Tag Archives: MCI changes a spouse’s life

Scattered,Bothered and Bewildered Am I–But Not a Nurturer by Nature

tire change

So yesterday, driving Ralph home from his shrink appointment in Atlanta an hour away, I hit a curb and flattened three tires. The day before I was writing an important email to an editor I wanted to impress and somehow hit send halfway through the first sentence. Sunday I was annoyed that all the guests arrived late to the brunch/shower I was co-hosting until I discovered the invitation said 11:30, not 11:00 as I assumed. (Well, my co-host got that one wrong too).

I tell these screw-ups on myself because I am aware that lately I have not been paying attention, that I am even more scattered.

Of course, I sometimes worry that I am “catching” Ralph’s Early Alzheimer’s, but more likely I am paying the cost of doing business as a caretaker without a caretaker personality.

The other night a friend from my adolescence called, and we had one of those wonderful rambling two-hour phone conversations that seldom happen anymore. Back when such calls involved sitting on the floor mindlessly twisting the phone cord while I chatted, she was the one everyone in our circle assumed would be the one with a big family. She was the warm, loving one. I was the one with edge.

But the other night she told me that dealing with her elderly parents who live across the country has taught her that she is not a nurturer after all. Fortunately, her more nurturing sister is taking most of the daily responsibility.

I have never thought of myself as the nurturing type either. As far back as I remember I was angsty and rebellious, even as a toddler. My younger siblings will attest that I was seldom a protective older sister. I avoided my family whenever possible. At thirteen I decided I wanted to be a Jewish nun to avoid marriage and children.

Yet here I am. I helped raise a step-son and two kids of my own. After my mother-in-law had her stroke, I was primary caregiver until her death two years later. After my mother had a psychological and physical breakdown, she moved in with me for the next nine years until her mid-nineties when she spent her last months in a nearby nursing home.

And now I am transitioning from Ralph’s wife to caregiver. The shift has been more gradual, luckily, than in many Alzheimer marriages, but it is always in process. And if Ralph is still in denial, I am less and less.

The patience required doesn’t come easily to me. I read other caregiver blogs and am amazed at the resilience, the selflessness, the willingness to give up so much.

I am not so willing. I have if anything thrown myself into more activities, begun more friendships. And although I do bite my tongue most of the time and don’t think Ralph notices too much, I am impatient.

And I am not as focused on Ralph’s needs as a nurturer would be. I don’t know what he is doing for hours each day. I encourage his painting, but I don’t push him to listen to music or talk about his past the way I know I should. I don’t get him to dance or bowl or join some activity to get him out and about. I don’t suggest we take walks together because I like walking with my women friends more.

And you know what, I am not a bad person. This is what I tell myself, anyway. I do what I can.

And I just need to calm down, take a breath, and put one foot in front of the other without tripping on my shoelace again…

Mama Bear Beats Out Wife or Caregiver This Week

mama bea

Last week, I wrote about my role as wife interacting with my role as caregiver. Since then I have been reminded that my role as mother, even to my adult children, still takes precedence.

When my kids were little, Ralph used to complain, as young fathers evidently often do, that I prioritized the kids ahead of our relationship. He was right, I definitely did. I was passionately, perhaps obsessively in love with my son and my daughter. And for better or worse, I put them first. I was no Ayelet Waldman, but then Ralph was no Michael Chabon.

Then the kids grew up, damn them, and went on their far-flung ways. (What was I thinking raising them to be adventurous and independent?) Ralph and I went into marriage counseling where we finally learned to get along. Like so many empty nesters we entered a kind of second honeymoon, growing closer, rekindling genuine affection while also, at least on my part, developing my own creative and social life. After Ralph’s MCI-Early Alzheimer’s diagnosis, the dynamic between us changed again. For the last few years, as I’ve explained probably too many times, I have been in the wife/caregiver conundrum, trying to maintain my interests while needing to focus more and more energy on Ralph.

Well, Ralph is not my focus today. Tomorrow I leave to stay with my daughter while she has a minor medical procedure. She didn’t want me there at first but needs me to babysit my granddaughter. Of course as soon as she asked, I dropped everything. I have prepared meals and a friend has offered to visit Ralph but otherwise, until I sat down just now to close the computer down, I was not even thinking about the fact that I was leaving him on his own.

And Ralph is fine about that. He wants me with our daughter as much as I want to be there, but he doesn’t want to be there himself. Not that he doesn’t care. He does, his high anxiety showing as a spike in forgetfulness and napping as well as an intense desire to stay in his comfort zone at home.

