Tag Archives: professional help MCI/Alzheimer’s

Alzheimer’s Friendship

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Last week I had lunch with a new friend.

A month or so earlier I received an email from E responding to a post. She mentioned that we once met at a support group meeting run by the Emory Brain Center. I didn’t recognize E’s name so wasn’t sure who she was; because of the distance involved, I attend the support group infrequently at best and haven’t been back for ages.

But as soon as I saw E in person, I remembered her. I remembered sitting across the conference table from an attractive woman whose name I didn’t catch and thinking  she is really angry—angry and exhausted—and what’s more, she’s willing to admit it! She had recently convinced her husband to downsize their home, only to realize in the selling, packing and moving that her husband was more incapacitated than she’d realized. Scrunched down in my seat, listening to E talk so honestly, I recognized that I was not facing my own complicated mix of anger, stress and protectiveness toward Ralph. E’s directness and her honesty were a truly liberating epiphany.

Now here we were over a year later, sitting in a café catching up, and as E said, it was “like looking in a mirror.” Our husbands had different careers but in many ways we shared similar lives before they were diagnosed with Mild Cognitive Impairment within months of each other and began seeing the same neurologist at the Emory Brain Center. Now both men are enrolled in the same Merck study I have written about . They both are devoted to their dog. And E and I are both…. Well, we are that same complicated mix of stress and protectiveness.

As E and I sat and talked over our salads last week One of us would begin a sentence and the other would be able it finish it. We didn’t have to sugarcoat, we didn’t have to explain. The words poured out. Being with E was so relaxing.

We lingered and lingered and then we went back to E’s house and talked some more. I drove away almost giddy with excitement, the way I felt at ten or eighteen when I met a new friend.

When Ralph was first diagnosed, one of the vows I made to myself was that I was going to maintain my life, that I would keep my friendships. And I have. In fact I have a larger circle of friends and more active social life than I used to. I have worked at building a network, professional writer friends, volunteer organization friends, political friends, literary friends, movie going friends, fun and conversation friends, family friends.

And online friends through the Memoryland community—and it feels to me like a community—along with other caregiver/caregivee blog communities.

Now I have an actual Alzheimer’s friend.

Diaries and Dementia

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I want to pass on a link sent to me by my friend Caregivee, who has become my friend and conscience:

Caregivee sent me information about a new British study, “Carers’ diaries in dementia: Is there a role in clinical practice?”

I cannot verify the validity of this scientific study, which compared information recorded by 78 caregivers in daily diaries to what information caregivers gave in retrospect, but I was particularly struck by one conclusion:

“Our findings suggest that there may be a potential use of carers’ diaries in the assessment of dementia, in that they may identify more problems compared to relying solely on the retrospective account of patients and carers in clinic. More research using carers’ diaries in dementia covering longer period than a week may be required to ascertain other benefits.”

This study seems to suggest that by assembling the details from the diaries of many caregivers’ daily experiences–those small problems and/or solutions  that we forget about once they’ve passed, those fleeting reactions, those moments of clarity–health professionals may find ways to help caregivers improve caregiving and make the experience better for caregivees. We can use all the help we can get.

Although I may write here about my anecdotal experiences with some regularity, I have never been good about keep an actual diary. Perhaps I should start.

(But no promises that I can keep it up.)

Cognitive Testing-No News IS Good News

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Annual Cognitive Testing Update—No News Is Good News

We went for what has been a semi-annual appointment at the Emory Brain Center yesterday and the news is a sigh of relief:

No change in Ralph’s memory from a year ago (ie still “awful” according to N.P. Stephanie, who was smiling because awful is much better than “getting more awful”)

Executive function holding steady

Problem solving holding steady

Mood, if anything, improved

Apathy and low energy, which N.P. Stephanie addressed by lowering the dose of Lexapro. If he doesn’t not appear more anxious, we may cut it out all together (although I suggested that I might require his portion)

Ralph allowed to drive his tractor but not drive his car alone except to the convenience store three miles down our own road

Alice allowed to leave Ralph home alone for several nights at a time as long as there are friends and Alice phone calls to check on his meds and meals

 

Actually the big change was that N.P. Stephanie suggested that, barring a problem arising, we skip our usual six-month visit and wait to return next July.

