Tag Archives: mild cognitive impairment

Ralph’s Good Memory Mood Lets the Good Times Roll

daily life with MCI/Alzheimer's, Uncategorized, , , , , , ,

 

IMG_0154.JPG                                           (rainbow at our farm one recent evening)

Anger, resentment, frustration, impatience, worry, guilt—wow, I have really sounded like an unhappy person lately.

But spring has arrived, the sky is clear, and so far the mosquitoes are staying away.

Also, Ralph is in a good mood.

Which means that he is in a good memory mood. Which means he is relatively relaxed. And when he’s relaxed, his memory lapses don’t escalate. And I have more patience. So the cycle turns positive instead of negative.

It helps that our son is visiting for two weeks—an unheard of treat although since Ralph’s diagnosis he has really stepped up to the plate in terms of making time to spend with Ralph. Last weekend we threw a dinner party with my son’s friends and ours in attendance. Guess who was the life of the party? (“Ralph is so smart and funny,” one of our newer friends said to me the next day.) And I had a good time too.

In a couple of days our sixteen-year-old grandson is arriving for one of his understandably infrequent visits from his home with our former daughter-in-law in Namibia. S’s father, Ralph’s son from his first marriage who now lives in California but talks to Ralph on the phone at least four days a week now, wants S. to have some quality time with his grandfather while he still can.

Everybody will be here to attend the art show Ralph’s art class is having on Saturday. Ralph is the only male in the class. I suspect he’ll be feeling the love on Saturday.

Then on Sunday, we’re having a picnic for S’s extended family—Ralph’s first wife with her husband, kids and grandkids as well as S’s mother’s sister’s growing family. It sounds complicated, lots of blended families.

But the thing is, there will be lots of kids here. Kids love Ralph and he’s great with them. He’ll have a ball.

As for me, it is interesting, because my reactions have become oddly less complicated. If anything, I am surprised how little I mind doing all the organizing legwork.

In the early days of our relationship, I used to resent Ralph’s charisma, his skill and desire to socialize. I wanted him to pay me the attention he paid everyone else, and I often felt like an uncomfortable afterthought among his friends.

Now that our life together has reduced down to a narrow, often lonely routine,  I get more attention from Ralph than I need or want (although I do sometimes get jealous of the dogs I suppose). So it is a gift to see Ralph caught up in the whirl of social interaction with others for a change, to see him following and actively participating in conversations.

While the others laugh at his jokes, I can relax and enjoy Ralph himself in ways I forgot, if I ever recognized, were possible.

Let the good times roll.

Another Perspective: The Caregiv-ee

Alzheimer caregiving, Uncategorized, , , , , , , , ,

 

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I am sharing this comment in response to my post about not being a particularly nurturing personality for a caregiver because it touched me deeply.

“Anonymous” bridges the divide between caregivers and caregiv-ees (a wonderful term that solves some of the linguistic difficulties presented by dementia, Alzheimer’s, patient, sufferer, etc.) because he articulates feelings we (at least Ralph and I) often have trouble expressing in daily life.

And he has a wonderful spirit that deserves to be heard…

 

“Hey Alice. It’s been some months since I’ve posted a comment, but I read all of your posts, all of the comments. I’m like Ralph – diagnosed with MCI about 7 months ago. I’m not the caregiver, I’m the care give-ee, which is why I don’t post very often. But to you and to all of you caregivers (including my wonderful wife, who may or may not know that I post here), I say – you are doing a difficult job very well! Don’t analyze too much, don’t beat yourself up. I’m still early in progressing into AD, if I am progressing at all. I’m still hoping that I’m one of the lucky ones with a MCI diagnosis who will be re-tested and found to return to “normal” cognitive performance for my age. I feel like I don’t have a problem (Ralph’s denial?) but my wife occasionally lets slip that she sees stuff suggesting that I am progressing. Anyway, my wife is very patient, either overlooking my MCI or just my “normal” age related memory issues. I am grateful for that. I’m sure your significant others, wherever they are on the spectrum (at least up until full-blown AD), are also grateful that you are hanging in there. I don’t expect my wife to be perfect in dealing with me. I don’t expect that she won’t be short with me when she tells me for the 3rd time that we’re going somewhere next weekend. Maybe it’s naive, but I bet most of the spouses you are caring for (at least until they progress to AD) feel the same. So you are the heroes. So just do the best that you can, which is good enough, and pat yourself on the back and feel good about yourselves.”

Driving and Alzheimer’s

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driving_268131086

 

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.

A Sunday Snapshot

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Unknown

It is important to remember today. Not because anything particular happened, but because nothing particular happened.

