Tag Archives: caregiver

Appreciating the Common Cold

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

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

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

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

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

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

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

Mourning Ralph’s Memory Loss As Well As My Mother

Caregiver/Spouse Issues, Tracking Changes, , , , , , , , , , , , , , ,

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

Support and Research, , , , , , , , ,

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.

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.

 

 

 

 

What If My Memory Goes Next?

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

I can believe I haven’t thought of this before (i.e. remembered) while trying to empathize with Ralph’s cognitive impairment, but  I have actually experienced a similar discombobulating state of memory loss myself: a short spell of amnesia years ago after falling 10 feet down from a filled hay wagon:

I was helping Ralph gather up bales in the field of our farm. The last thing I remember is how sticky, itchy miserable I was standing at the very top of five layers of hay bales  in the old Chevy truck-bed as I declared to Ralph that I would never help him bring in the hay again.

Then I was lying on the ground, or so I’ve been told.

For the next few days I continually asked Ralph to remind me the basic facts about our lives. I don’t know what the exact questions were, but I do remember continual foggy confusion and jagged moments of panic, then the enormous relief as facts returned to my consciousness.

Now Ralph lives with what is probably a more difficult mix of confusion and panic on a regular basis and there’s no relief in sight. While  his daily menu of donezepil, namenda and lexapro keeps him stable for the time being, he knows damn well there’s  no real cure, that his lost facts are not going to miraculously return.

Meanwhile, my memory in most areas–not counting names, numbers and my car keys–is  relatively sharp.

What makes me nervous is an article I read  that people with a history of concussions are prone to memory loss as they age.  I have also read, somewhere else, the worrying possibility that Alzheimer’s spouses are more likely to show symptoms of Alzheimer’s themselves.

I would offer a link to those articles here, if I could only remember where I found them.

I Meet Another MCI Spouse

Caregiver/Spouse Issues, Support and Research, , , , , , , ,

We are a little early for Ralph’s third of five sessions in an Emory University study on visual aids on whether certain visual clues will improve memory retention for those with MCI/Early Alzheimer’s. (There are so many studies out there right now and they all need volunteer subjects. But not every patient qualifies to be in a study. MRIs are usually required and there are often other restrictions as well but it is worth going to the Alzheimer’s Association website to check out what studies are going on in your neighborhood.)

Ralph’s study is concentrated over a two-week period. Ralph says the “homework” aides the researcher has recommended don’t help but he has returned willingly enough. I don’t sit in during the sessions but I come alone for moral support and read old magazines in the drab but not uncomfortable waiting room.

This afternoon another couple sits down in the waiting room with us before Ralph gets called in. I size them up: both husband and wife are a little older than us, probably early seventies, casually but tastefully dressed, whispering and smiling at each other with just an edge of nervousness that says they are first timers. She is lively and chatty, he more passive. Like Ralph.

But a few minutes before Ralph goes off with his researcher, another researcher comes for the wife. The husband and I are left together with the dated magazines. As we begin to chat about the weather and the time it took to get to the building, I am dying to bring up the obvious—if both of our spouses are in this study, they must both have the same diagnosis—but I don’t want to intrude on his privacy.

Before I can stop myself the letters M, C, and I are out of my mouth.

Yep, his wife is about a month behind “Ralph” in the process, not necessarily in terms of her degree of cognitive impairment but in terms of when she was diagnosed. She is seeing Doc L’s partner. She has just started the same drug (donezepril) Ralph is on. Her husband’s not sure what comes next.

I am almost giddy as we start comparing notes. There is so much to talk about that I haven’t been able to share with anyone else. Our hour or two together in that dinghy room flies by. I doubt I’ll ever see him again. I don’t know his name.

But for the first time, I realize I am not alone