Tag Archives: difficult decisions MCI/Early Alzheimer’s

My Mother’s Not Cognitively Impaired, Just Old

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

I spent yesterday in a rush of care-taking. Not for Ralph but for my mother. This morning while I was in Atlanta buying wine for my daughter’s wedding, the nursing home called to say my mother needed to go to a hospital emergency room because her Coumadin levels would not go down. So I rushed to the nursing home (almost an hour away), then followed the ambulance to the hospital, another forty-five more minute drive, where she was admitted to the ER.  At around 4:30, while they were running tests, I drove home to check on Ralph,  drop off the wine that was sitting in my hot car, and grab an apple since I missed lunch.

I got back to the ER in less than an hour, at 5:30 on the dot, but Mom was furious, sure I had been gone for hours.

Two hours later the doctor came by to say her levels were back to normal and her overall health looked good. So I followed another EMT vehicle back to the nursing home, stopping at Arby’s so I could pick up Mom’s favorite dinner before heading back to the farm where Ralph was already asleep.

It was a long day but throughout my mother was as alert and lively as she’s been in over a year. At 96, she is bedridden, can’t hear or see very well but has a memory more intact than Ralph’s. She does suffer bouts of confusion, seeing people who aren’t there in what I consider heightened daydreams.  I would daydream heavily too if I were as bored as she seems to be. At the ER, she was thrilled both by the attention she was receiving and all the emergency room activity going on in front her. Her major worry was  that I wasn’t home to make Ralph’s supper. So when we got the upbeat results I called him and handed her the phone so she could tell him the good news.

During the nine years my mother lived with us, she and Ralph developed more of a relationship than they’d had during the previous 24 years of my marriage during which Ralph sensed she never fully approved or accepted him. He was probably right. Still he was a good sport when my she moved in. He wasn’t thrilled at giving up our privacy (and neither was I) but I think he was a little proud of being the only one strong enough to get her up—she is not a small woman—when she fell as she did more and more frequently toward the end of her stay.

I decided last fall that she needed to go into a nursing facility, in part because she was requiring more care than we could offer at home even with full-time caregivers, but also because Ralph had been diagnosed by then and I wasn’t sure what he was going to need from me. (Of course, I didn’t mention that reason to Ralph or even fully articulate it to myself.) At first Ralph was all for the move but as it approached, he began to question my decision. It was as if he were beginning to identify with her. Still, in the end, after a particularly scary event involving a 911 call,  everyone in the family agreed that she had to be moved.

Ralph and my mother have not  seen each other since she entered the nursing home. And they won’t see each other as long as she’s there, in other words for the rest of her life. He does not need to smell the hallways and see the patients lolling sideways in wheel chairs, talking to themselves,  staring into space or grabbing at everyone who passes. He does not  need to peek into the half-lit rooms like the one where my mother lies dozing most of the day. His unspoken fears about his future are strong enough.

As Ralph puts it, “it’s too depressing.”

Still, he asks me daily if she seems happy, and I always answer yes, she does.

My Confidence in His Competence–The MCI Conundrum

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

I just got home from the feed store about twenty minutes ago. Last week, the woman who pasture-boards her horse with us told Ralph we were out of feed. Unfortunately she didn’t tell me until late yesterday afternoon. I have suggested that she contact me directly when she needs anything from now on. But I’m a little annoyed because she should have known not to trust Ralph with that kind of information—and I should have checked myself sooner

Yet, as I write I can hear the humming whir of Ralph’s John Deere, a strangely calming sound on a warm summer day in Georgia. You well may be wondering whether it is safe for Ralph to be on a huge tractor if he can’t remember simple conversations? The short answer is: at this point yes.

The long answer is that we are at a strange place in terms of Ralph and responsibility. And his work on the farm encapsulates the conundrum.

Ralph loves mowing and is still more capable than most people of any age at most physical chores—a good thing since we’re busy readying the farm for our daughter’s wedding here in early October. Ralph has mowed the fence lines and frontage and will need to mow them again, he has scraped our winding, unpaved driveway as well as the dirt floor of the barn where we’re holding the reception. He works about four hours every day, rarely starting before eleven after a long morning of coffee and time with the dog. When he stops in mid-afternoon, he’s dirty, hot and tired, but he’s also savoring the knowledge he is needed and useful, and—even more important to his sense of self—still competent at what he does.

