Tag Archives: MCI changes a spouse’s life

Money Talks….

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

According to a recent article in the New York Times: “As Cognition Slips, Financial Skills Are Often the First to Go.”  financial cognition is one of the first skills to go. According to Ralph: Money talks, bullshit walks.

When we first met, Ralph was something of a hippie entrepreneur. By the time he was thirty, he’d dropped the hippie part and considered himself a real estate entrepreneur—buying, renovating, managing and leveraging small apartment buildings–while I pursued my less than financially lucrative writing ambitions. Then his longtime bookkeeper quit suddenly and I had to take over the day-to-day bookkeeping. At the time I didn’t want to take on that responsibility, but in retrospect I am really glad I did. When I needed to liquidate the business two years ago, I knew the basics, like where the checking accounts were, but also the larger framework of how to run the business the way Ralph did. He remained the one who made the serious financial decisions, but I watched and learned.

And what I learned was to be obsessively careful. I used to tease him about the way he analyzed and re-analyzed every business decision, going over and over the worst case and best case scenarios, ‘running the numbers’ as he called it. So what struck me in reading the Times article was this line: “It may become more difficult for people to identify the risks in a particular investment, and they may focus too much on the benefits.” Ralph’s last three investments were frankly terrible.

Luckily those were his last investments. Unfortunately, they were his last investments because Ralph’s follow-through was also going. Ralph always took great pride in being “a closer.” So what I saw as his flagging interest in following through caught my eye as a problem sooner than his forgetfulness. I realize now that he probably no longer trusted his own judgment. He went through the motions, but he had checked out at least a year before his diagnosis. He sat in his office reading catalogs and magazines while letting his assistant and me run things. Fortunately, he’d done such a good job training us that we did fine for awhile.

We may have lost some money due to Ralph’s MCI, but I am kind of glad Ralph had that time to loosen his hold on the business. A grace period.

Because once we had the official diagnosis of Mild Cognitive Impairment, there was no pretending. And by the time I decided to sell the business, Ralph’s impairment was greater while his interest in anything financial had dropped to zero. The man who loved to spend days doing profit loss projections can no longer figure the tip on a restaurant tab.

The Theory of Alice–A Politically Incorrect Review Revised

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

After two back-to-back days of movie going last week, I got fired up to write a politically incorrect review. Something along the lines of:

The Theory of Everything, about brilliant but Lou Gehrig’s disease enfeebled Steven Hawking and his complicated marriage(s), is fairly standard, respectful bio fare but speaks to me about the nuances of living with a disabled spouse more than Still Alice’s Alzheimer’s stricken professor facing her deterioration with noble grit. Alice, like the earnest, follow-the-dots novel on which it’s based, struck me as an agenda film meant to pull heart-strings without making anyone too uncomfortable. All the chestnuts about Alzheimer’s —forgetting words, getting lost, not remembering names, faces, or recent conversations—get represented, but without much density or complexity. While Hawking came across as multi-dimensional, Alice, even in her worst moments, is always noble, essentially intelligent despite her impairment, and Julianne Moore beautiful even at her most faded. I hate the manipulation at the end when Alice’s daughter reads her a monologue and asks Alice what it means so we can hear Alice struggle to respond ‘love;’ hell, I couldn’t tell what that monologue was about. And of course I resented the spouse’s portrayal in both book and movie as a selfish jerk.

So those are the bare bones of the review I was writing in my head when I met my daughter for supper the other night. Just the two of us, a rare treat.

“I saw Alice,” she told me as soon as we were settled in with girl drinks.

“You did?” I asked genuinely surprised. I began to launch into all the things I thought were wrong with the movie. “Ugh, and that speech she gave.”

“I loved that speech.” She also loved the actress daughter who ends up moving back.

“But you wouldn’t move home to care for Dad, would you?”

“If I didn’t have a job and it was Manhattan I might,” she laughed. In fact, she and her husband are planning to move out of Atlanta in the next year, but she’s become indignant whenever I’ve raised the thorny issue of selling our farm when it becomes too much for Ralph and me. Now she added, “Really, I would love it if you and Dad moved wherever we end up. You could babysit.”

“And you could help with Dad.”

We laughed and proceeded to have our first in-depth discussion about Ralph’s condition. About whether Ralph counts as Early Onset Alzheimer’s given that my daughter noticed changes when he was barely sixty long before the MCI diagnosis; about how tense she gets around other people because she sees Ralph’s moments of self-consciousness and anxiety and how it breaks her heart; about how people who have met him in the last ten years, including her husband, don’t realize that he has changed in some essential ways; about what to expect down the road; about my frustrations; about her fear that she might inherit the Alzheimer’s gene (“but I would never have that test.”).

We were honest and respectful and loving. I left the restaurant a little elated, went home and told Ralph what a great time the girl and I had together. Also hugged him in pure exuberance. Moments of intimacy with my kids are hard-won and I will take them whenever and for whatever reason I can.