We woke and drank coffee. Then while I worked in my office, Ralph read. For a while he had stopped reading, and I assumed books, like movies, had become too hard for him to follow. But I seem to have been wrong. Today he picked up Leonardo’s Brain, by Leonard Shlain, about Da Vinci’s genius–not exactly a light romp or what I would suggest to a reader who has trouble remembering a joke by the time he hears the punch line. Ralph is finding the book “fascinating”.

We had lunch and he read some more while I walked with a friend. Now he has gone for a “walk” with the dogs—they walk while he drives beside them in the truck. Soon we’ll have dinner and watch Sunday television.

So, a normal Sunday. Except Ralph’s conversation is sharper today, his attention more focused.

I know better than to believe that Ralph is suddenly “ getting better.” But it feels important to appreciate this moment of respite: A reason to rejoice that while the thread/threat of memory loss has woven itself into the fabric of our lives, it has not yet pulled the warp and woof askew.

18 Months Post Diagnosis of MCI–Where Are We in Memoryland?

Tracking Changes, , , , , , , ,

rings

I just realized that I began blogging about Ralph and me in April of 2014. Is that only a year and a half ago? It feels much longer, as if Ralph and I have gone through years and years of changes in the last 18 months. At the same time it feels as if the two of us are stuck and not moving forward at all.

FEELS is the operative word. Feelings are subject. Feelings can’t be trusted.

A lot of things happened—deaths, weddings, children moving away, friendships evolving, business crises. The accumulation of events big and small that form our lives. But how much as really changed in terms of Ralph and me. Have we moved deeper into Memoryland.

To gain perspective I went back to my first post to compare and contrast the salient points:

RALPH’S DIAGNOSIS:

Then: He “does not yet have the disease called Alzheimer’s. He has the CONDITION called MCI.”

Now: Still true as of his last test results at the Emory Memory Center

WHAT HE REMEMBERS:

Then: Impersonal facts like those on Jeopardy, His Meds, His Daily Routine, How to Drive

Now: He watches Jeopardy but not so much. He still retains facts, but not quite as many. He still can take his meds from his weekly box. His daily routine looks about the same on the surface although his actual day has shrunk. It is hard for him to get moving before 10 am or stay up past 8 pm. And he does a lot more sitting

WHAT HE FORGETS:

Then: Who people are. Conversations. Memories, especially bad memories…

Now: Fewer conversations are retained. More people and also facts seem lost. Old memories too.

WHO HE IS:

Then: “Sweeter than he used to be; less aggressive; more patient; less easily bored (because he doesn’t remember the twenty minutes of waiting for the doctor once it’s over); more in the moment.

But also less ambitious; less energetic; less adventurous; more passive; more dependent…Passionate about his farm and his dog…able to fix anything with his hands…a voracious reader.”

Now: Here is where the changes start. His personality is if anything even sweeter, even less aggressive. He no longer has an interest in analyzing numbers, facts and human nature. He may still be able to fix things with his hands but he doesn’t have much interest. Changing a light bulb becomes a major occasion, not because he can’t but because “it is so much trouble.” There has been a shift. A subtle withdrawal from the world we share that cannot be measured by memory tests.

OUR RELATIONSHIP:

Then: Eighteen months ago, I wrote, “although I’ve been warned there’s no telling how long before MCI begins chipping more deeply into his identity, Ralph is still himself in the most important ways.”

Now: I don’t know if I can honestly make that statement today. According to tests and my own comparison, Ralph is still functioning adequately with my support, but I have more trouble recognizing the man I married. There is a vacancy, a growing disconnect, that I sense but can’t measure.

Perhaps the greater change is not in Ralph at all, but in me. The relief I felt at first when we finally received a clear diagnosis for Ralph’s cognitive changes has shifted to something between acceptance and resignation. The support he requires weighs heavier.

We get along well on a day-to-day basis We still laugh together, usually in the mornings when he is sharpest, but we have less and less serious conversation either about the world around us or about ourselves. Sometimes, in a burst of ebullience, he’ll declare how much he loves me. And I love him, but the love is different and not exactly ebullient.

18 months ago I was a spouse learning with my husband to deal with his cognitive condition. Now I am not sure how to describe our relationship. I often feel more parental than wifely. But saying so feels (that word FEEL again) inaccurate and unfair. Because whatever we have become to each other and whatever we are becoming together and individually changes every day.

Learning to Love Ralph’s Mental Check Ups

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“We” had “our” six month check up the other day at the Emory Memory Clinic. “We” and “our” are operative words because I probably get as much out of the appointments with our Nurse Practitioner Stephanie as Ralph does. The visits are medical but also psychologically therapeutic and unlike any other doctor visits I have ever experienced.

