t lord it over me because he almost immediately forgets that he’s one-upped me)
  8. R (This was disturbing because, see 4., the dog is the area of responsibility where Ralph usually seems the most his old self; I took care of the dog without mentioning to Ralph who would have become very upset at his lapse)
  9. A (I put them on, left to check email and Ralph was the one who noticed and turned off the burner just as I was walking back into the room)
  10. R (See 9. Above.)

Answering my little quiz has been a good reminder to myself that the line between forgetfulness and Alzheimer’s related loss of memory is not always as clear. What is different is often more in the reaction. I fret while Ralph doesn’t know what he’s forgotten or that he’s forgotten. I think I may quiz myself more often to keep track of how we’re doing.

CHANCE ENCOUNTER/MUTUAL SUPPORT

Caregiver/Spouse Issues, , , , ,

So there I was in a store at the shopping center looking for a cheap picture frame when I ran into a woman I have half-known for years. Our daughters were in school together at some point in the distant past but never actually played together. Susan and I run into each other occasionally at the grocery store. We’re always cordial when we meet and joke because we seem to have the same shopping schedule, but we barely know each other. She grew up in this small town; I’m a relative newcomer. She tall, blonde and well-mannered. I’m short, frizzy haired and socially awkward.

So after we said our usual brief hellos and asked about each other’s child, I moved down the aisle. A moment later someone called my name. I turned around and it was Susan smiling but looking slightly nervous.

She explained that she had seen my name on a group email address from a local Alzheimer’s support group I attend sporadically. For a moment I was a little shocked and almost defensive—I admit I have not quite figured out how to be totally comfortable acknowledging Ralph’s condition except to close friends—but then came the flash of recognition: She saw my name on that list because she was on it too.

We stood in that aisle for I don’t know how long, sharing our stories, commiserating, advising, laughing, and occasionally holding back tears. For two women who barely knew each other, we felt a new but very real bond and a genuine affection, not unlike what many of us care-giving bloggers feel for each other.

But this was in person. And not at a meeting of a support group, which is in some ways a time out from day-to-day life in order to focus narrowly on my caregiver identity. I certainly appreciate the lovely people I have met there, but connecting to Susan was different, a reminder of how widespread Alzheimer’s is of course, but also something larger I am not sure I can articulate. About openness, and not only openness concerning Alzheimer’s. About hoe people are always deeper and more interesting than we assume. In making facile assumptions (in my case writing off Susan as belonging to a world where I didn’t fit), opportunities for real friendship may be missed.

Susan and I parted that day promising to get together again for lunch one day. I hope we do…

 

OOPS

Caregiver/Spouse Issues, , , , , , , ,

So I was about to write about a little snafu caused by Ralph’s memory lapse the other day but then I had my own cognitive issue.

We received a less than friendly email from a neighbor who has been complaining about various issues. In the past when he has made requests we have always complied. This time he was mad because a dumpster on our rental property was not emptied on New Years Day. The email was sent to our business email address and to Michael, the guy who manages the property since we “retired”. In the past we have always bent over backwards to make him happy—hiring people to police the grounds, adding an extra dumpster pick-up day, acquiescing to his zoning requests to put in a swimming pool and build a wall. This time I was admittedly annoyed at the snotty tone of his letter and emailed Michael that I now wished we hadn’t offered so much in the past. Unfortunately I was emailing from my phone, was slightly distracted, and hit “reply all” by mistake.

The neighbor was not amused.

And I can’t blame my screw up on cognitive impairment. Wait, maybe I can.

As followers may have noticed I haven’t written here for a few weeks. Since Ralph was  functioning more or less as usual, I took a short hiatus, taking care of the essentials but not thinking quite so much about our situation–a small case of burnout.  And I am not alone.  Supposedly caregivers of Alzheimer’s spouses have a higher rate of anxiety that could impair cognition. http://www.alz.org/care/alzheimers-dementia-caregiver-stress-burnout.asp

The hiatus is over and I am feeling calmer about my life, but don’t tell anyone. MCI and Early Alzheimer’s have given Ralph his built-in excuse for life’s big and little screw ups . I need my own.

Joy Still Happens

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Today we went on our annual Christmas tree hunt. We have cut down a tree on the farm almost every Christmas since we moved down here.

Ralph and I still remember the first time, 25 years ago. Piled into our old Suburban with our two kids, our friend Amelia and our two dogs, we drove all over the land we had just purchased. We didn’t know our way exactly and the roads were overgrown so we got stuck several times as well as a little lost, although Ralph wouldn’t admit it. He shot mistletoe out of some very tall trees—who knew that’s where you found mistletoe—and cut down two beautiful pines, one for our family and one for Amelia’s. Then we drank hot chocolate. It could not have been more greeting card perfect.

But of course life changes. Amelia moved out of our lives. The dogs died and were replaced by several generations of new pets. The kids grew up and although they have never have missed a Christmas yet, I worry every year that this season will be our last together as a family. Then there is the change in Ralph himself. He used to be the center of activity and now often prefers the sidelines, napping when the others go off on adventures.

And it has become harder to find a decent pine. There aren’t as many out there, either because we cut down the good ones or let them grow too large. For the last few years, Ralph and I have dragged along grandkids or nieces, city kids who try to be patient but quickly get bored traipsing through fields. But this year there is no one around but the two of us.

So I expected Ralph to tell me that looking for a tree would be “too much trouble”– his current catch phrase regarding so many activities we used to enjoy. Frankly, in this case I was secretly thinking he might be right, that a bought tree, with its perfect limbs, might be a pleasant change from our usual Charlie Brown monstrosities. But Ralph surprised me.

