Tag Archives: anxiety accompanies cognitive impairment

My Vacation from Caregiving–What Every Alzheimer’s Spouse Probably Needs

I took a vacation from Ralph last week, a road trip through Quebec with my oldest friend. (The photo is Quebec City at night.)Quebec City At Night

Two years ago I cancelled a trip with another friend to Europe just days before I was scheduled to leave because Ralph had an anxiety attack. He had just been diagnosed with MCI and, I realize now, feeling scared about his situation. This time, our niece, who is a nurse, came to stay with her three daughters aged 11 to 21, another nurse friend and my 11-year-old granddaughter. In other words, I could be guilt free about leaving him behind since Ralph was in his idea of heaven: getting lots of attention from  a harem of six charming females without having to leave home. (He did go out for one meal but mostly they brought him back take-out if he refused to accompany them places.)

Of course I did feel guilty anyway. As I walked down beautiful cobbled streets, bought the perfect silver earrings, spent leisurely morning hours reading over croissants and coffee, ate one wonderful meal after another, I could not help asking myself, “Why do I need a vacation anyway? Life with Ralph at this point is just not that hard, especially compared to what other people handle every day.”

Then halfway through the trip my niece texted, “I see why you need a vacation.” Ralph had been asking the same questions repeatedly the way he does when he gets on a jag, and he had been over-feeding the puppy with senior chow immediately after her puppy chow breakfast with predictably unpleasant doggy results. That my niece, a trained nurse, was finding Ralph exhausting was oddly reassuring and empowering. I realized that escaping the daily patience/impatience tension and being able to care for just myself was exactly the break I needed.

The relief I felt was bittersweet. But then I also had to admit another bittersweet reality: that I never much enjoyed travelling with Ralph even before his diagnosis. Our trips together were rarely successful because they brought out certain unavoidable differences in our approach to living. I like(d) to wander and explore. He liked a destination and goal. I enjoy(ed) the adventure of travel, the getting slightly lost, the disasters as well as serendipitous discoveries . He has always preferred to be in control. I even like(d) airports because they’re so divorced from daily life. Airports always made Ralph anxious even before Mild Cognitive Impairment made them overwhelmingly confusing. I used to force him to take trips with me to interesting places. Once we were there, I could seldom relax because I was working too hard to make the experience fun for him.

So much of what I write in my posts implies that I have lost something because of Ralph’s condition, implies a certain marital perfection that just wasn’t the case. I don’t want to idealize our relationship. Coming home I realize I need to face both the reality of the past and of the future. I want to recognize our past for what it was, not with phony nostalgia. Just as I need to recognize the reality of the changes, sometimes small and easy to miss, currently taking place in Ralph  so I can prepare better for the future that is inevitably coming by learning how to work the HVAC, how to spend evenings in solitude, how to travel and enjoy myself in general without guilt. When I come to think of it, I should know how to do all these things anyway.

Ralph and Lola

lola day 1

So we have a new puppy.

Ralph is devoted to his lab Zeus. The two of them spend most of Ralph’s waking hours together, up in Ralph’s office, where Ralph supposedly paints while Zeus dozes, out on the porch where Ralph drinks beer and smokes while Zeus dozes, or at the kitchen table where Ralph eats and reads while Zeus begs for scraps when he isn’t dozing. One reason I can’t get Ralph to go out to dinner, let alone away for a vacation, is that he doesn’t like being away from Zeus.

But Zeus is eleven, maybe older. He has epilepsy. And weighs at least 85 pounds. Big dogs don’t live as long as small ones. So for a while I have been worrying about what would/will happen when Zeus goes. We are not dog buyers usually. Our dogs have come to us through friends or through the pound or because they wondered up tagless. But given the reality of Ralph’s prognosis with Alzheimer’s, I began to think a companion dog with special skills might be in order. Plus I loved the idea of a non-shedding  fluffy dog and maybe a dog that was in the 30-pound range. I also worried that if I waited too long, Ralph would not be able to help with training a puppy—I am not by nature a dog person myself and have never trained a puppy. So last month I registered with a labdoodle breeder to be on the wait list for a mini-doodle puppy.

Evidently a labdoodle is not in my future however.

Because ten days ago I walked into my gym and my Pilates instructor announced she had just picked up a stray puppy and didn’t know what to do with it. The dog had wandered or been dropped at a busy neighborhood intersection. She’d already been to the vet who found no i.d. chip. Everyone in the gym was gaga over the lab mix puppy, which had on a collar but no tags and seemed underweight but not mistreated. With her pale blond coat and dark eyes, she looked like a mini-Zeus. Very mini. Whatever part of her is not lab is something small, a terrier or maybe a beagle. She—my teacher, not the puppy although come to think of it her too—gave me one of her most winning, beseeching smiles. I called Ralph. We agreed to foster the puppy and maybe keep it if no one claimed her. The signs and Facebook announcements were already going up.

Ralph immediately named her Lola, as in “whatever Lola wants…” My granddaughter came to visit and fell in love. So did my daughter. Zeus not so much. Ralph and I tried to keep our distance in case someone showed up. But Lola was, is, awfully cute. No one called. I took her for shots and signed her up for puppy class. She began to house train in earnest.

