Tag Archives: when it’s safe to leave an MCI spouse alone

From Memoryland to Babyland Part 2

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It has been over six weeks since I last posted, a long stretch given I usually post at least once a week. I have spent most of that time, ever since BabyRalph’s birth, in New Orleans helping my daughter and her growing family. Basically, I have been embroiled in Grandbaby Land, pretty much to the exclusion of everything else in my life.

Including Ralph.

I write those two words nervously aware that you may be judging me as a bad wife for leaving Ralph in the breach. Or maybe I am projecting my own nervous guilt? A little of both I suppose.

But the funny thing is that Ralph is thriving in my absence.

I didn’t make the decision to be in New Orleans  lightly but I can’t say I hesitated. There were some rocky health moments in the first couple of weeks of BabyRalph’s life, and while he is fine now, he has demanded a little extra care. My daughter asked me to be there as much as possible to help. Ralph and I discussed it, and he was surprisingly comfortable, even encouraging, at least in the abstract. So after our initial visit, I drove him home to the farm and spent a few days organizing his life to work without me for the next ten days before driving out the driveway without him.

I called in favors from friends to set up a schedule of visits so that someone would be dropping by literally every day, whether to take him out to dinner or to chat for a few minutes and make sure he was okay. I set up his pillboxes. I bought and cooked frozen pizza, a roast chicken, and other favorite prepared foods.

Most important I made a new form of checklist for him: a linear calendar with times and activities spelled out in detail and a space for him to check X once he completed a given activity. Every day he was to X when he took his pills, when he fed the dogs, when he ate lunch, when he ate dinner (with menu suggestions spelled out), when Francis or Debbie or Kay etc. visited.

Ralph has always loved lists and calendars. When he ran his business, he swore by his calendar keeping and had all his employees keep detailed calendars as well. Now that his sense of time is shot—he can read a clock but has no sense of days, dates or the passage of time hourly or daily—we keep both a calendar book and an eraser board calendar for reference. (He does not use a computer or smart phone.) But this new checklist, which I taped to the kitchen counter, has been a revelation. He loves it and takes pride in checking off. The irony is that the only time he has missed taking his pills in the last two months was a Saturday when I was at home with him so didn’t have the check off list in action.

As for my presence, basically I have been gone for a week to ten days at a time, then home for two to four days, then gone again. While I am in New Orleans, I call Ralph in the morning to make sure he gets up, then every three hours or so throughout the day. And of course he calls me occasionally, although not as often as you’d think, usually when something has sparked him into a loop and he wants to discuss it over and over on the phone, just as he would if we were together at home.

But really he doesn’t seem very needy because he is suddenly Mr. Social, enjoying the company of my woman friends, “the Girls” or “my girlfriends” as he calls them, who sit with him during his late afternoons on the porch and sometimes drag him out to dinner. The woman who has cleaned my house for twenty years comes by twice a week (refusing to take money for the extra visits so we have arranged a barter) to make sure he has everything he needs. Everyone who comes, knows to check the pill box just in case and to make sure there are never more than a few beers in the fridge as well as where to hide the extras.

More important, so far everyone has let me know that Ralph seems to be not only holding his own, but in great spirits. Of course I worry, am I being selfish.

As a wife I should want to be with Ralph more than with anyone else. But the truth, and it is not easy to face or state, is that I can’t say I have missed Ralph as much as I think I should (of those shoulds!). This time with BabyRalph and family—filled with three-hours-of-sleep nights, endless laundry and washing of baby bottles and pumping implements, constant carpooling of a social butterfly thirteen-year-old adapting to having a tiny half-brother, and all the extenuating tensions of a life-changing event—has been a kind of vacation from my usual responsibility. I know Ralph may be less able to handle my absence going forward so I am taking advantage of the opportunity.

But I find myself wondering more and more how I am going to give up spending so much time with BabyRalph and how I can finagle Ralph into spending more time down here too. This is the crux of so much. As a married couple, the decisions of where to live and how to spend out time should be joint decisions. But I know we cannot live indefinitely the way we do now, on a farm that leaves us somewhat isolated and that Ralph can no longer keep up on his own. BabyRalph’s birth has thrown a spotlight on the need to make a decision sooner than later, but also on how complicated and difficult that decision and the ensuing changes will be…

Cognitive Testing-No News IS Good News

Between MCI and Alzheimer's, Uncategorized, , , , , , , , , , , , ,

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Annual Cognitive Testing Update—No News Is Good News

We went for what has been a semi-annual appointment at the Emory Brain Center yesterday and the news is a sigh of relief:

No change in Ralph’s memory from a year ago (ie still “awful” according to N.P. Stephanie, who was smiling because awful is much better than “getting more awful”)

Executive function holding steady

Problem solving holding steady

Mood, if anything, improved

Apathy and low energy, which N.P. Stephanie addressed by lowering the dose of Lexapro. If he doesn’t not appear more anxious, we may cut it out all together (although I suggested that I might require his portion)

Ralph allowed to drive his tractor but not drive his car alone except to the convenience store three miles down our own road

Alice allowed to leave Ralph home alone for several nights at a time as long as there are friends and Alice phone calls to check on his meds and meals

 

Actually the big change was that N.P. Stephanie suggested that, barring a problem arising, we skip our usual six-month visit and wait to return next July.