So as for Forget Alice, forget my griping in the first paragraph.

What a great movie, huh.

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.

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.

Appreciating the Common Cold

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

This will be short because I don’t have much time to write today. Ralph is sick in bed with a very bad cold and I am playing nurse—note, I said playing and nurse, not being or caregiver.

In the old days when Ralph was sick, I always complained, at least to myself, about what a baby he was. Now I find myself offering to make him toast and tea. I make pots of homemade chicken soup. I have skipped scheduled meetings and almost cancelled a trip Ralph and I both agree I should take with my son.

Yet I feel none of the resentment I usually feel around my never-ending sense of responsibility toward Ralph.

Why? I keep asking myself until I realize that it is much easier to deal with the fact of Ralph with a concrete, physical, medical ailment. Not that the brain changes connected to Alzheimer’s are not medical or the plaque build up in his brain is not physical. But for me there is a psychological or maybe I should say magical thinking difference:

What Ralph calls his fogginess is frustrating to manage or even face because it is hard to quantify. Maybe his namenda and donepezil make a difference, maybe they don’t. Maybe I sense him losing more memory lately and being slower on the uptake or maybe I’m looking at his every sentence too closely and reading too much into his slips. I don’t know and don’t always trust my guesses.

On the other hand, a stuffed nose is a stuffed nose and a fever of 102, while serious, can be measured going up or down. The efficacy of cold medicine is uncertain but plop plop fizz fizz what a relief a cold can be. After all, we both know he will recover from it—tomorrow or the next day his nose will stop running, his fever will drop, and physically at least he’ll be “better”. His memory? Not so much.

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.

Travel–My First Crisis as an MCI Spouse

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

One of the sticking points in our marriage has always been that I love to travel but Ralph doesn’t, unless it’s to go fishing. So I was incredibly excited last spring, just over a year ago, when a friend invited me to accompany her family on a cruise through Northern Europe. Two weeks all expenses paid! Even my airfare would be covered!

Aware this might be my last chance for an adventure, I was dying to go. Ralph had been given the neuropsychologist’s initial assessment of MCI by then and we had recently visited the Emory Memory Clinic for the first time. But except for repeating himself a lot, Ralph was pretty much the same self-sufficient guy he’d always been– working in the office every day, fishing with his pals, arguing about politics. I told myself he could certainly manage  without me. Still good wife that I considered myself, I told my friend that I couldn’t commit until I spoke to Ralph.

I brought up the trip with trepidation, not sure how he’d react. He might not enjoy travel himself, but he didn’t much like being left behind either.

“No question, you’ve got to go.” Ralph’s enthusiasm surprised me. “This is an offer you can’t refuse.”

He seemed more relaxed than I was  during the flurry of preparations. Over the next month I bought walking shoes, stocked the freezer with the frozen potpies Ralph loves, planned a long fishing weekend to keep him occupied at least part of the time while I was gone.

Then Ralph woke up one up one morning, five days before I was to fly to London, and announced angrily that if I went on this trip, I might as well not come back. I lashed back at him with resentment and plenty of anger of my own. How could he wait until the last minute? What would I tell my friend and her family? Why was he such a controlling bastard?

“It’s your decision,” he said before storming out of the house.

We headed to our shared office in separate cars. The cadre of supportive, well-meaning woman friends I called as I drove all agreed: Ralph was being ridiculous; he might have minor memory issues but he could function alone perfectly well.

I eventually called the Memory Clinic for professional back up; after all, I had heard our neurologist say that Ralph had ONLY MILD Cognitive Impairment.

Talk about a bucket of water in the face!  Both the nurse practitioner and social worker explained what I should have realized—capacity to function aside, Ralph’s fear had to be respected.

I went to him and apologized. He said if I really wanted to, I should go after  all. Then we talked with more honesty and intimacy than we’d shared for a long time. He acknowledged fears that his condition would suddenly get worse—“What if I get lost while walking in the woods by our house and you’re not here to find me?” “What if my mind just goes out all of a sudden?” It didn’t matter that neither scenario was likely; his anxiety was genuine and intense. And for this proud man to admit any fear was huge.

Which meant I had to admit my own fear: my own high anxiety about my new role as caretaker-spouse of a husband with memory loss. I had been in selfish denial about Ralph’s MCI while planning my trip, but part of me knew all along that going away for more than a couple of days would be a mistake. Once I said I wasn’t going, I was oddly relieved: What had I been thinking to plan such a trip?

My friend refused to let me feel guilty about cancelling. Her father refused to let me pay him back for the non-refundable tickets. The kindness of strangers is nothing compared to the kindness of friends.

As for the two weeks I didn’t travel to Europe, I have no regrets. In fact those two weeks were a gift because I ended up going with Ralph on that long fishing weekend I had organized for him, along with my daughter and her boyfriend, and while we were all together, they got engaged. Now if I’d missed that….