Tag Archives: coping with a spouse’s cognitive impairment

Joy Still Happens

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

Today we went on our annual Christmas tree hunt. We have cut down a tree on the farm almost every Christmas since we moved down here.

Ralph and I still remember the first time, 25 years ago. Piled into our old Suburban with our two kids, our friend Amelia and our two dogs, we drove all over the land we had just purchased. We didn’t know our way exactly and the roads were overgrown so we got stuck several times as well as a little lost, although Ralph wouldn’t admit it. He shot mistletoe out of some very tall trees—who knew that’s where you found mistletoe—and cut down two beautiful pines, one for our family and one for Amelia’s. Then we drank hot chocolate. It could not have been more greeting card perfect.

But of course life changes. Amelia moved out of our lives. The dogs died and were replaced by several generations of new pets. The kids grew up and although they have never have missed a Christmas yet, I worry every year that this season will be our last together as a family. Then there is the change in Ralph himself. He used to be the center of activity and now often prefers the sidelines, napping when the others go off on adventures.

And it has become harder to find a decent pine. There aren’t as many out there, either because we cut down the good ones or let them grow too large. For the last few years, Ralph and I have dragged along grandkids or nieces, city kids who try to be patient but quickly get bored traipsing through fields. But this year there is no one around but the two of us.

So I expected Ralph to tell me that looking for a tree would be “too much trouble”– his current catch phrase regarding so many activities we used to enjoy. Frankly, in this case I was secretly thinking he might be right, that a bought tree, with its perfect limbs, might be a pleasant change from our usual Charlie Brown monstrosities. But Ralph surprised me.

He was eager to go out tree hunting. And he remembered for two days straight that we were going to go today. He even made sure we gassed up the truck before we started. And off we went. Although our paths were mowed during the recent wedding preparations, the grasses are back up high and it was our normal bumpy ride, but at least there was no rain and it wasn’t too cold.

Soon, not far from our pond, we noticed a tree with potential, despite a flat side. I suggested we tag it with a pink ribbon, but Ralph insisted that he would remember where it was. After a lot more driving, also jumping out of the truck opening gates and stomping through high grasses, we found another tree, a tall one in a thicket of our old cow pasture. This one I made him tag. We spotted our third possibility in the fenced pasture directly behind the house. Ralph was happy to tag this one, and I took a picture to compare to our other choices.

By now Ralph had no clue where the other two choices were—or that we had seen other potential choices at all. As he followed my directions back across the pond, we joked about his memory in a way we don’t any more. And then we agreed, almost casually, that his condition was likely to get worse. Ralph’s potential future with Alzheimer’s has become the elephant we don’t always acknowledge taking up half the room, but in that moment of acceptance, it seemed less scary.

Because we were having too much fun. Both of us. There we were, two sixty-something-year-old cynics driving around in a beat up truck debating over the perfect height and shape of straggly pine trees as if our lives depended on making sure we didn’t end up with a bare spot in the branches. And it was great.

Lately I worry that we no longer connect as equals. It bothers me that Ralph is not interested in all the issues and concepts we used to discuss/argue about so energetically. Not only has he lost his appetite for current events but what is worse, he doesn’t want to challenge me about anything more important than whether he’s taken his pills. When he talks about the dog and the weather or repeats and repeats his anxiety about some mundane issue that has long been settled, I feel myself patronizing him. Not a good feeling. I have to remind myself who he has been in his life.

But this afternoon I didn’t have to make myself remember what I used to enjoy about being married to Ralph; I simply enjoyed being with him.

 

The Ever Changing New Normal

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

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.

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.

DRIVING AND PAYING

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

A few days ago Ralph had an appointment at the same dentist’s office he has frequented for thirty years. When I first made the appointment, I asked if he wanted me to come along. He said I should just write out the directions (he doesn’t use GPS). A lot of me wanted to agree since I don’t much like giving up the time—an hour each way plus the visit itself.

Then reality set in. After confirming the appointment a couple of days ahead, I began to worry about sending Ralph off on his own. I imagined him circling Atlanta, lost on streets that have been familiar to him for years. Fortunately, if  sadly, Ralph decided he wanted me to drive him after all. The anxiety was too much for him.

So I drove him into town and read People Magazine for an hour in the waiting room. Then I paid for the visit with my credit card and drove us home.

Driving and paying are small acts.