Money on the Mind

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Sex and Money. The two topics that generate curiosity but can be pretty uncomfortable to discuss in general, and in regard to Alzheimer’s especially. I admit I am not ready to talk about sex, but money? I’m not sure, but because I’m in the middle of doing taxes, money is on my mind.

How much do we have? Enough. We are lucky. (Around the time Ralph was diagnosed he decided to “retire” from his business managing rental property, much of which we owned. We—meaning I–sold most but not all of the property to create a nest egg while we live day to day off the reduced income from the rental property we still own.)

How much do we need?Frankly our needs are much less on a daily basis. We seldom eat out and we are not buying “stuff” any more. Our medical costs, including Ralph’s medicines for most of the year, are pretty much taken care of by Medicare and our supplemental insurance. Lately I have shelled out for some costly business expenses, emergency building repairs, that have eaten into our income and that’s been a little scary—a hint of how things could change on a dime.

What are the money issues to come?  Housing and medical care. I have written before about the value of long term care insurance. We fortunately purchased it before Ralph’s diagnosis. I am hoping that if/when Ralph’s condition requires outside care, the insurance will kick in. But I worry that the glut of baby-boomer like us may bankrupt the long-care insurance companies before I need help so I am storing away funds just in case.                                                                                                        And then there is housing. Despite Ralph’s current conviction that he will never leave, at some point the farm is not going to be viable, and I will have to decide when, not to mention where we go from here. Will we be able to sell or rent out the farm for enough to afford our next living situation(s)? I don’t know but frankly I am not ready to think about myself yet.

How well am I making financial decisions, alone, concerning our future?  The truth is that I tend to go for easy decisions. And there are decisions—about whether to spend money on a given repair, how to keep our savings safe without losing ground, how to plan for our future needs. Ralph used to discuss these topics endlessly and we still discuss them, but he doesn’t remember from conversation to conversation what we last decided. I try to think what Ralph would do, but then I also remember that I did not always agree with what Ralph did when he was in charge. (I resent the money we are still shelling out to support bad decisions Ralph made about ten years ago—around when his cognitive loss probably began.)                                                                                                                                                        The real answer here is that at my accountant’s suggestion, I turned to a fee-based financial planner who advises me holistically and is available whenever I call with a question on the smallest issue. In some ways that financial relationship is more intimate than any other.

Post Script:

Before I posted this I had to run an errand. On the way home I stopped at Starbucks where man in line behind me was acting a bit confused in a way I recognized; when his wife explained that he had Alzheimer’s, I said so did mine. We began talking like long-lost friends (we use the same doctor and support system at Emory and are at similar points in the progression). One of the things she discussed the unmanageable cost of  sending her husband to a day program while she was at her job.                                                                      When I got home  I found a response to my earlier post about driving and Alzheimer’s: A woman, who doesn’t drive herself, has realized her husband can no longer driver due to Alzheimer’s. How is she going to solve that situation? Public transportation? Taxis? Uber?       I am suddenly struck anew by the financial realities that Alzheimer’s poses for so many and by the need for our support systems to come to grips with the needs presented. I realize I need to contact our local Alzheimer’s Association to see what services are offered and to volunteer to solve the problem of gaps between needs and financial cost—not where I expected writing about money to take me but it has…..

Driving and Alzheimer’s

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Memo to myself when I look back in years hence:

So six months ago our PA Stephanie asked Ralph how much driving he did alone. And he told her: the convenience store five minutes down the road; the Spanish grocery ten minutes away where our handyman likes Ralph to drive him to cash his checks; and Ralph’s therapist in Atlanta.

Since his diagnosis that weekly trip to the therapist has been Ralph’s big expression of independence and competence. He has his route down pat. He stops at the post office and checks to check our box; he takes a load of garbage to the dumpster at our old office; he picks up lunch at Burger King; he visits his therapist; he drives home.

Stephanie took notes, then warned us both to keep an eye on Ralph’s driving. Not so much his skill set but his sense of direction. She explained that a new detour can really be confusing for a driver with cognitive impairment and that the anxiety can made the driver too confused to find his way back on track.