To Ralph competence, has always been a primary virtue. He may no longer be able to function as a businessman, he may not be able to remember how to get to the dentist he’s gone to for twenty-five years, he may not be able to follow a movie plot, but he is competent out in our field on that tractor—a man in control of all his faculties (or at least the ones that matter to him these days).

On the other hand, I am always a little nervous. Not that he’s unable to do the work (well, a little that he’ll drive the mower into the pond) but that he’s forgotten what work needs doing. Sometimes when I tell him NOT to mow the front field, he gets so fixated on remembering there is something about that field that he ends up mowing it. He has mowed certain fields way more often than they need mowing. I have to remind him and push him but doing either too much can be counter-productive. It is less a memory issue than one of anxiety.

So everyday, instead of over-reminding I double-check his work.

I want Ralph to feel competent for as long as possible. In fact I will him to be competent. My worry is that I selfishly have him take on more responsibility than he should because I can’t ride the John Deere or fix the plumbing or cut the firewood. What if I miss the signals warning me of decreased capacity. What if something bad happens because I am not vigilant enough. But on the other hand, to deprive him of activities he can do and loves prematurely would be a huge mistake too. This is the teeter-totter we are riding together, weighing the rise and fall, hoping not to knock each other off.

Between MCI And Alzheimer’s–Treading In Place But For How Long

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

Funny how one sentence can pack such a wallop. The other day I received a flattering comment from Alzheimer’s Wife who writes an elegant blog about caring for her husband with advancing Alzheimer’s. I am pleased that she like my post of course. But all I can focus on and what I keep re-reading is the second half of her sentence, “and this really brings home my life about four or five years ago.”

Will I be living Alzheimer Wife’s far from easy life in four or five years? The scary thought I mostly try to avoid bubbles up. I have read her excellent, low-keyed but insightful blog about dealing with her husband’s advancing Alzheimer’s without quite connecting it to my life with Ralph.

I don’t want to worry about what is coming. I prefer the strange complacency of MCI Purgatory where Ralph and I carry on perfectly reasonable conversations (that we sometimes repeat word for word three or four times in less than an hour), and where Ralph functions responsibly within the parameters of his (increasingly restricted) routine. Where the doctors’ warnings about what lies down the road for Ralph don’t quite resonate as long as Ralph’s tests scores hold steady, even if holding steady means treading water with the help of Namenda and Donepezil.

In MCI Purgatory I can choose not to notice small, undefined changes: how after a burst of intense reading a few months ago, Ralph now barely looks at the pile of books beside his bed; how he no longer bothers to follow the thread of most television dramas, how his favorite activity has become sitting on the porch watching squirrels with his dog—well, to be honest porch sitting has always been one of Ralph’s favorite activities, but he used to sit there listening to talk radio gathering fodder to argue politics with me. The radio is still on but he doesn’t much listen, and we never argue because he agrees so easily with whatever I feel like pontificating about.

But Alzheimer’s Wife has forced me to think about the years to come, to wonder if I should be using this time better—working with more discipline on my writing, volunteering more actively in the community, travelling. I keep making those plans but have yet to follow through.

Mostly Ralph and I live in a kind of calm bubble of daily routine, many of those hours spent nearby but apart. I write down any activities or appointments he needs to complete on an erasable board. Then, while I take care of the loose ends of our business and avoid working on my third novel, he mows grass, does the chores we’ve set together, or sits on the porch.

The one ritual that defines us as a couple, that we still share almost exactly as we did thirty years ago or maybe with improvements, is morning coffee. When we first married, I didn’t drink coffee but made Ralph’s every morning because his first wife did (or he said she did). Eventually I started drinking it myself. Then once the kids were out of the house, Ralph and I started taking turns making it and bringing each other our first cup, then often our second. Morning coffee, Ralph is sharpest and most relaxed. We watch the birds through our uncurtained window, listen to NPR rest stories, talk. This when we discuss any issue I want Ralph to understand and remember, doctor’s appointments, financial decisions, anything about our kids, lately the preparations for my daughter’s upcoming wedding.

In four or five years will we still be able to share coffee? Alzheimer’s Wife can’t answer that question. No one can. But Ralph and I giving up morning coffee together is the Rubicon I dread crossing.