But they epitomize just how much our lives have already altered since Ralph’s diagnosis of MCI. Ralph, the man who spent his career as a self-proclaimed entrepreneur, no longer is comfortable or even interested in handling money. Ralph, the fix anything guy who was refurbishing and selling old telephone trucks for a living when we first met, prefers not to drive at all. And impractical, absent-minded professor type Alice, who couldn’t balance my own checkbook or change a tire to save my life and whose kids still tease me about my nervous driving, has taken over all the practical issues in our life.

Driving and Paying: changes that not only  define our daily mundane routine but  serve as metaphors for the larger, psychological and spiritual landscape we have begun to inhabit . And it is scary to examine that landscape, not only for Ralph’s future but also my own. But in my next few postings, I will try–if the daily and mundane don’t get in the way as they usually do lately.

Mood Lasts Beyond Memory for Alzheimer’s Patients

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

“The fact that forgotten events can continue to exert a profound influence on a patient’s emotional life highlights the need for caregivers to avoid causing negative feelings and to try to induce positive feelings.”

This quote comes from a University of Iowa study on mood retention among Alzheimer’s patients, results I heard discussed a few days ago on NPR. The interviewer was thrilled with the information. And I know I should be too. After all, Ralph is still in a great mood ten days after we hosted the wedding because he knows he had a wonderful time even if  he can’t remember almost any of the details.

But what I actually thought as I listened to the earnestly enthusiastic young researcher was, “Oh great, now I have another reason to feel guilty.”

What I heard her telling me was that If feelings linger after the memory fades, I am “causing negative feelings” in Ralph more often than I want to admit. I see the way his face collapses when I am short with him after he asks me where I am going for the fifth time in half an hour. Or when I get annoyed that he has forgotten to take his pills or has not given me an important message from the electrician or has gone to bed before eight after spending the entire afternoon asleep on the couch. Less than a minute ago, he interrupted me as I was typing here at my desk with another question I had just answered, and I shouted down the stairs Not Now I’m Busy in a less than kind voice. Since Ralph’s diagnosis of MCI over a year ago, I have told myself not to feel bad about outbursts of impatience because he won’t remember. Evidently I was wrong: an essential non-cognitive part of him will remember.

Coincidentally, the blogger of “Not My Original Plan” –whom  I much admire for her realistic and committed optimism–writes in her most recent post about enjoying her mother’s lingering joy after the actual memory of an experience they have shared together fades.  I know I should follow her example and be glad that in some essential way his loss of memory has not robbed Ralph of his emotional life. And most of me is glad.

But to be honest, another considerable part of me liked thinking I had an escape hatch from responsibility:  I could let down my guard and be selfish or mean or emotionally lazy without it counting as long as Ralph wouldn’t remember.  That escape hatch is closed from now on, and I can’t help letting out a short sigh of “caregiver” fatigue.

Ralph’s Pre-Wedding Jitters

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

We are down to the last few days before the wedding and it is bittersweet in all the expected ways, but Ralph’s MCI/cognitive impairment adds a layer of intensity.

The bride and groom seem to be over the humps of pre-marital jitters and moving into pure excitement and impatience for the day to get here already, although I do spend a lot of time calming the bride-to-be down about mostly minor issues.

The rest of the time I am walking around the house in my glittery new silver pumps getting used to two-inch heels on my still-recovering ankle when I am not running out to buy flashlights (a little obsession of mine, that the path to the parked cars will be too dark) or pecan pralines for the guest goody bags or garbage bags (controlling the mess, another embarrassing obsession). My day starts early and ends late, including quickie visits to my mother, whose health is shakier and shakier as the wedding approaches.

But adrenaline is fueling miles of energy I never knew I had. And I have moments of incredible joy when little details come together that seem symbolic of the coming marriage.

We spent last evening with our daughter and one of her two brothers and our granddaughter, whom we had not seen for a year. Like at the Thai restaurant last week, Ralph was amazing. There were the usual discussions that began “remember when” and he always did remember, at least some version. When sibling issues began to percolate, he jumped in and smoothed the waters. I saw him through the kids’ eyes:  the patriarch, imposing and beloved.

But today Ralph is suddenly a little lost, probably because he has finished all the pre-wedding chores that have kept him scheduled into a routine. Plus this is his baby girl getting married and as much as he likes her intended, he is only half-joking when he says he would rather she move home and take care of him.

