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.