The Arsonist by Sue Miller: Early Alzheimer’s Realistically Portrayed

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

I read a lot of novels in the alternative universe where I write reviews for a publishing trade magazine. I try to read as objectively as possible to judge if the author’s language, characters and plot come together in a way that moves, challenges and/or entertains.

Once in a while a novel or story comes along that I can’t help connecting to on a more personal level, and that is definitely the case with Sue Miller’s new novel The Arsonist. The novel is about a small New England town where tensions between summer and year-round residents intensify when a series of suspicious house fires occur. The ostensible heroine is Frankie, a single woman in her forties returning home to stay with her parents at their summer place, and the novel largely revolves around her ambivalent romance with the local newspaper editor covering the fires.

But for me the central characters were the woman’s parents, the long-married Sylvia and Alfie. Though madly in love in the beginning of their relationship Sylvia has become increasingly disillusioned with Alfie, a self-important academic. Frankie has always adored her father and always been piqued by what she sees as Sylvia’s “only-slightly-veiled contempt, or disdain.” The reader is viewing Sylvia and Alfie through Frankie’s eyes, at least at first, and to Sylvia Alfie seems unchanged; but even early on my antennae went up—Sylvia’s protective yet resentful attitude to her husband and his “projects” seemed uncomfortably familiar.

And sure enough, it’s not long before Alfie gets lost driving home along long familiar roads and Sylvia has to admit, to herself at least, that Alfie is “failing, the thing they’d both been aware of in less critical moments, that they’d talked about, gingerly, over and over.” What makes the moment disturbing is not simply that Alfie has forgotten, but that he so quickly turns helpless and passively willing to let Sylvia take over.

I was hooked.

From here until I put the novel down, I found myself skimming through the descriptions of the fires, only marginally interested in the who-done-it mystery or the romantic moments between Frankie and her good-natured new beau. What I cared about with increasing anxiety was Alfie’s gradual but escalating loss of mental capacity and how Sylvia, a highly competent, self-aware woman still young enough to maintain her fully active life, reacted.

There is no sugarcoating or sentimentality here, and no easy solution. Without giving away more of the plot, I promise that Sue Miller captures exactly the reality of being the spouse (or child in Frankie’s case) of someone with Early Alzheimer’s. The guilt, the anger, the protectiveness, the moments of affection and the moments of furious impatience. I didn’t simply identify with Sylvia; I felt as if Miller had excavated my own psyche. Sylvia may be a fictional character, but she is me.

Memory Loss and Money Matters

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

Yesterday I met with our new financial planner—Ralph would never have accepted the idea of a financial planner before now— and I was so anxious about the meeting that I left my laptop at the coffee shop where I’d just had lunch. Fortunately the coffee shop found my computer, and our retirement account is earning exactly the return the planner promised.

Money is not a subject I find comfortable to discuss. I have always been the artsy/intuitive, some in my family might say ditsy spouse. Even after I started working part-time in Ralph’s business office, using QuickBooks to make deposits, pay the bills and balance the books, I maintained the persona of Earth Mother not Business Woman. My domain was feelings; Ralph’s was the bottom line and money matters. (One important exception: using the example of my mother who used her coverage for her health aides, I successfully pressed Ralph to purchase long-term care insurance four years ago. Thank God.)
Since Ralph’s diagnosis, I have been thrust into the weird position of trying to think the way Ralph used to think about business and money. Well, that is not quite accurate because as I sort out our finances, I sometimes find myself disagreeing with the decisions he made.

Especially those he made in the last few years as his memory began to slip from his grasp. He had slacked off, clinging to outdated business habits and letting his assistant make more and more decisions. When she moved away and I became more actively involved at Ralph’s office, I saw the reality: while I worked ten hours a day, he came in at 11am and left at 3pm with an hour for lunch; he sat in his office reading magazines while I handled all the day-to-day matters. And yes, I was resentful to put it mildly. Still we continued to pretend he was in charge. He didn’t want to believe otherwise and frankly neither did I.

Then came the diagnosis of MCI/Early Alzheimer’s and suddenly there was no pretending we could go on as we had. We agreed that our longtime accountant and lawyer needed to know about Ralph’s condition early on. We quickly updated our wills and made sure that powers of attorney, including responsibility for health decisions, were in place.

