Category Archives: Caregiver/Spouse Issues

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.

CHANCE ENCOUNTER/MUTUAL SUPPORT

Caregiver/Spouse Issues, , , , ,

So there I was in a store at the shopping center looking for a cheap picture frame when I ran into a woman I have half-known for years. Our daughters were in school together at some point in the distant past but never actually played together. Susan and I run into each other occasionally at the grocery store. We’re always cordial when we meet and joke because we seem to have the same shopping schedule, but we barely know each other. She grew up in this small town; I’m a relative newcomer. She tall, blonde and well-mannered. I’m short, frizzy haired and socially awkward.

So after we said our usual brief hellos and asked about each other’s child, I moved down the aisle. A moment later someone called my name. I turned around and it was Susan smiling but looking slightly nervous.

She explained that she had seen my name on a group email address from a local Alzheimer’s support group I attend sporadically. For a moment I was a little shocked and almost defensive—I admit I have not quite figured out how to be totally comfortable acknowledging Ralph’s condition except to close friends—but then came the flash of recognition: She saw my name on that list because she was on it too.

We stood in that aisle for I don’t know how long, sharing our stories, commiserating, advising, laughing, and occasionally holding back tears. For two women who barely knew each other, we felt a new but very real bond and a genuine affection, not unlike what many of us care-giving bloggers feel for each other.

But this was in person. And not at a meeting of a support group, which is in some ways a time out from day-to-day life in order to focus narrowly on my caregiver identity. I certainly appreciate the lovely people I have met there, but connecting to Susan was different, a reminder of how widespread Alzheimer’s is of course, but also something larger I am not sure I can articulate. About openness, and not only openness concerning Alzheimer’s. About hoe people are always deeper and more interesting than we assume. In making facile assumptions (in my case writing off Susan as belonging to a world where I didn’t fit), opportunities for real friendship may be missed.

Susan and I parted that day promising to get together again for lunch one day. I hope we do…

 

OOPS

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So I was about to write about a little snafu caused by Ralph’s memory lapse the other day but then I had my own cognitive issue.

We received a less than friendly email from a neighbor who has been complaining about various issues. In the past when he has made requests we have always complied. This time he was mad because a dumpster on our rental property was not emptied on New Years Day. The email was sent to our business email address and to Michael, the guy who manages the property since we “retired”. In the past we have always bent over backwards to make him happy—hiring people to police the grounds, adding an extra dumpster pick-up day, acquiescing to his zoning requests to put in a swimming pool and build a wall. This time I was admittedly annoyed at the snotty tone of his letter and emailed Michael that I now wished we hadn’t offered so much in the past. Unfortunately I was emailing from my phone, was slightly distracted, and hit “reply all” by mistake.

The neighbor was not amused.

And I can’t blame my screw up on cognitive impairment. Wait, maybe I can.

As followers may have noticed I haven’t written here for a few weeks. Since Ralph was  functioning more or less as usual, I took a short hiatus, taking care of the essentials but not thinking quite so much about our situation–a small case of burnout.  And I am not alone.  Supposedly caregivers of Alzheimer’s spouses have a higher rate of anxiety that could impair cognition. http://www.alz.org/care/alzheimers-dementia-caregiver-stress-burnout.asp

The hiatus is over and I am feeling calmer about my life, but don’t tell anyone. MCI and Early Alzheimer’s have given Ralph his built-in excuse for life’s big and little screw ups . I need my own.

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.

Mourning Ralph’s Memory Loss As Well As My Mother

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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.

My Mother’s Death

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I was planning to write today about my changing identity as caregiver since Ralph’s MCI diagnosis  but plans go awry…

My mother passed away this weekend.

I always thought that “passed away” was a euphemism to avoid because saying a person died was more honest and direct. But “passed away” is exactly what my mother did. Her breathing and heartbeat slowed; her expression cleared from pain. She suddenly looked much younger, her face holding all the ages of her life—the baby she’d once been, the young woman, the matron, as well as her current 96-year-old self. Her lives/life seemed to pass through her and drift away.

We did not get along when I was growing up or when I was young or even youngish adult. Ours was a competitive relationship filled with criticisms,resentments, recriminations. But we made a kind of wary peace and  began to get along much better in the years after my father’s death in 1990. She divided her year between Florida and Pennsylvania by then but liked visiting en route and arranged to have her hip replaced in Atlanta so I could be the one to care for her during her convalescence. When her health gave out ten years ago, she ended up in my house. Partly it was practical—I had a mother-in-law suite—and partly it was emotional. She told me that she knew she could maintain a certain semblance of independence with me and implied that our cooler relationship meant her life would be calmer than it might be with her other kids with whom she was closer.