I admit it never starts well. Ralph asks if we really need to go all the way there (I have learned not to mention the appointment until that morning). And the waiting room time is always uncomfortable, Ralph and I  both secretly looking around at the other couples—everyone present is in a couple whether husband/wife, siblings, parent/child, or cared for/caregiver—trying to guess which person is the patient. I frequently realize I have guessed wrong when the person I assumed was impaired is the one who heads up to the nurse station to sign in. Ralph gets anxious because seeing people with his diagnosis but more advanced into cognitive impairment forces him to consider his own future. I get anxious for pretty much the same reason.

But once we are in the actual room, I am probably more myself than at any other time these days because we are together with someone who knows our situation, who does not look sympathetic but slightly askance at anything we say. This visit Ralph was to have a battery of tests to check his status. The tests take about 45 minutes; I actually thought of sneaking down to the second floor to say hi to a friend who works in the building. Instead those 45 minutes were filled with conversation with Stephanie about my concerns and worries. When I mentioned issues I don’t bring up anywhere else or to anyone else out of some probably misguided mix of embarrassment and guilt—and there are issues I do not bring up in my support group or even here—she responded with matter-of-fact solutions and understanding of someone who has witnessed all the permutations of cognitive impairment. My tendencies toward defensiveness, guilt, and self-justification melted. I could see clearly where I thought Ralph was on the continuum, that his memory seems to have held steady but his energy, curiosity and interest in the world has faded.

And then Ralph returned from his testing in buoyant spirits. He felt he had done really well on the test. And he had. Although he got more questions wrong than he thought, the score on his memory has held steady. (Shout of thanks to Namenda and donepezil.) He still qualifies as Mild Cognitive Impairment and is holding Alzheimer’s at bay.

We are scheduled to return to see Stephanie in six months. She said that if it was inconvenient since we come from a distance, we could skip that appointment. No way. I am looking forward to it.

Lessons from Laury

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

I recently wrote about finding the film Still Alice a less than satisfactory portrait of a family dealing with Alzheimer’s. Well,  I just watched a wonderfully honest documentary Looks Like Laury, Sounds Like Laury from the PBS series America Reframed. Laury, a wife, mother and former actress in NYC, is filmed by a friend from before her diagnosis–when friends weren’t sure if they were imagining something was wrong–through the growing realization that dementia has taken root.

Of course, Laury’s situation is not exactly like Ralph’s or mine, or yours or your loved one, because no two cases are the same. The very idiosyncrasy of Laury is what rings so true. And the reactions of Laury’s friends and family (including her little girl’s articulate best friend since kindergarten) show not only how difficult it can be for those of us who are intimately involved, but for those who are less intensely involved but who care.

Sometimes I find it hard to know what to share with friends and acquaintances. And frankly interactions can be awkward. But as I have been learning, the support and understanding of friends, even casual friends, can be crucial.

Thanks to https://annahnemouse.wordpress.com for writing about the documentary on her blog and giving the link http://video.pbs.org/video/2365437114/, which will evidently expire on April 10. I highly recommend watching while you can.

Flowers and Laughter, Ralph’s Perfect Gift

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Ralph's birthday flowers

These are the roses Ralph gave me for my 65th birthday.

Sixty-five feels like a biggie. Like everyone I know my age (except Ralph who has been saying “I’m an old man” to explain his cognitive impairment since he was, well my age) I don’t feel old. Physically I am in good health; I get plenty of exercise and, despite from those pesky escaping words and names, keep myself mentally challenged. But at 65, the fact of no turning back is staring me in the face. I have begun worrying about my sight and hearing, about the limp that still plagues me 18 months after my broken ankle, about a certain timidity that has crept into my driving. To say I’ve been obsessing about this birthday would be putting it mildly.

But then again I have obsessed over birthdays  for as long as Ralph and I have been together.

And with good reason. For most of those forty odd years, my birthday has been a day of recrimination, guilt, and tears. He almost never remembered unless one of the kids reminded him and he was terrible about getting me a gift or arranging a dinner out. I started winding myself up in a knot of resentment days ahead so by the actual day I was impossible to please anyway. One year I locked myself in the bedroom in tears rather than eat the Kentucky Fried Chicken he’d picked up as my last-minute birthday meal. But with age come a little wisdom and more patience. Also small miracles.