When I left the house at 11 this morning, he was still in his bathrobe. When I got back at 2:30, he had forgotten to eat lunch—I suspect he had been asleep. After I gave him lunch, he drove to the gas station for a six-pack of beer. That was his only activity of the day.

Yet he is exhausted and talks openly about how anxious he is feeling. Tomorrow I will have him help me put up signs to the ceremony and reception sites. He does much better when he has a chore to accomplish.

Tomorrow night, the whole family descends and my guess is he will rally, at least outwardly. (No, I am not cooking; take out bbq will do fine.) But the anxiety is not going to abate. His inability to keep straight the details of when-and-where-and-who is staring him down in a way he can usually avoid but finds impossible to ignore this week. He is openly nervous about the physical details but I suspect his bigger concern is interacting with so many people and keeping straight the details. Since I may be busy with hostessing duties, various friends are planning to keep an eye on him, but I know that when Ralph starts getting disoriented I am the only one he wants nearby.

He keeps asking, “How do you  me  stay so calm?”

I avoid answering, but really, I have no choice; someone has to stay calm, the same way one of us has to keep remembering for the other.

Dinner Out

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

What a wonderful evening we had tonight. I am giddy over it.

A few years ago running out to the local Thai restaurant for an hour would not seem a big deal, especially given that we were home in time for Ralph to go to bed by his usual 8:30. We used to eat out several times a week trying new places, some fancy, some ethnic, some greasy spoons. One of the real joys we shared as a couple was food because both of us have always been adventurous eaters.

Tonight the food (though it was surprisingly good for our small town) was beside the point. The point was that Ralph actually came with me. Lately when we make plans to go anywhere–dinner, a movie, to visit our daughter– Ralph decides at the last minute that he is too tired to go, but tonight he showered and got ready without my nagging.

Of course, as I drove us into town I had to remind him whom we were meeting , my friends Francis and Susan who are sisters. Francis recently stayed at our house for two weeks; we ate together every night and she sat  with Ralph on the porch. Nevertheless, it took some serious prodding for Ralph to remember exactly who she is. He has met Susan a numerous times; she works with several of Ralph’s buddies from his twenties about whom they have gossiped with great pleasure. I don’t think she noticed that he didn’t have any memory of her or their connection.

Everyone felt new to Ralph; and Joe, a friend the sisters brought along, really was new, someone neither of us had met.  As it turned out, having new faces gave Ralph just the audience he needed. He told stories while eating whatever I ordered for him. If he repeated himself, no one particularly noticed or cared. He laughed more than I’ve heard him laugh in ages He was relaxed and completely charming. Wonderful company. The man I fell in love with years ago.

So what if he went to bed as soon as we got home? Unfortunately Ralph probably will have forgotten by tomorrow what a lovely evening we had, but  I can remember it and savor it for days. And one thing about MCI, at least at this early stage, is that I have finally begun to live in the moment, at least occasionally.

Wedding Preparations Don’t Stop For MCI

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

Long before she received her engagement ring, our daughter made it clear she wanted to have her wedding  on our farm, where she and her brother grew up doing chores, riding horses and complaining that we lived in the middle of nowhere. Watching the recent cognitive changes in her father only made her more determined.

“Something simple, a simple farm wedding.”

In barely two weeks 120 guests will trek a wooded, far-from-manicured path out to a clearing within a pecan grove where they will sit on hay bales  to witness  Hilary’s wedding. Her older brother will play the bagpipes AND the sitar during the ceremony. A close friend will officiate. The groom’s ten-year-old daughter will be maid of honor. Everyone will then stroll back to the banks of our fishing pond to celebrate with  dinner, drink and a live bluegrass band under the stars (with a covered hay barn nearby just in case). We’ll eat wedding cake baked by my daughter’s best friend’s mother along with the 130 individual jelly jars of tiramisu she and I made together on Sunday.

It all sounds and hopefully will turn out to be delightful, but that “simple farm wedding” has ballooned into quite a production. While my daughter and her intended have done most of the decision-making and a lot of the organizing, the party is in our backyard—not to mention that a lot of guests will be camping out afterward and I’ll be feeding them the next day—so getting the farm ready has been Ralph and my responsibility.