As for Ralph’s business, the retirement that we had talked about, yet avoided for so long was now mandatory. Since Ralph’s business for the last 35 years had been managing rental properties he owned, selling the business meant selling individual properties one at a time, no simple matter.

As we began the process of talking to real estate agents and taking offers, it quickly became clear that Ralph couldn’t keep straight which real estate agent was which, which property was under contract, how much we should be asking, or how much was being offered. To tell the agents or buyers our situation would place us at a disadvantage, so I have found myself covering for him and acting as a kind of pseudo-go-between.

What has evolved is a kind of charade. The agents may not know officially about Ralph’s condition, but they have to sense something is odd. Ralph chats with them jovially, but I’m the one who responds to the offers. Ralph and I discuss the sales as if he is equally involved in the decision-making, but actually he cannot remember the details long enough to analyze them, so I make decisions with the help of our accountant and lawyer.

I have learned to be a tough bargainer, which I hate. I have learned to say no, which is incredibly difficult. I have learned to play on others’ sympathy, which has not been so difficult. Aging feminist that I am, I kind of like playing the helpless female.
And I have learned to manage our money, sometimes in ways that Ralph would not have accepted. While I have involved our son, another artsy type but with Ralph’s hardheaded business sense, in some meetings, ultimately I have made the tough decisions on my own. I had three closings in the space of six weeks. A fourth property is under contract now. I turned over some of our property to another management company that rented our office in the city. I now have an office at home.

Every day or so, sometimes three or four times within an hour, Ralph asks how much money we have in the bank. I tell him. Then he asks if we’ve paid off our mortgage. I tell him yes. Then he asks if we have enough to live on. I tell him yes again. Ralph, who used to walk and talk calculations down to the smallest fraction, doesn’t want to know details. He’s always satisfied with my answers. He trusts me completely.

Before MCI, I used to chafe at his controlling nature and complained that he didn’t trust my judgment. But the truth is, I was glad to shirk financial responsibility off on him. Now I have it, and it is lonely and scary, like so much of what being Ralph’s wife has become.

Joining our Early Alzheimer’s Support Group

Support and Research, , , , , , ,

 A few posts back I wrote about my first one-on-one encounter with another spouse/caregiver. Reader “boomer98053” commented that I might consider a support group. I did more than consider, I joined one ASAP. The eight-week Early Alzheimer’s/Mild Cognitive Impairment support group I settled on was supposedly for Ralph and me, but frankly I was the one feeling the need, and what appealed to me about this group was that the caregivers met separately from those they care for.

The week before our first meeting, I soft-pedaled as I do many decisions about our lives lately, telling Ralph we were scheduled to attend a training program. I doubted he would agree to anything called a support group. Or maybe I was projecting my own ambivalence about admitting either of us was the kind of person who needed the support of strangers. In any case I expected him to protest the way he did for most of our marriage whenever I made a decision without checking with him first.

Instead, he gave only one half-hearted sigh before agreeing he’d try one session. I quickly notated his calendar but didn’t mention it again until the morning of the meeting. I have learned it’s a waste of energy to remind Ralph about activities and dates ahead of time.

No surprise that he had no memory of any meeting to attend when I did tell him. The surprise was that once he checked the calendar he was perfectly willing.

As we drove to the meeting Ralph asked, “What is this new test going to be about again? I am sick of tests.” I explained that he wasn’t going to have to take a test this time. He was just going to talk to other people with early memory loss.

Then he asked again and I explained again. And again. Anxiety definitely affects his memory (and mine).

But once we both admitted we were both anxious, we laughed and relaxed a little. He almost seemed enthusiastic.

Then, less than a block away from the parking lot, Clifton Road was blockaded. We had to turn around and follow the line of other cars trying to find a new route. Circling around to enter Clifton from the opposite direction, we got stopped again. We ended up far out of the way.

Given we were going to be late if we made it at all, I expected Ralph to suggest we head home. And I was feeling almost frustrated enough to agree.

Instead, his anxiety had morphed into concern about missing the meeting. When we arrived half an hour late, just like everyone else, he was as relieved as I was.

Before the groups divided, the facilitator asked all of us to introduce ourselves.

Glancing around the room, I vaguely recognized one of the women as someone I had known slightly years ago although I couldn’t remember how. I began to fantasize about the friendship we would build over our common care giving until I realized she was the impaired one in her family.