Since Ralph was diagnosed with memory loss, his memory has actually improved in one area, my birthday. In fact birthdays, like Christmas and our anniversary, highlight the ironic upside of our life with Early Alzheimer’s—Ralph has become an overt romantic. Boxes of candy and flowers appear magically on the big days without prompting (at least none I know about). And I have found appreciation for his effort comes much easier, especially since I have embraced planning the celebration myself (this year, because it was a biggie—the end of middle age, the beginning of Medicare—has included dinners with friends and dim sum, both attended with Ralph, plus a trip to visit my son in New York by myself since Ralph is no longer willing to travel)

So yesterday morning, I lounged in bed drinking the coffee Ralph had made me when he walked in the bedroom with a bouquet of roses plus a card. I’d guessed he’d been out present buying the day before when I caught him driving into the driveway in his truck, and I have to say the fact that he picked out a card was probably more meaningful that the flowers. But they looked lovely, the reddest roses I’d ever seen. I couldn’t believe he’d found them at Kroger’s.

Proud of himself, he went off with the flowers to find a vase. But he couldn’t find one–I used to blow glass so there are vases on every flat surface in our house–so I reluctantly got up and found one for him him. Then he couldn’t get the flowers unwrapped. So I took them from him.

“They’re not real.”

“But they were in the flower cooler at Kroger’s.” He felt the petals and considered. “You know I thought it was funny that they didn’t have a scent. I was hoping that soaking them in water all night would bring it out.” He laughed. “Well these will certainly be a gift that lasts.”

“Yes they will,” I agreed.

“I thought it was funny that they didn’t have a scent. I was hoping that soaking them in water all night would bring it out.” He laughed a few minutes later. “Well, at least these will certainly be a gift that lasts.”

“Yes they will,” I agreed again.

We must have laughed together for half an hour. And again telling the story to our friends at dinner, especially after a friend suggested to Ralph, “Put them away and give them to her again next year.”

And again when another friend admitted she had a sunflower at home that was suspiciously fresh after three weeks and she better get home and check it.

And what makes the laughter delicious and the story one we’ll keep telling is that it could have happened to anyone, not just someone with cognitive impairment or Alzheimer’s related memory loss.

I have to admit, this has been the best birthday ever, or at least since I got that brownie camera when I was six.

Alice Takes a Short Quiz

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

I used to love those self-help quizzes in magazines so now I have made up my own and taken in. I am not sure if I passed or not.

Questions:

Who did the following, A (Alice) or R(Ralph), in the last week?

  1. Who asked repeatedly where the other was going today?
  2. Who asked repeatedly what the other was doing all afternoon?
  3. Who went to an Alzheimer’s support group Friday?
  4. Who took the dog to the vet?
  5. Who could not find his/her cell phone for two hours?
  6. Who doesn’t answer the phone when called?
  7. Who answered the final Jeopardy question right?
  8. Who got in the car without putting the dog in the house yesterday?
  9. Who left the eggs boiling on the stove last night?
  10. Who noticed and turned off the stove last night?

Answers:

  1. R (Although I was only going to the gym) but also A (To remind Ralph he had a doctor appointment)
  2. A (Because I worry he just sits and smokes unless I push him to do a chore or activity); Not R (He has lost curiosity about my activities)
  3. A (Ralph refuses to go because he says one person always talks too much and he doesn’t get enough factual information)
  4. R (While I was at the support group actually; this was the first time he has taken responsibility for a chore in a while, and I was nervous about sending him alone. But he assured me that he knew the way and he did. The dog’s check up went without a hitch. The sense of normalcy was a good experience for Ralph and for me.)
  5. Well, I think that might be R and A, each on different days. (Actually I am not sure where mine is right now. Oops, there it is under an envelope on my desk.)
  6. R. (When I misplace my phone, I start calling it. When R misplaces his phone, he doesn’t notice. If I am out and checking on him, I get extremely nervous that he’s not answering. When I am the one home and he is not in the house and not answering the phone, I can get a little frantic. So far my worry has been needless, thank goodness.
  7. R (One advantage of having a husband with MCI/Early Alzheimer’s—he doesn’t lord it over me because he almost immediately forgets that he’s one-upped me)
  8. R (This was disturbing because, see 4., the dog is the area of responsibility where Ralph usually seems the most his old self; I took care of the dog without mentioning to Ralph who would have become very upset at his lapse)
  9. A (I put them on, left to check email and Ralph was the one who noticed and turned off the burner just as I was walking back into the room)
  10. R (See 9. Above.)

Answering my little quiz has been a good reminder to myself that the line between forgetfulness and Alzheimer’s related loss of memory is not always as clear. What is different is often more in the reaction. I fret while Ralph doesn’t know what he’s forgotten or that he’s forgotten. I think I may quiz myself more often to keep track of how we’re doing.

Appreciating the Common Cold

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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.