Care-giving does not come naturally to me and my old grievances against my mother did not make it any easier, but for the most part our arrangement worked surprisingly well. She had a paid caregiver. I visited her downstairs daily. In the early days she came upstairs to our space regularly as well, although with time that became harder and then impossible. She was relatively independent for probably the first five years. Then, as her health deteriorated further, I had to become more involved. And these last two or three years, first at home and then most recently in the nursing home where she moved last year, her needs and my responsibilities became increasingly intense.

I am not going to pretend I am in a state of high grief. Being with her so much for so long during this long process, I know she was ready; frankly I was ready too. For a long time I had stopped thinking of her as “mother.” She had become the helpless elderly woman I cared for almost impersonally. As the old grudges evaporated, so had much of the mother-daughter/love-hate angst that bound us.

But we had our moment of closure. My mother cared a great deal about appearance and was perpetually critical of how I looked. On the Thursday before her death, in the last moments she was even partially cognizant, she looked at me suddenly and said words I had never heard from her before. “Your hair looks nice today.”

Silences

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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.

My Mother’s Not Cognitively Impaired, Just Old

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I spent yesterday in a rush of care-taking. Not for Ralph but for my mother. This morning while I was in Atlanta buying wine for my daughter’s wedding, the nursing home called to say my mother needed to go to a hospital emergency room because her Coumadin levels would not go down. So I rushed to the nursing home (almost an hour away), then followed the ambulance to the hospital, another forty-five more minute drive, where she was admitted to the ER.  At around 4:30, while they were running tests, I drove home to check on Ralph,  drop off the wine that was sitting in my hot car, and grab an apple since I missed lunch.

I got back to the ER in less than an hour, at 5:30 on the dot, but Mom was furious, sure I had been gone for hours.

Two hours later the doctor came by to say her levels were back to normal and her overall health looked good. So I followed another EMT vehicle back to the nursing home, stopping at Arby’s so I could pick up Mom’s favorite dinner before heading back to the farm where Ralph was already asleep.

It was a long day but throughout my mother was as alert and lively as she’s been in over a year. At 96, she is bedridden, can’t hear or see very well but has a memory more intact than Ralph’s. She does suffer bouts of confusion, seeing people who aren’t there in what I consider heightened daydreams.  I would daydream heavily too if I were as bored as she seems to be. At the ER, she was thrilled both by the attention she was receiving and all the emergency room activity going on in front her. Her major worry was  that I wasn’t home to make Ralph’s supper. So when we got the upbeat results I called him and handed her the phone so she could tell him the good news.

During the nine years my mother lived with us, she and Ralph developed more of a relationship than they’d had during the previous 24 years of my marriage during which Ralph sensed she never fully approved or accepted him. He was probably right. Still he was a good sport when my she moved in. He wasn’t thrilled at giving up our privacy (and neither was I) but I think he was a little proud of being the only one strong enough to get her up—she is not a small woman—when she fell as she did more and more frequently toward the end of her stay.

I decided last fall that she needed to go into a nursing facility, in part because she was requiring more care than we could offer at home even with full-time caregivers, but also because Ralph had been diagnosed by then and I wasn’t sure what he was going to need from me. (Of course, I didn’t mention that reason to Ralph or even fully articulate it to myself.) At first Ralph was all for the move but as it approached, he began to question my decision. It was as if he were beginning to identify with her. Still, in the end, after a particularly scary event involving a 911 call,  everyone in the family agreed that she had to be moved.

Ralph and my mother have not  seen each other since she entered the nursing home. And they won’t see each other as long as she’s there, in other words for the rest of her life. He does not need to smell the hallways and see the patients lolling sideways in wheel chairs, talking to themselves,  staring into space or grabbing at everyone who passes. He does not  need to peek into the half-lit rooms like the one where my mother lies dozing most of the day. His unspoken fears about his future are strong enough.

As Ralph puts it, “it’s too depressing.”

Still, he asks me daily if she seems happy, and I always answer yes, she does.

My Confidence in His Competence–The MCI Conundrum

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

I just got home from the feed store about twenty minutes ago. Last week, the woman who pasture-boards her horse with us told Ralph we were out of feed. Unfortunately she didn’t tell me until late yesterday afternoon. I have suggested that she contact me directly when she needs anything from now on. But I’m a little annoyed because she should have known not to trust Ralph with that kind of information—and I should have checked myself sooner

Yet, as I write I can hear the humming whir of Ralph’s John Deere, a strangely calming sound on a warm summer day in Georgia. You well may be wondering whether it is safe for Ralph to be on a huge tractor if he can’t remember simple conversations? The short answer is: at this point yes.

The long answer is that we are at a strange place in terms of Ralph and responsibility. And his work on the farm encapsulates the conundrum.