When it was Ralph’s turn to speak, he said simply “I have a memory problem and am taking a drug that helps.”

Wow. I cannot describe the rush of pride and love and respect I felt.

In the separate meeting of the care-giving spouses that followed, we re-introduced ourselves in more depth, describing the problems we each faced. There were about the same number of men and women, most of us in our sixties, a couple younger, several older. We, or rather our spouses, had all received relatively recent diagnoses. We were all in some degree of lingering shock.

At first as the others described their situations, Ralph didn’t seem as far along as many of the others. Although I found the group congenial, I began to wonder if I had joined us up too soon. But the more we talked the more I found myself enjoying the honesty. That others got impatient too was an enormous relief.

Ralph looked less than thrilled when we came back together after an hour. But not for the reason I expected—not because he thought he didn’t need to be there but because one woman hogged too much of the time. He told me with some pride that the social worker had complimented him on keeping a calendar and being forthright about his problem He said the rest of the group seemed perfectly normal.

He seemed downright enthusiastic about returning. In fact as soon as we got home he added all the meeting dates to come down on his calendar.

Alzheimer’s Radar?

Caregiver/Spouse Issues, , , , ,

I attend a reunion of my 20-something daughter’s childhood friends and their mothers. Although we never quite developed enduring independent friendships, I always liked the other mothers a lot and enjoy catching up on our lives over glasses of Chardonnay.

One of my favorite moms, Jane, begins to joke about how bad her memory is getting, how her kids tease her that she has Alzheimer’s because she’s always misplacing her keys and her coffee cup. When everyone laughs, I laugh along, or at least smile gamely.

But self-pitying resentment bubbles up–how can she make light of a situation that feels so heavy to me. Of course, my resentment is patently unfair. Who doesn’t hit 50 and start joking about Alzheimer’s?

I used to kid Ralph all the time about his growing forgetfulness. That is until the day my daughter took me aside to say I should stop the teasing because he was probably terrified. But for Ralph and me, as long as we joked it wasn’t real.  I look at Jane with new concern and sense genuine fear under her lightheartedness.

I don’t know Jane or the other women well enough to share that Ralph and I are coping with Alzheimer’s ourselves, but I am tempted.

Weeks later, I am still wondering if I should I have taken Jane aside and reached out to her.

Will We Walk the Alzheimer’s Walk?

Caregiver/Spouse Issues, , , , , , ,

Receiving an email reminder of the Alzheimer’s Association Walk to Stop Alzheimer’s coming up in a few months, set off a chain of reactions  I  jotted down as they were hitting my brain…bumpbumpbump…

1. I want to go on the walk. It will be a good thing to raise money for research of course, but what really appeals to me is the sense of belonging the walk implies. I imagine myself in a bright-colored t-shirt surrounded by smiling new friends.

2. I can’t sign up. Ralph will refuse to participate. If I bring it up he’ll say “just send money.” He walks every day with his dog or with me., but with other people? Other people with varying stages of Alzheimer’s: No way. He doesn’t want to be part of that world.

3. Actually, he’s not that stubborn.  I probably could convince him to participate. I could say his doctor says we should . No, I don’t have to manipulate him that way. If I’m honest and say that the walk is something I want to do, he’ll probably go along; he likes pleasing me these days.(a smile of affection  at that thought)

4. But if I do convince Ralph to walk, he won’t want to walk with other people. We would be a lonely twosome. I get support from knowing others in the same boat, while being around people with cognitive impairment only scares Ralph. And this difference is not just because he has the impairment; it also has to do with his personality versus mine. Not everything has to do with the impairment.

5. But Ralph was the extrovert for the first twenty years of our marriage. I used to resent how easily he met people. Our roles have reversed after all.

6. Maybe it’s not a great idea. Maybe I’m still too shy to walk with strangers. Maybe I’ll just send a check. Why push against my natural inclination and his current comfort zone.

7. But how can I not walk? We need to own this reality.

8. I am not sure why this walk seems so important. I have plenty of time to decide; three months can bring a lot of changes (or very few). But   this one small choice, like every small choice, crystallizes the back and forth in which I spend so much of my inner life these days.

9. And besides I keep imagining those new friends.

 

 

 

 

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….