Tag Archives: caregiver

Money Talks….

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

According to a recent article in the New York Times: “As Cognition Slips, Financial Skills Are Often the First to Go.”  financial cognition is one of the first skills to go. According to Ralph: Money talks, bullshit walks.

When we first met, Ralph was something of a hippie entrepreneur. By the time he was thirty, he’d dropped the hippie part and considered himself a real estate entrepreneur—buying, renovating, managing and leveraging small apartment buildings–while I pursued my less than financially lucrative writing ambitions. Then his longtime bookkeeper quit suddenly and I had to take over the day-to-day bookkeeping. At the time I didn’t want to take on that responsibility, but in retrospect I am really glad I did. When I needed to liquidate the business two years ago, I knew the basics, like where the checking accounts were, but also the larger framework of how to run the business the way Ralph did. He remained the one who made the serious financial decisions, but I watched and learned.

And what I learned was to be obsessively careful. I used to tease him about the way he analyzed and re-analyzed every business decision, going over and over the worst case and best case scenarios, ‘running the numbers’ as he called it. So what struck me in reading the Times article was this line: “It may become more difficult for people to identify the risks in a particular investment, and they may focus too much on the benefits.” Ralph’s last three investments were frankly terrible.

Luckily those were his last investments. Unfortunately, they were his last investments because Ralph’s follow-through was also going. Ralph always took great pride in being “a closer.” So what I saw as his flagging interest in following through caught my eye as a problem sooner than his forgetfulness. I realize now that he probably no longer trusted his own judgment. He went through the motions, but he had checked out at least a year before his diagnosis. He sat in his office reading catalogs and magazines while letting his assistant and me run things. Fortunately, he’d done such a good job training us that we did fine for awhile.

We may have lost some money due to Ralph’s MCI, but I am kind of glad Ralph had that time to loosen his hold on the business. A grace period.

Because once we had the official diagnosis of Mild Cognitive Impairment, there was no pretending. And by the time I decided to sell the business, Ralph’s impairment was greater while his interest in anything financial had dropped to zero. The man who loved to spend days doing profit loss projections can no longer figure the tip on a restaurant tab.

My Caregiver’s Dream I’d Rather Not Analyze

Caregiver/Spouse Issues, , , , , , ,

My dream:

I am at the beach with children, either my kids when they were still young or grandchildren I don’t in fact have yet. A blue sky and the sound of waves. We are having a good time, digging in the sand and building sand castles, throwing a beach ball. Suddenly I realize I don’t see Ralph. I call his name. Since I know he is not much for going in the water, I wonder if he has wandered somewhere? Then I hear muffled noises, look around and find him nearby buried under the sand—buried head and all so I really only see the shape of him under the sand and really only the shape of his head because he [a Freudian slip typo I just noticed and fixed–I originally typed “she”] is buried vertically. But somehow those words are burbling up through the sand. When I scoop the sand away, he is still breathing and talking as if nothing is odd….

How vivid and obviously meaningful this dream is. When I woke up I knew exactly what it meant and how it tied in to Ralph’s Early Alzheimer’s. Then emotional self-preservation  set in and blocked my analytic powers. Now I literally cannot remember what about it seemed so important. But let me try to face, here in real time, why the dream scares me on so many levels:

My panic at Ralph’s initial disappearance

How much fun I was having without him

The indistinguishable noises that were his attempt at words

Ralph buried alive

My power to scoop the sand away

Ralph’s nonchalance after I dig him out

My annoyance that he doesn’t notice and keeps on talking

Ralph’s muffled life

 

Reminders of Alzheimer’s Reality

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

This must be my week for videos. A few days ago the leader of my local support group sent this three-minute video About Alzheimer’s, from the Alzheimer’s Site blog,  tracing the changes in a person’s brain during the course of Alzheimer’s.

The film follows the areas of brain cells that die off as plaque and tangles increase, not information I didn’t know but stated/shown with a matter of fact approach I find refreshing. While I have to say that Ralph’s case does not follow the pattern in the film exactly–his memory for language has not been the first area compromised as the film suggests—the visualization and concise explanation are useful. I can imagine returning to watch the video from time to time to keep me grounded in the scientific reality I sometimes (perhaps willfully) forget.

Meanwhile at the group meeting yesterday, I was reminded just how different everyone’s situation with dementia is, and how lucky I am, so far. I attend rarely because the meeting conflicts with my Thursday morning Pilates class—and frankly I depend on that 45 minutes of intense concentration on breathing and stretching and keeping my shoulders out of my ears—but class was cancelled at the last minute and I was already walking out the door so why not.