Responsibility is not something Ralph likes to take on these days. His Mild Cognitive Impairment means that he can’t remember making or receiving phone calls, let alone the content of the calls. He gets anxious about dates and times. He needs 12 hours of sleep at night plus a nap in the afternoon. Nevertheless, as the wedding approaches he has stepped up and taken on extra responsibilities, just as he did this past winter while I was recovering slowly from a broken ankle.

In the last couple of months he has mowed our big pastures on his tractor, used the smaller mower at the reception and wedding sites, made the small repairs I’ve requested around the house because I am mechanically inept, and done various other chores. Given his limited mental and physical energy, he usually starts around 11am and quits by 2pm to sit on the porch until his nap before dinner. The farm, which was looking more than a little downtrodden, has spruced up in slow but steady increments. Next week he will use the tractor to smooth our ¼ mile unpaved driveway. As long as I remind him with his daily list.

I have to be careful though. Too much instruction or pressure definitely backfires. His memory blocks up. I am learning to control my natural impatience over how slowly long-term goals get accomplished and to bite my tongue when Ralph mows where he’s not supposed to instead of where I asked. Eventually he seems to follow through on every request more or less.

So although I lie awake every night worrying about where people will park, this wedding has been a boon. For a man whose attention span for reading and even television has dried up, Ralph has been remarkably focused. And he’s so good-natured about it. (Pre-cognitive impairment, he would have been super competent but grouchy.) He’s even relented and agreed to a new suit.

But there is a downside. As the day approaches, his anxiety rises. “This is going to be a disaster isn’t it?” he asks everyday, and since cognitive impairment has not impaired his fatherly ambivalence, he always adds, “Jason’s a great guy, but I don’t want my baby girl getting married at all.”

Silences

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

I am not going to pretend that there were never silences in our marriage before Ralph was diagnosed with Mild Cognitive Impairment. Our arguments included the silence of resentment, the silence of fury. Ralph and I argued a lot since we were frequently on different wavelengths about everything from child rearing to national politics. But when those silences happened, I was passive-aggressive while Ralph used to be the one who eventually stormed and stomped beforehand.

…..Not to diverge but I just noticed that I write Ralph used to be the one who an awful lot     in my posts:                                                                                                                                                                                  Ralph used to be the one who complained about silences.                                                                     Ralph used to be the one who followed a regimen with medicine.                                                    Ralph used to be the one who was more outgoing.                                                                                                           Used to be the one who took care of our business affairs,                                                                                          Used to be the one who was into rules and regulations,                                                                                             The one who drove too fast.                                                                                                                                                The one who was charismatic,                                                                                                                       Who loved to analyze politics,                                                                                                                        Who was good with facts and figures,                                                                                                            Who was the family disciplinarian.                                                                                                                  Who could remember everyone’s name,                                                                                                     Who was intellectually and emotionally passionate.

Now Ralph has relinquished many of his roles, every one of those listed above. Meanwhile I am taking some but not all of them up in his place: yes, I’m the one running the business, setting the schedule if not the rules, remembering whatever needs remembering, but not picking up the slack on passion or charisma.

Sometimes, especially when I receive sympathetic comments, I wonder if I am giving people a lopsided view of Ralph here. Too much Ralph used to be.

Because the fact is, Ralph still functions on a daily basis pretty damn well. He can drive a car (even if he can’t remember directions), he can go to the hardware store and discuss why the tub leaks with our plumber, he can fix complicated machinery. He can carry on a perfectly reasonable conversation, even if he doesn’t remember it afterwards. If you met him, you would probably wonder what all my fuss is about.

Sometimes I wonder myself. After all, we have not really argued in months. Sometimes I am short-tempered and speak harshly, but he doesn’t remember long enough for my behavior to matter. And he almost never expresses anger himself. It takes very little to keep him pleased: whatever I cook for dinner is delicious these days, whatever I wear looks great, whatever he reads is interesting.

If anything, he is too easily pleased. Our lives have flattened. I am ashamed  how bored I get with Ralph’s conversations about the weather and the dog, yet how disinclined I am to share my own thoughts and feelings with him—I’m embarrassed to admit that I’ve stopped trying very hard. Writing these sentences forces me to acknowledge that while I know who Ralph used to be, I am not at all sure who Ralph is now or who we are together.

I have read enough about the later stages of Alzheimer’s to realize that down the road I may well look back on these early days of Ralph’s cognitive loss with nostalgia. But right now I’m nostalgic about our imperfect past, even those churning  silences we used to share as furious but passionate equals.