When she suggested I start driving him to Atlanta, at least occasionally to make sure it was safe, Ralph and I immediately took umbrage…Ralph because driving is part of his sense of his identity as a competent man, me because I didn’t look forward to giving up a whole day every week to drive him back and forth. But the next week I made some excuse to ride with him into town—he was not about to accept that I needed to drive him—to make sure I was not just being selfish. As I reported to Stephanie on our next visit, Ralph seemed fine. In fact, he seemed to be a better driver, more cautious and careful.

Jump ahead to this past weekend. We drove together to the small Florida fishing town where Ralph was meeting his long-time fishing buddy.

Although I wasn’t comfortable enough with him driving five and half hours that I didn’t come along, I was pretty comfortable with him as driver since Ralph knows the way like the back of his hand. So on the way down I was happily drinking my coffee and relaxing beside him as passenger. Then I looked down to read a text, and when I looked up I realized Ralph had missed the turn. A major turn from one big highway to the next. A well marked turn that is hard to miss. We went an exit or two and turned around. I was a little tense and probably showed it more than I should have. Ralph was more than a little tense, but as I told him repeatedly in the next few hours, these things happen.

We got to Florida. Ralph calmed down and actually enjoyed himself more than either of us expected, thanks to a fishing buddy who is amazingly understanding about Ralph’s conversational loops.

Today we drove home. Ralph insisted that he wanted to drive. I was in the passenger but on alert when my phone rang. I looked down to find it, and when I looked up Ralph had missed the turn we needed to take. The turn he has taken hundreds of times. I stayed calmer this time, brushed the mistake off, said we didn’t need to turn back, that this way might actually be a short cut. But he was truly rattled. For the rest of the trip we had to discuss road numbers and I had to reassure him we were on the correct road.

Twice in four days may be a sign. Next week, I am driving with Ralph to Atlanta.

Alzheimer’s, Baby Boomers and Ralph’s Python Theory

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Until recently Ralph has always been a man passionate about theories. He would grab an idea, explore it to death and then eagerly explain it to everyone he knew.

He stopped believing some (socialism) and lost interest in others (glucosamine), but there were plenty (what it means to be “cool”) he never stopped expounding.

The Python Theory was among the theories he told me back when we first met in our twenties and never tired of explaining for decades.

According to the Python Theory, the Baby Boomer generation is so large that its influence moves society the way a swallowed egg moves through the body of the python. I assumed he picked up the term from something he read, but when I went online, the only reference I found was a 2008 article in the N.Y. Times stating a very different Python Theory of Inflation.

Of course, Ralph is a Baby Boomer—as am I. Whether or not Ralph came up with this baby boomer Python Theory metaphor on his own, in his version, he always considered himself (and by extension me) a cutting edge Baby Boomer/python egg.  A trendsetter for other baby boomers. And it’s true—in his music, in his politics, in his lifestyle choices and life occurrences, he has usually been slightly ahead of the curve.

So when he first got the diagnosis of Mild Cognitive Impairment, he laughed with sardonic, ironic pride that once again he was leading the Baby Boomer egg through the Python’s body.

And he was right. According to the recent article “As Baby Boomers Age, Alzheimer’s Rates Will Soar” by Dennis Thompson on the WebMd site,  Ralph is on the cutting edge.

The article is a bit terrifying in terms of both numbers and costs.

For instance

….More than 28 million baby boomers will develop Alzheimer’s disease during the course of their lifetimes, the researchers estimated.

By 2050, all baby boomers will be older than 85 and half of those still alive will suffer from Alzheimer’s disease, said lead author Lisa Alecxih, senior vice president of The Lewin Group and director of the Lewin Center for Aging and Disability Policy.

That’s up from an estimated 1.2 percent prevalence of Alzheimer’s among boomers in 2020, when most boomers will be in their 60s and early 70s….

…In 2020, the projected Medicare costs of caring for baby boomers with Alzheimer’s in the community will be about 2 percent of total Medicare spending, amounting to nearly $12 billion in 2014 dollars, the researchers estimated.

But by 2040, when the baby-boom generation is between 76 and 94 years old, projected Medicare costs increase to more than 24 percent of total Medicare spending, or about $328 billion in 2014 dollars, the new analysis said…

The article goes on to recommend more funding for research and more involvement by Baby Boomers, quoting Keith Fargo, director of scientific programs and outreach for the Alzheimer’s Association:

“The folks in this baby-boom generation are really the ones we need to step up to the plate and participate in some of the large Alzheimer’s prevention studies that are happening now,” he said. “Even people who don’t yet have any cognitive [mental] decline can help in this fight, by participating in those prevention studies.”