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

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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.

An Evening with Ralph and Bob

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

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.

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.

A Mountain or A Molehill of a Bad Night?

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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.

Special Delivery

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

Yesterday, I asked Ralph to stay around the house and watch for a UPS shipment while I took my mother to the doctor and then handled a business transaction concerning the sale of our business. Before I left the house Ralph asked me repeatedly why he needed to stay in the house. Once I was gone, he called me repeatedly asking what he was waiting for and worrying that it hadn’t come. At one point he left the house and waited in the barn, against my specific instructions, until I told him in the next phone call to go back to the house.

His problem was anxiety, not memory, or it was memory compounded by anxiety. But since the package was my daughter’s wedding dress (sent to us so the groom would not see it by mistake), my anxiety got pretty high too. Especially when Ralph stopped calling or picking up his phone when I called him for an hour while rushing home.

Of course once I got home, he was sitting on the porch with the dog and a beer. “Oh yeah, I think something came,” he said when I asked, “That big white box in there?”

Once the package came, it stopped being something he needed to remember so it didn’t occur to him to call and tell me. Besides, he’d left his phone somewhere in the house where he couldn’t hear it ring and needed me to find it.

The bottom line is that Ralph managed fine and the dress is safe. When my daughter nervously texted from her job to ask if it arrived, I couldn’t help teasing her—as if an already tense bride-to-be needed her mother to make things worse.

“If what arrived?” I texted back, before quickly, and guiltily,  texting again, “Safe and Sound.”

The joke’s on me because now I have to wait to open the box and look at the dress until she comes out here on her day off. The anticipation is driving me nuts…it’s a different kind of anxiety than I’m used to these days and one that’s a lot more fun.

Travel–My First Crisis as an MCI Spouse

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One of the sticking points in our marriage has always been that I love to travel but Ralph doesn’t, unless it’s to go fishing. So I was incredibly excited last spring, just over a year ago, when a friend invited me to accompany her family on a cruise through Northern Europe. Two weeks all expenses paid! Even my airfare would be covered!

Aware this might be my last chance for an adventure, I was dying to go. Ralph had been given the neuropsychologist’s initial assessment of MCI by then and we had recently visited the Emory Memory Clinic for the first time. But except for repeating himself a lot, Ralph was pretty much the same self-sufficient guy he’d always been– working in the office every day, fishing with his pals, arguing about politics. I told myself he could certainly manage  without me. Still good wife that I considered myself, I told my friend that I couldn’t commit until I spoke to Ralph.

I brought up the trip with trepidation, not sure how he’d react. He might not enjoy travel himself, but he didn’t much like being left behind either.

“No question, you’ve got to go.” Ralph’s enthusiasm surprised me. “This is an offer you can’t refuse.”

He seemed more relaxed than I was  during the flurry of preparations. Over the next month I bought walking shoes, stocked the freezer with the frozen potpies Ralph loves, planned a long fishing weekend to keep him occupied at least part of the time while I was gone.

Then Ralph woke up one up one morning, five days before I was to fly to London, and announced angrily that if I went on this trip, I might as well not come back. I lashed back at him with resentment and plenty of anger of my own. How could he wait until the last minute? What would I tell my friend and her family? Why was he such a controlling bastard?

“It’s your decision,” he said before storming out of the house.

We headed to our shared office in separate cars. The cadre of supportive, well-meaning woman friends I called as I drove all agreed: Ralph was being ridiculous; he might have minor memory issues but he could function alone perfectly well.

I eventually called the Memory Clinic for professional back up; after all, I had heard our neurologist say that Ralph had ONLY MILD Cognitive Impairment.

Talk about a bucket of water in the face!  Both the nurse practitioner and social worker explained what I should have realized—capacity to function aside, Ralph’s fear had to be respected.

I went to him and apologized. He said if I really wanted to, I should go after  all. Then we talked with more honesty and intimacy than we’d shared for a long time. He acknowledged fears that his condition would suddenly get worse—“What if I get lost while walking in the woods by our house and you’re not here to find me?” “What if my mind just goes out all of a sudden?” It didn’t matter that neither scenario was likely; his anxiety was genuine and intense. And for this proud man to admit any fear was huge.

Which meant I had to admit my own fear: my own high anxiety about my new role as caretaker-spouse of a husband with memory loss. I had been in selfish denial about Ralph’s MCI while planning my trip, but part of me knew all along that going away for more than a couple of days would be a mistake. Once I said I wasn’t going, I was oddly relieved: What had I been thinking to plan such a trip?

My friend refused to let me feel guilty about cancelling. Her father refused to let me pay him back for the non-refundable tickets. The kindness of strangers is nothing compared to the kindness of friends.

As for the two weeks I didn’t travel to Europe, I have no regrets. In fact those two weeks were a gift because I ended up going with Ralph on that long fishing weekend I had organized for him, along with my daughter and her boyfriend, and while we were all together, they got engaged. Now if I’d missed that….