It was a good meeting. Honest give-and-take, practical information. In the other group, all married couples, most of the spouses are still borderline Mild Cognitive Impairment like Ralph, but in this group the caregivers seem to be dealing with parents and spouses who are at later stages. One woman, “Jane,” mentioned that her husband has recently had to be moved into a care facility

When the meeting ended, she and I began to chat. It turns out her husband is 67, Ralph’s age. Okay, I thought, he must have started having symptoms earlier. Then she said he had been diagnosed exactly two years ago. Around when Ralph got his testing results.

I teared up for the first time in two years. How lucky Ralph and I are compared to others struggling with Alzheimer’s. And how cocky I have been in my fool’s paradise. Thanks to Namenda and Donepezil (plus a generic version of  Lexapro for anxiety), Ralph is holding more or less steady, but suddenly the reality of these videos and the stark contrast between Ralph and Jane’s rapidly deteriorating husband brought me up short: This is real life and Alzheimer’s isn’t going away.

So this when morning Ralph turned to me and said, “Coffee in bed and NPR, what paradise,”  I agreed. I’ll live in our fool’s paradise as long as we can.

The Theory of Alice–A Politically Incorrect Review Revised

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

After two back-to-back days of movie going last week, I got fired up to write a politically incorrect review. Something along the lines of:

The Theory of Everything, about brilliant but Lou Gehrig’s disease enfeebled Steven Hawking and his complicated marriage(s), is fairly standard, respectful bio fare but speaks to me about the nuances of living with a disabled spouse more than Still Alice’s Alzheimer’s stricken professor facing her deterioration with noble grit. Alice, like the earnest, follow-the-dots novel on which it’s based, struck me as an agenda film meant to pull heart-strings without making anyone too uncomfortable. All the chestnuts about Alzheimer’s —forgetting words, getting lost, not remembering names, faces, or recent conversations—get represented, but without much density or complexity. While Hawking came across as multi-dimensional, Alice, even in her worst moments, is always noble, essentially intelligent despite her impairment, and Julianne Moore beautiful even at her most faded. I hate the manipulation at the end when Alice’s daughter reads her a monologue and asks Alice what it means so we can hear Alice struggle to respond ‘love;’ hell, I couldn’t tell what that monologue was about. And of course I resented the spouse’s portrayal in both book and movie as a selfish jerk.

So those are the bare bones of the review I was writing in my head when I met my daughter for supper the other night. Just the two of us, a rare treat.

“I saw Alice,” she told me as soon as we were settled in with girl drinks.

“You did?” I asked genuinely surprised. I began to launch into all the things I thought were wrong with the movie. “Ugh, and that speech she gave.”

“I loved that speech.” She also loved the actress daughter who ends up moving back.

“But you wouldn’t move home to care for Dad, would you?”

“If I didn’t have a job and it was Manhattan I might,” she laughed. In fact, she and her husband are planning to move out of Atlanta in the next year, but she’s become indignant whenever I’ve raised the thorny issue of selling our farm when it becomes too much for Ralph and me. Now she added, “Really, I would love it if you and Dad moved wherever we end up. You could babysit.”

“And you could help with Dad.”

We laughed and proceeded to have our first in-depth discussion about Ralph’s condition. About whether Ralph counts as Early Onset Alzheimer’s given that my daughter noticed changes when he was barely sixty long before the MCI diagnosis; about how tense she gets around other people because she sees Ralph’s moments of self-consciousness and anxiety and how it breaks her heart; about how people who have met him in the last ten years, including her husband, don’t realize that he has changed in some essential ways; about what to expect down the road; about my frustrations; about her fear that she might inherit the Alzheimer’s gene (“but I would never have that test.”).

We were honest and respectful and loving. I left the restaurant a little elated, went home and told Ralph what a great time the girl and I had together. Also hugged him in pure exuberance. Moments of intimacy with my kids are hard-won and I will take them whenever and for whatever reason I can.

So as for Forget Alice, forget my griping in the first paragraph.

What a great movie, huh.

Energy–His, Mine, Ours

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

It’s a little after noon on Sunday afternoon. Ralph is in the bedroom “resting.” He woke up at eight and we drank coffee until nine so his morning was not exactly demanding. But we are scheduled to meet friends at the movies at 2.

Resting at length in preparation for any out-of-the-ordinary activity has become the norm. He rests all morning the day he takes his art class. He rests most of the day before we go out for dinner. He does not attach his need to conserve his energy to his cognitive issues—well, he doesn’t attach any of his behavior to his cognitive issues, but I think the resting has  to do with controlling his anxiety more than a physical need.