I know he’ll be fine, or okay at least.

But really my head and heart are not focused on him. For the last five days, even though the medical procedure is minor, I have reverted back to Mama Bear mode. For the moment at least Ralph is again a lesser priority in my life.

ON LABELS, ROLES AND MARRIAGE WITH ALZHEIMER’S

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There has been quite a bit of discussion lately on the blogosphere about how to label or not label people with dementia, specifically whether the word “sufferer” is verboten. I am not yet brave enough to discuss the issue in detail [although basically I’m all for not labeling, but I’m also for being free to label myself any way I want without feeling as if I’ve broken some rule], but it’s got me thinking a lot about labels in general. Not so much Ralph’s as my own.

And maybe LABEL is the wrong word. Maybe I mean ROLE.

Over the last couple of years, I have grown to think of myself more and more as Ralph’s “caregiver” and have heard myself talk (pontificate?) about what being a “Caretaker” entails. It’s such an easy catchall phrase. But now I am beginning to rethink just how I should describe myself.

During the last ten years of my mother’s life I was the primary “family caretaker” although there were always professional caretakers on hand to do the often literally dirty work. She was in my house and I was the one making decisions about her care. I was the one writing checks to those care professionals out of our joint account. I was the one informing my siblings when I sensed a problem. (I was also the one complaining about my siblings and being complained about—butt-calls and miss-directed emails kept us all more informed than we’d like on both counts.) I was the one sitting in the emergency room at least once a month toward the end.

She became less and less my mother than my responsibility, my duty.  Ironically, that was when my patience increased. The unresolved conflicts between us became irrelevant, dissolving like the thread doctors use to stitch up torn skin. At some point I stopped feeling like a daughter.

But as fraught as the mother-daughter relationship can be, the husband-wife relationship  is fraught in a whole different way–especially in a marriage with a man whose mental world is shrinking while mine is not.

Am I more wife or caregiver? As much as my marriage and relationship with Ralph have changed, despite my new sense of being the decider, I am not sure which way to answer that question.

Because he still annoys me the way only a husband can. The other day he was repeating one of his boastful but charming stories for the third or fourth time in half an hour. That immediate repetition I didn’t mind—it’s the Alzheimer’s speaking—but I have probably heard that story over a hundred times in our life together, since long before any memory loss, and frankly I’m sick of it.

And because I still use that bitchy tone I have always reserved especially for him on occasions of mild to extreme annoyance. Although the issues are smaller these days than in the past, I’ve noticed that my annoyance can be just as extreme. What’s changed is that Ralph doesn’t shout at me or storm out the way he used to. Instead with earnest sincerity, he asks me not to use that tone because it makes him feel bad. And then I have a complicated wifely reaction of guilt and resentment, based on our history and all the times we made each other feel bad.

On the other hand, I still feel the need to get his opinion and advice, on business decisions, on family matters, on what blouse to wear. Of course Ralph used to be extremely opinionated, always ready to give advice whether I was ready to receive it or not. Now he is easily swayed by what I think and really has no opinion on most matters, political, social, or sartorial.

So, yes, Ralph’s reactions to daily life and to me have changed since his diagnosis of Mild Cognitive Impairment/Early Alzheimer’s. But I am not thinking about  Ralph right now, but about me, however selfish that sounds. I am worrying how I may be changing.

I have that luxury because Ralph’s mental state is on a plateau; his memory and other symptoms have held steady for the last year. Therefore our marriage is also on a plateau, part purgatory and part second honeymoon, as we watch for signs of the deterioration everyone agrees will be coming sooner or later.

Meanwhile my emotions regarding Ralph, while tempered by my awareness of his diagnosis and prognosis, are pretty much the same as they have been since practically the day we met: a crazy quilt of guilt, contentment, resentment, protectiveness, impatience, loyalty, recalcitrance, affection, annoyance, love and occasional hate.

And my self-definition—creative independent woman, passive helpmate, head of household, housewife, caregiver, care giving wife, wife who cares for, wife who wants to escape to Tahiti—remains constantly in flux. I am the woman I’ve always been, but I’m someone else as well. That caregiver word is there, stuck in the middle, not yet in capital letters.

IMG_0130(This crazy quilt belonged to my grandmother. Note the centennial snippet.)

Money Talks….

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

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

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

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.