Ralph loves mowing and is still more capable than most people of any age at most physical chores—a good thing since we’re busy readying the farm for our daughter’s wedding here in early October. Ralph has mowed the fence lines and frontage and will need to mow them again, he has scraped our winding, unpaved driveway as well as the dirt floor of the barn where we’re holding the reception. He works about four hours every day, rarely starting before eleven after a long morning of coffee and time with the dog. When he stops in mid-afternoon, he’s dirty, hot and tired, but he’s also savoring the knowledge he is needed and useful, and—even more important to his sense of self—still competent at what he does.

To Ralph competence, has always been a primary virtue. He may no longer be able to function as a businessman, he may not be able to remember how to get to the dentist he’s gone to for twenty-five years, he may not be able to follow a movie plot, but he is competent out in our field on that tractor—a man in control of all his faculties (or at least the ones that matter to him these days).

On the other hand, I am always a little nervous. Not that he’s unable to do the work (well, a little that he’ll drive the mower into the pond) but that he’s forgotten what work needs doing. Sometimes when I tell him NOT to mow the front field, he gets so fixated on remembering there is something about that field that he ends up mowing it. He has mowed certain fields way more often than they need mowing. I have to remind him and push him but doing either too much can be counter-productive. It is less a memory issue than one of anxiety.

So everyday, instead of over-reminding I double-check his work.

I want Ralph to feel competent for as long as possible. In fact I will him to be competent. My worry is that I selfishly have him take on more responsibility than he should because I can’t ride the John Deere or fix the plumbing or cut the firewood. What if I miss the signals warning me of decreased capacity. What if something bad happens because I am not vigilant enough. But on the other hand, to deprive him of activities he can do and loves prematurely would be a huge mistake too. This is the teeter-totter we are riding together, weighing the rise and fall, hoping not to knock each other off.

A Little Awkward Self-Congratulation

Caregiver/Spouse Issues, , , ,

Thank-you Alzheimer’s Wife for nominating me for the “Very Inspiring Blogger Award.” Since you have travelled farther along the road of Alzheimer’s/Dementia/Cognitive Impairment, I am genuinely touched that you find my posts worthwhile.

Having begun blogging just three and a half months ago in late April, I am still learning the rudiments so please forgive me if I screw up while following the Award Rules…well really, there is no excuse but I’m pretty sure I can’t follow the rules completely.

Rule 1.            Thank and link to the amazing person who nominated you.                                      See above for my appreciation of Alzheimer’s Wife who is always loving without pretending dealing with her husband Bo is not difficult. I think it is very important (and very difficult) for caretakers to be realistic about what we can and cannot do. I also want to mention the first blog that inspired me: The Alzheimer’s Spouse, whose chronicler Joan is currently facing the final stages of the battle.

Rule 2.            List the rules and display the award.                                                                                       This one is easy at least. See the award in the sidebar

Rule 3.           Share seven facts about yourself.                                                                                              Ugh, but here goes:

One. I am a city girl whom Ralph dragged kicking and screaming to our rural farm twenty years ago. Now, while I don’t quite fit into farm life, I find the city unbearably noisy and chaotic.

Two. I am 63, Ralph is 67, and we have been married for almost 37 years

Three. That marriage has really been more like three marriages—The first marriage, our first twenty years, was rocky and full of wrangling about everything from child-rearing to politics to the move to the farm; the second marriage included the few years of quiet and reconnection after the kids were out of the house (and despite the arrival of my mother ten years ago); the third marriage has just begun, and I imagine it will slip into a fourth marriage down the road.

Four. I am the oldest of four children and was never close to my mother so it is ironic that she ended up living with Ralph and me for nine years (with the help of excellent in-home care) until we placed her in a nursing home last October at age 96.

Five.  Seeing the importance of Long Term Health Insurance, I made sure Ralph and I purchased it. Ralph thought I was being over-cautious but Thank God we bought it when we did.

Six.  I find giving facts about myself difficult even though I write a blog that goes into intimate detail about my marriage and my life.

Seven. I am not a computer illiterate blogger. In fact I never read a blog until Ralph’s diagnosis when I started Googling for information on Alzheimer’s and Cognitive Impairment. In fact I am technically impaired in general, as Ralph and our children will tell anyone who asks.

Rule 3. Nominate 15 other amazing blogs and comment on their posts to let them know they have been nominated.                                                                                                                                       See the seventh fact above. I have to admit I don’t follow that many other bloggers. But among those few I have discovered so far and not counting those above, the following are my two favorites, bloggers I’d like to hang out with over a cup of coffee and whom I hereby nominate:

Before I Forget  is written by Mrs. Hsg, an incredibly brave British woman who was diagnosed with Alzheimer’s several years ago. Not only is she brave, but she is also funny. And her British take on life is thoroughly refreshing.

Enterthestorm is a new blog written by a woman whose situation sounds uncomfortably like my own. Her posts so far have been straightforward and heartfelt, painful but irresistibly honest to the bone.

Rule 4.  Proudly display the award logo on your blog and follow the blogger who nominated you.

DONE