And if it works, great. I certainly don’t fault him for needing to rest for whatever reason. But I am also aware that his need for rest affects my own in ways I don’t like exploring too carefully. Am I as energetic as I could be or am I using his lack of energy as an excuse to be less vigorous in my pursuits as well? When he goes to sleep at eight, I often stay up alone for hours wasting my time on bad television or online robot bridge, telling myself my brain is too taxed to read—it’s not. If I don’t work on revising my novel when he is resting, I tell myself I can’t concentrate because he is in the next room. It is so easy to follow his time line and energy line, to drop down a notch or two on the activity scale. It is a dangerous slope.

Partners in a long marriage either grow together or apart. Given our particular marriage’s ups and downs, it’s a pleasant surprise that Ralph’s Early Alzheimer’s has brought us together in many ways. But I need to be careful. His cognitive failings dominate much of our marriage; I need to be sure not to use him now to let things that matter slide, to avoid the sometimes difficult choice to live my life to its fullest.

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…

 

“In The Zone”

Alzheimer's and the Arts, daily life with MCI/Alzheimer's, , , , , , , , , , , , , ,

Ralph took his first art class in twenty years this afternoon.

He agreed to go only because our physician’s assistant Stephanie gave him a “written prescription” to take art lessons during our last visit to the Memory Center at Emory.

Ralph has always been a natural draftsman, and in his thirties he took courses from a couple of relatively renowned artist/teachers who gave him real encouragement. Then life got in the way and he didn’t stick to the art. He always said he’d take up the painting again once he retired. But that was before he was diagnosed with (not so) Mild Cognitive Impairment and he has not touched a paintbrush since.

So when he told Stephanie that he had his paints all set up in his office in the barn and was going to paint soon once he had things organized, I probably rolled my eyes. He does go to his office to “straighten and organize” most days, but really he sits and smokes and talks to the dog. I am glad he has somewhere to go and be comfortable. I certainly don’t care that the office will never be organized, but I do fear and sense the mental atrophy setting in.

Like everyone involved with dementia and cognitive issues, I am aware of the benefits of art therapy. [For those interested there is a documentary, “I Remember Better When I Paint” worth checking out as well as numerous articles and essays to be read on-line.] But Stephanie and I knew better than to push that angle with Ralph, who shies away from that word “therapy”.

Instead Stephanie blamed human nature, explaining in the nicest way possible that if Ralph didn’t take an actual class he would never start to paint on his own. She told him that he needed the class to jumpstart and structure his time. (She also prescribed a weekly night out for dinner or a movie, but following that direction has proven harder for reasons I’ll explore another time.) What he would hear as nagging from my mouth became sound advice  when it came to Ralph from an authority figure who also happens to be attractive and charming.

Fortunately, as Stephanie agreed, Ralph doesn’t need to be in a special class for the cognitively impaired. He just needs a class period: A time and place on his schedule; plus an environment with other students good enough that he takes the class seriously but not so good that they intimidate him. Not an easy situation to find in a small town, but two friends separately recommended the same art teacher who has been working with a group of adult students for several years. We talked. I assured her that Ralph was not a beginner, but I also felt obligated to acknowledge Ralph’s M.C.I. just in case something came up. I assured her that no one in the class would be able to tell he had a memory problem. I could hear her hesitation, but she agreed to let him in.

Since I told him that I’d signed him up he has asked with anxious frequency what day the class was, where it was, how long it was, what he had to take to the class, who would be at the class and how good were they at painting.

He has not been asking with enthusiasm. His has been a litany of fears. On the drive to the class this afternoon—“Where is it again,” a moment of silence, “Where is it again?”—Ralph was such a bundle of nerves that I almost gave in and said he didn’t have to go. The gray, drizzly cold didn’t help; bad weather is always an excuse for Ralph these days.

But we made it to the parking lot and he did get out of the car with his supplies.

I sat with my motor running as he walked in, pretending to take a call on the cell phone. By then I was a bundle of nerves myself, the same nerves I remember suffering when each of my kids faced the first day of school. I watched through the window as he trooped into the classroom and walked up to the teacher to introduce himself.

“So how was it?” I asked when he came out two hours later.

I could tell he was in a good mood, but I was not expecting what a good mood.

“Once I got started I was in the zone,” he said and showed me the painting he’s begun. He can’t wait to go back…

How happy-making to offer a success story for a change.