Which means I am house training her. I am also feeding her and teaching her to sit and come—as far as I’ve gotten in basic dog etiquette. Basically I do all the disciplining and getting up at the crack or dawn and at midnight for “do your business” walks. Ralph cannot keep straight what and when Lola eats or how much to feed or that she needs to go out when she whimpers, but Lola adores him and vice versa. He is the one she sleeps with on the couch. She follows him everywhere when she is not following Zeus, who has gradually learned to tolerate her. I admit I resent that she needs me as soon as I sit down at my computer, and I also resent that she prefers to snuggle with Ralph. It is baby rearing all over again.

But I realize it is good we have a dog to train now rather than later, when it would be too much for Ralph even from the sidelines. I was about to write this up this afternoon when my cell rang.

“Do you have Lola?” Ralph was calling although I thought he was downstairs with the dogs.

“No, you saw me go upstairs.”

“I came up to the barn. I thought you had her and now I can’t find her.” Basically, he couldn’t remember if he took her with him to the barn or left her in the house. I said something snarky that I shouldn’t have and ran downstairs calling her name.

“She isn’t in the house.”

“Stop blaming me. We have to find her!”

Ralph’s calm in a crisis was always one of his signature traits, but not anymore. He began to panic, the way he does these days.

I went outside and called her name but was worried myself. We live on acres and acres of pasture and farmland. It would take no time at all for a small dog to disappear. At the front of the house, I called again. She came running from the direction of the barn.

The good news: Lola comes when called and will probably grow into the perfect companion dog for Ralph. The bad news: I really can’t expect Ralph, who has raised countless dogs over the years, to keep track of the puppy he loves.
ralph and dogs

ps.  Ralph says he thinks we should get the labdoodle puppy for Lola to play with.

Learning to Love Ralph’s Mental Check Ups

“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.

An Evening with Ralph and Bob

Dylan that is.

The other night Ralph and I went to what was at least the fourth Bob Dylan concert we have attended together over the years. And since it was probably the last Dylan concert we will attend together, it was bittersweet. It has often felt as if our shared love of Dylan has been the glue holding us together as a couple despite major differences on politics, religion, childrearing, and who forgot to roll up the car windows before it rained.

Dylan has been a bond with our kids and our extended family as well. Ralph took his oldest son to a concert when he was about eleven and took our daughter when she was sixteen; our middle boy got gypped, especially given that he wrote at least one high school English paper on Highway 61 and looks a lot like Dylan (as do I according to one family joke). My daughter has kept all the vinyl records from our complete pre-1985 Dylan collection, but we still have a framed Milton Glaser graphic that came inside one of the album covers hanging in our bathroom. We also have a limited edition Dylan self-portrait print that my Dylan look-alike son gave us one x-mas and a long shelf of books by and about Dylan that my sister, another Dylan fan, has given us one at a time over the years. My daughter chose Forever Young for the father-daughter dance at her wedding last October, but first she and Ralph went through every Dylan song to find the lyrics that worked best. I am not mentioning all the hours of Ralph singing Dylan or the Christmas get-togethers set to Dylan instead of carols.

Yes, we are just a teensy bit fanatical.

Yet Ralph was not enthusiastic about going to the Dylan concert. He doesn’t listen to music much any more, and he considered getting dressed and driving somewhere (or being driven by me) “too much trouble.” But I pointed out that getting out of the house one night a week is literally what his doctor has ordered in a written prescription—she now writes prescriptions for things like “art lessons” and “no more than three beers a day”—so Ralph reluctantly agreed.

Of course our daughter and her husband were also going to the concert—she wouldn’t marry a man who wasn’t a Dylan fan– so we met them and some of their friends for funky Mexican beforehand. Ralph enjoyed the meal and the company although time and place anxiety kicked in as it does whenever he is out of his regular at-home groove. Fortunately I had reserved parking only two blocks from the venue, but Ralph, who strolls with his dog on the farm for hours, complained the whole five minutes that “we have been walking forever.”

There was a lobby full of people to contend with and the visit to the restroom, which frankly filled me with anxiety because it would be so easy for Ralph to get confused and lost. But all went well and we sat down in our seats just as the lights dimmed.

And there was that small 73 year-old man strutting his stuff and singing, in pretty good voice too, that he is “an artist, I don’t look back.” At other Dylan concerts purist Ralph has not appreciated Dylan experimenting with his arrangements, but this time he didn’t seem to mind  that Dylan only sang four or five songs that Ralph actually recognized, perhaps because he doesn’t remember the originals that well himself. And he loved Dylan’s harmonica riffs and his new version of Tangled Up in Blue. The new Ralph is non-judgmental. He just flows with the experience.

On stage experience and in the audience experience. In the past, Ralph might have been furious at the man in the row in front of us drunkenly spilling liquor everywhere and shouting requests for Isis when he wasn’t making out with his girlfriend. This time Ralph just laughed the guy off as part of the fun, a new story he might tell.

When we joined up with my daughter and her friends for a nightcap afterwards, Ralph told the story he has told ten thousand times, about when he was supposed to meet Dylan. Actually he told the store that night about six times before I stopped counting. For a man who goes to bed by eight every night, he was full of energy. I had to drag him away shortly after midnight. Walking back to the car, we passed a jazz club. Stopping to listen at the door, Ralph announced, “We need to come back here soon and do this again.” I agreed wholeheartedly, thinking what a magical night we’d had, how lucky we had this bond of music and family to remember. Maybe:

Ralph has not mentioned Dylan, the concert, or our night out since.

Lessons from Laury

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.

The Theory of Alice–A Politically Incorrect Review Revised

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

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.

Alice Takes a Short Quiz

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.

“In The Zone”

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

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.