I think Fargo’s talking about me. I need to be an egg too.

P.S.  While writing the above, I asked Ralph to define his Python Theory. He couldn’t remember it. I jogged his memory. Then he described the visual of the egg and the snake perfectly but said, laughing, that he had no idea why he once thought it was important.

The Ever Changing New Normal

Eighteen months ago I was sitting in a six-week support group I had recently joined for caregivers when a new member walked in late, sat down and burst into tears in. She was a young woman in her late forties with a child in college and another in high school. Her husband was a former economics professor no longer able to teach due to his Early Onset Alzheimer’s. While she struggled to maintain her high pressure banking career to support their family, he spent his days in his home office playing chess on the computer and supposedly organizing his files. She tearfully described what a mess the office had become. She said he was depressed and angry and she was not sure how to go on.

At the time I was full of pity and secret relief. Her husband seemed so much further along the Alzheimer’s path than Ralph. Interestingly enough, her husband was the one person Ralph genuinely liked in the care-getters group which met at the same time as our care-givers group.  Ralph complained continually about having to listen to people drone on in his group, but when givers and getters came together for a luncheon when the six weeks series ended, he made a point of going up to the former professor to shake his hand and wish him well before we left.

Flash forward to the present. On my way to the grocery store this afternoon after a morning of office work, I realized that Ralph was not at home in his usual spot on the porch or out in the field mowing, but at his barn office/painting studio where he keeps a few files, his fishing equipment, and his art supplies. Ralph has always been a talented painter and always said that once he retired he would take it up more seriously. But despite my nagging, he has not lifted a paintbrush.

Still I became briefly excited.  Now that  the weather has turned cold, sitting on the porch smoking might be less appealing, so maybe Ralph was going to buckle down and begin to paint again after all.

But no. Ralph was sitting in his messy office, smoking a cigarette  with his dog at his feet.  When I walked in and asked what he was doing, he  said he was organizing his files.

Mourning Ralph’s Memory Loss As Well As My Mother

A friend called to offer condolences yesterday concerning my mother’s death. Having cared for her mother for several years, she reminded me that people who have not been through the experience don’t realize the amount of energy expended. Then she added, “At least you will have new energy now that you are done being a caregiver.”

Not quite. As I explained to my friend, my caregiving has just begun.

Just the day before her call Ralph and I had gone to the Memory Center at Emory for his six-month check up. Although it did feel a bit odd heading out only two days after my mother’s death, these appointments are like gold and I was not about to re-schedule.

It was a rough visit. Although Ralph did not have to take the big battery of tests this time, our NP Stephanie did one brief test, giving him a name and address that he was to remember. A few minutes later he had no clue what she had told him to remember. She offered a clue that might have tipped him off that the last name was his, but it evidently didn’t help since he made a wild guess.

This small memory failure felt more demoralizing than all the previous results we have received over the last 18 months. It was so stark: no retrieval was possible. The box where he’d stored the memory was simple empty and he knew it.

Also upsetting, although a matter of stating the obvious, was Stephanie’s warning about driving. While Stephanie reiterated that Ralph’s motor skills and problem solving are still fine, she said he should limit driving alone because she’s had “dozens” of patients at his level of cognitive ability who became dangerously disoriented when something on a usual route changed; confusion combined with anxiety caused them to drive off course, sometimes for hundreds of miles. “We don’t want to lose you,” she said gently. The truth is that I already do the driving when we’re going anywhere together these days including his last two fishing trips to Florida—actually, the time before last he drove, took a wrong term and got us lost before I used my phone GPS; I drove us down last time. We hadn’t talked about why I’m the driver though and now it was out there on the table. Stephanie agreed he could still drive himself to Atlanta for his weekly therapy appointment, but the writing is on the wall. And Ralph could read it perfectly well. He looked beaten down even as he smiled in jovial agreement.