OOPS

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

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.

A Mountain or A Molehill of a Bad Night?

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

I have been avoiding writing this entry, wondering if I can skip it, but if this is to be an honest chronicle, there’s no leaving out the unflattering, ugly and/or embarrassing parts.

Ralph fell on Friday and ended up in the emergency room. He’s fine, but the experience was unnerving and upsetting on several levels: as a reality check on our life together now, as a glimpse into our possible future, as a mirror into my reactions.

Ralph had injured his back last Monday and spent the next four days in serious pain. He did what he always has done with his back issues in the past —lay on his back with a brace and took painkillers. I brought him food and Advil, but to say I was attentive might be an exaggeration since I went into Atlanta for someone’s birthday dinner without him Tuesday night and was in and out of house the rest of the time, actually finding as many reasons to be out as I could.

By Friday he seemed much better. When I got home from the grocery story at 5-ish, he was sitting on the front porch talking on the phone to his sister. I was glad to see he was back to his usual afternoon routine but also vaguely annoyed with him for no particular reason except maybe caregiver fatigue as I schlepped in the grocery bags by myself. Minutes later while fiddling around in the kitchen, I heard a crashing noise. I assumed it was the dog, but—and here’s where the embarrassing, unflattering part starts—a thought slipped into my head along the lines of, if that’s Ralph dropping dead it serves him right for sitting out there not helping me with the groceries.

Of course, it was Ralph. He lay crumpled face down on the ground by the porch steps. He was not moving. What had I just wished on him? To twist the knife a little more, that very morning he’d asked me out of the blue, “What will you do when I die?” In response I had laughed uncomfortably and changed the subject. What if he’d had a presentiment?

He was conscious but unable to move his legs. His speech was slurred. I thought, stroke. I couldn’t and knew I shouldn’t move him. So I made the 911 call.

Ok, here comes the next embarrassing part: The EMT said that Ralph didn’t seem to have had a stroke or broken any bones, a relief of sorts, but that he smelled liquor on Ralph’s breath. I got defensive and said all we had in the house was white wine, which was true, and how much could he have imbibed in the two hours I was gone. The EMT said I shouldn’t be embarrassed if Ralph was tipsy when he fell. Right. I was more than embarrassed. I was half-hoping it was a stroke because that would be less difficult to explain than allowing my 68-year-old cognitively impaired husband get so drunk he fell off the porch.

On the 45-minute drive behind the ambulance, I called both my kids to prepare them just in case it was a stroke although I very calmly told them it probably wasn’t. Meanwhile I was composing titles for my next blog entry in my head, along the lines of From the Border of Early Alzheimer’s into the Abyss.

At the emergency room, Ralph was awake but very out of it. He had no memory of falling or riding in the ambulance and didn’t understand where he was. I panicked oh no this is going to be my life from now on. I have read so many blogs by wonderful people caring for their seriously debilitated spouses, but I wasn’t ready to be one of them.

The hospital tests clarified that Ralph had not had a stroke. And that his alcohol level was way over the legal limit. I was horrified. How had I allowed this to happen to him? Was he an alcoholic and I his enabler or was he a guy with a bad back and a worse memory who drank some wine on an empty stomach because his wife didn’t bother to make him lunch before she went out and he forgot to eat)? Either way, I was at fault. The medical staff didn’t seem very concerned—a 68-year-old man drank too much and tripped was the general consensus.

But to me and to Ralph it was a nightmare. I had never witnessed him so totally confused. And each time he asked me to explain his current situation, he became more deeply upset that his life had come to this point. “I am a man who is in control,” he repeated shaking his head.

As I drove him home minutes after he was released, he’d already forgotten we had just been at the hospital. I panicked. Was this his new memory level? I dreaded what I would be dealing with the next day and every day to come.

In the morning Ralph woke up sore, but he remembered the fall and the hospital. If anything, his memory was sharper than it has been for a while. He was mortified, worried that someone we knew had seen him in the hospital. I assured him no one had. We discussed how much he had drunk. He didn’t know but he had eaten very little and drunk on top of his meds and a lot of Advil. I explained how alcohol exacerbates cognitive impairment. He has not exactly sworn off his lite beer forever, but hasn’t had one since. He says he is more groggy/foggy than ever, but it seems to me that his memory is better and he has more energy. We are both relieved, enjoying life the way you do when you have just skirted disaster.

But for those five hours Friday night, I saw what our future might hold—Ralph’s nightmarish confusion, my cold calm covering inward fury—and it wasn’t pretty.

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.