He was eager to go out tree hunting. And he remembered for two days straight that we were going to go today. He even made sure we gassed up the truck before we started. And off we went. Although our paths were mowed during the recent wedding preparations, the grasses are back up high and it was our normal bumpy ride, but at least there was no rain and it wasn’t too cold.

Soon, not far from our pond, we noticed a tree with potential, despite a flat side. I suggested we tag it with a pink ribbon, but Ralph insisted that he would remember where it was. After a lot more driving, also jumping out of the truck opening gates and stomping through high grasses, we found another tree, a tall one in a thicket of our old cow pasture. This one I made him tag. We spotted our third possibility in the fenced pasture directly behind the house. Ralph was happy to tag this one, and I took a picture to compare to our other choices.

By now Ralph had no clue where the other two choices were—or that we had seen other potential choices at all. As he followed my directions back across the pond, we joked about his memory in a way we don’t any more. And then we agreed, almost casually, that his condition was likely to get worse. Ralph’s potential future with Alzheimer’s has become the elephant we don’t always acknowledge taking up half the room, but in that moment of acceptance, it seemed less scary.

Because we were having too much fun. Both of us. There we were, two sixty-something-year-old cynics driving around in a beat up truck debating over the perfect height and shape of straggly pine trees as if our lives depended on making sure we didn’t end up with a bare spot in the branches. And it was great.

Lately I worry that we no longer connect as equals. It bothers me that Ralph is not interested in all the issues and concepts we used to discuss/argue about so energetically. Not only has he lost his appetite for current events but what is worse, he doesn’t want to challenge me about anything more important than whether he’s taken his pills. When he talks about the dog and the weather or repeats and repeats his anxiety about some mundane issue that has long been settled, I feel myself patronizing him. Not a good feeling. I have to remind myself who he has been in his life.

But this afternoon I didn’t have to make myself remember what I used to enjoy about being married to Ralph; I simply enjoyed being with him.

 

DRIVING AND PAYING

daily life with MCI/Alzheimer's, , , , , , , , , ,

A few days ago Ralph had an appointment at the same dentist’s office he has frequented for thirty years. When I first made the appointment, I asked if he wanted me to come along. He said I should just write out the directions (he doesn’t use GPS). A lot of me wanted to agree since I don’t much like giving up the time—an hour each way plus the visit itself.

Then reality set in. After confirming the appointment a couple of days ahead, I began to worry about sending Ralph off on his own. I imagined him circling Atlanta, lost on streets that have been familiar to him for years. Fortunately, if  sadly, Ralph decided he wanted me to drive him after all. The anxiety was too much for him.

So I drove him into town and read People Magazine for an hour in the waiting room. Then I paid for the visit with my credit card and drove us home.

Driving and paying are small acts.

But they epitomize just how much our lives have already altered since Ralph’s diagnosis of MCI. Ralph, the man who spent his career as a self-proclaimed entrepreneur, no longer is comfortable or even interested in handling money. Ralph, the fix anything guy who was refurbishing and selling old telephone trucks for a living when we first met, prefers not to drive at all. And impractical, absent-minded professor type Alice, who couldn’t balance my own checkbook or change a tire to save my life and whose kids still tease me about my nervous driving, has taken over all the practical issues in our life.

Driving and Paying: changes that not only  define our daily mundane routine but  serve as metaphors for the larger, psychological and spiritual landscape we have begun to inhabit . And it is scary to examine that landscape, not only for Ralph’s future but also my own. But in my next few postings, I will try–if the daily and mundane don’t get in the way as they usually do lately.

Mood Lasts Beyond Memory for Alzheimer’s Patients

Support and Research, , , , , , , , , , ,

“The fact that forgotten events can continue to exert a profound influence on a patient’s emotional life highlights the need for caregivers to avoid causing negative feelings and to try to induce positive feelings.”

This quote comes from a University of Iowa study on mood retention among Alzheimer’s patients, results I heard discussed a few days ago on NPR. The interviewer was thrilled with the information. And I know I should be too. After all, Ralph is still in a great mood ten days after we hosted the wedding because he knows he had a wonderful time even if  he can’t remember almost any of the details.

But what I actually thought as I listened to the earnestly enthusiastic young researcher was, “Oh great, now I have another reason to feel guilty.”

What I heard her telling me was that If feelings linger after the memory fades, I am “causing negative feelings” in Ralph more often than I want to admit. I see the way his face collapses when I am short with him after he asks me where I am going for the fifth time in half an hour. Or when I get annoyed that he has forgotten to take his pills or has not given me an important message from the electrician or has gone to bed before eight after spending the entire afternoon asleep on the couch. Less than a minute ago, he interrupted me as I was typing here at my desk with another question I had just answered, and I shouted down the stairs Not Now I’m Busy in a less than kind voice. Since Ralph’s diagnosis of MCI over a year ago, I have told myself not to feel bad about outbursts of impatience because he won’t remember. Evidently I was wrong: an essential non-cognitive part of him will remember.

Coincidentally, the blogger of “Not My Original Plan” –whom  I much admire for her realistic and committed optimism–writes in her most recent post about enjoying her mother’s lingering joy after the actual memory of an experience they have shared together fades.  I know I should follow her example and be glad that in some essential way his loss of memory has not robbed Ralph of his emotional life. And most of me is glad.

But to be honest, another considerable part of me liked thinking I had an escape hatch from responsibility:  I could let down my guard and be selfish or mean or emotionally lazy without it counting as long as Ralph wouldn’t remember.  That escape hatch is closed from now on, and I can’t help letting out a short sigh of “caregiver” fatigue.