Tag Archives: anxiety accompanies cognitive impairment

Pure Ralphness Now and Then

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Sometimes I think Ralph is more like himself now than he was before the cognitive impairment, that some essential Ralphness that was covered up by ambition and testosterone has emerged—a more thoughtful, family centered, openly vulnerable Ralph. The Ralph I always wanted to believe was hidden under his tough exterior but almost never saw.

But sometimes I think some essential Ralphness has gone missing and that I am living with a stranger. A trivial example: A few days ago I was working out the seating arrangements for our Christmas dinner. How to organize folding tables of various sizes in order to fit 25 people around one table in a 12×14 foot dining room requires a lot of geometry. Geometry is not my strong suit, while Ralph has always been a genius at spatial thinking. So after struggling with small rectangles of graph paper for two hours, I begged him to help. He had absolutely no interest. Even when I warned him that I would be moving around tables, including his beloved handmade pine table, he stayed calm and passive. When I told him there might be a hole in the center of the “table” I was creating, he surprised me by sweetly offering to cut me a piece of plywood to cover with foil to use as a hot plate.

On one hand I was relieved. For most of our marriage I could not make a decision about where to hang a picture or place a chair without being second-guessed. And “second guess” was sometimes a euphemism for harsh criticism and/or barked orders. Now I have free reign; whatever I choose he embraces.

On the other hand, I used to argue back at Ralph’s second-guessing until we came to some kind of creative if anger-fueled consensus. His logical, practical mind balanced my intuitive, impulsive one. Now I have to pick up the practical, logical slack, and I don’t like it.

Well that’s not completely true (nothing in dementia, or life, ever being that black and white or clear-cut). I am proud of myself for mastering my new skills. But increasingly I also feel weighed down from carrying the weight for two of us—always having to consider what Ralph needs as well as what I want.

And then there is the emotional shift in our relationship. The shift actually began in the years before his diagnosis—our marriage went through a wonderful honeymoon period about five years ago, as he became a gently more loving husband. Now he is so overtly dependent and openly grateful that I find myself a little condescending. But again, no black and white here, because I always thought that Ralph was more dependent on me than he could admit just as I was more dependent on him than I could admit, so we balanced each other.

And here’s the rub. It’s not that our balance is off now—although it often is lopsided—but that it’s different. I find myself secretly missing what I used to hate and hating what I used to miss about Ralph. But what I love about the new Ralph is that the man who used to scrutinize every decision in even more minute detail than me now doesn’t bother over-analyzing the future or the past. Instead he is learning to embrace the good moments and let go of the bad, whether mountains or mole hills.

Post script: I began this post almost a week ago. A few days ago our numbers changed and the tables needed rearranging. Ralph was suddenly the enthusiast, helping open and folding tables, figuring and re-configuring. And when we all gathered at the table last night for Christmas Eve, Ralph commanded from his usual seat, first chair on left. And a few hours ago Ralph made his usual December 25th comment: “Best Christmas ever.”

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.

Joy Still Happens

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

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

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

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

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

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

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

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

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

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

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

 

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.

DRIVING AND PAYING

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

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

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

Driving and paying are small acts.

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

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

Ralph’s Pre-Wedding Jitters

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

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

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

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

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

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

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

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

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

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

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