Then there was the discussion of activities and depression. Ralph’s lack of activity worries her. She has increased his dose of anti-depressant and he reluctantly agreed to sign up for an art class and to go out with me one night a week. This was major: although Ralph, who has some genuine talent, always said he was looking forward to painting in earnest once he had some time, he has not picked up a pencil or brush for two years. I have nagged him about classes of course, but he has refused. I’m glad he has finally agreed, but his meekness was disconcerting. I know that my own emotions are on edge as I deal with my mother’s death, but I could tell that Ralph was processing Stephanie’s words differently than he has in past meetings.

As soon as we were back in the car, he turned to me and asked, “How long do you think I have?”

To live with a modicum of dignity and awareness was the unspoken second half of the question.I answered the only way I could.  “I don’t know.”

Then I drove him home and dropped him off before heading to the funeral home to pick up my mother’s ashes.

Long Term Health Insurance

I usually write personal stories here, leaving the science and practicalities surrounding memory loss to more qualified sources like the Alzheimer’s Association website. But this morning I gave the following advice to a friend who suggested I share it here. If you are reading this blog, you or someone close to you has probably been diagnosed with memory loss and may not qualify for long term insurance, but for the rest of you, especially caregivers, I have three words:  LONG TERM INSURANCE.

It isn’t cheap and the costs and benefits vary according to your situation. But it is easy to research on the government’s long term care site. For balance read the less than enthusiastic report in Consumer’s Report and then visit AARP’s longterm care calculator site. There are several sites that compare rates of providers. I am not saying BUY, but at least look into the possibility.

I will always be grateful to my mother for setting an example before it was too late for Ralph and me to consider long term insurance for our uncertain future.

She purchased long term insurance after my father’s death when she was over 70. Fifteen remarkably independent years later, she fell into a depression and stopped eating. Although we’d spent my childhood, adolescence and young-to-middle adulthood not much liking each other, age mellowed us both into polite if slightly stiff cordiality by the time I flew down to stay with her in the retirement condo Ralph had helped my father purchase years earlier in Key West. Key West, where I’ve had some of the best times of my life including my honeymoon, lost all its pleasant associations during the miserable two weeks that followed. Finally the visiting nurse gave my mother two choices: one, continue starving herself with the understanding that I would not be able to stay as long as it took for her to die; or two, fly back with me to Georgia and get medical care.

We flew to Georgia the next day. For the next nine years, until weakening health required her move into the nursing home where she resides now, my mother lived in the mother-in-law suite fortunately installed in our basement already.

And it was okay, not great exactly, not what my father would have called “a bowl of cherries.” Sure there were crises (like when she called 9-1-1 the night I neglected to go down to say goodnight after getting home from a movie) and the family issues that always arise among near and far adult children when a parent is failing. But what would have been a completely untenable situation, emotionally and practically, worked out only because that long term insurance. offered a financial safety net.

Purchased so late in my mother’s life, the insurance had payment limits and an end-point, which she reached about three years ago. But for seven years Genworth promptly paid about half the salaries of the excellent full-time caregivers we hired. Social security and an annuity paid most of the rest. Her savings held more or less steady—a good thing since her nursing home is not cheap and those savings are coming in handy.

Three years ago when Ralph started getting those notices that he would soon be eligible for Medicare, I suggested we re-examine our insurance situation. Since both of us have always been self-employed, we’ve always kept our cost down by carrying a very high deductible. After all, as Ralph pointed out, we didn’t need more insurance because we were both extremely healthy.

But so was my mother as I pointed out.

We called AARP who recommended Genworth, which happened to be the provider that was working so well for my mother. After some back and forth and a visit from a knowledgeable if less than personable insurance agent, Ralph agreed to go ahead and buy the insurance. He had not been diagnosed back then of course and I was not consciously acknowledging any change; in fact we joked together about his bad memory when we had to take a memory quiz to qualify as low risk applicants for the best policy available. We both passed. I can’t help wondering, if we had waited a year or even six months, would Ralph be insured now?

Thankfully, he is insured. And just as important, so am I. We don’t need extra help right now. But given the way Alzheimer’s progresses, a time may come when Ralph requires more care-taking than I can offer alone. And even now, if my health took a downturn I know I couldn’t count on Ralph to care for me. Having the long term insurance means I don’t have to.

So, at the risk of repeating myself–which I do all the time these days anyway so what’s one more time–consider buying long term insurance as soon as possible.

Decide if you can afford to buy the insurance, and if you can afford not.

Joining our Early Alzheimer’s Support Group

 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.