Tag Archives: Alzheimer’s caregiver anxiety

Relieving Alzheimer’s Stress is Exhausting

IMG_0255Ralph knows how to relax; but do I?

I recently wrote about Ralph’s good mood and said that his level of relaxation versus anxiety was the key. I wasn’t lying. Because he’s been relaxed, he has been in a great mood during the visits of both our son and our grandson and despite all the entertaining and disruption to his normal life that occurred while they were here.

There was something I didn’t mention, however, because I wasn’t aware of it until now that everyone has gone:  Keeping Ralph’s anxiety at bay has been less than relaxing for me.

The good news—I somehow lost weight in the last two weeks although I stopped exercising and started eating everything I usually avoid. The bad news—I am exhausted.

Keeping Ralph on schedule and unstressed is one thing when just the two of us are going through our set daily routine. Throw in extra people, break the routine: suddenly life gets a lot more complicated.

Not that I didn’t enjoy myself. I did because having people around to talk to and laugh with and make election jokes (kind of like funeral or Alzheimer’s jokes) with was delightful.

And not that my son and 16-year-old grandson weren’t amazing…both of them perceptive, understanding and patient.

But I still found myself smoothing things over. Making sure they were not overwhelmed by Ralph, and Ralph was not overwhelmed by them.

When my grandson told me “Oppa” was in much better shape than he’d expected, I was glad and relieved. But also, secretly, a little tiny bit miffed that I was doing my job so well that no one even noticed. (And I am not fishing for compliments here, because most of you face a ton more than I do, but I’m guessing you caregivers know what I mean.)

Well, there will be another test this coming week. Ralph has been invited to go fishing with his “fishing club,” three guys from Nashville with whom he has fished in Florida for the last fifteen years. I was originally going to drive him down, drop him off  on Monday and  pick him up from the guys on their way home Friday.

But then I realized, who was I kidding. Ralph would be increasingly anxious without me for ballast and he would end up being more responsibility than any three late-middle-aged (to put it kindly) guys could handle. So I am going too. We’ll see how I like being one of the guys.

Scattered,Bothered and Bewildered Am I–But Not a Nurturer by Nature

tire change

So yesterday, driving Ralph home from his shrink appointment in Atlanta an hour away, I hit a curb and flattened three tires. The day before I was writing an important email to an editor I wanted to impress and somehow hit send halfway through the first sentence. Sunday I was annoyed that all the guests arrived late to the brunch/shower I was co-hosting until I discovered the invitation said 11:30, not 11:00 as I assumed. (Well, my co-host got that one wrong too).

I tell these screw-ups on myself because I am aware that lately I have not been paying attention, that I am even more scattered.

Of course, I sometimes worry that I am “catching” Ralph’s Early Alzheimer’s, but more likely I am paying the cost of doing business as a caretaker without a caretaker personality.

The other night a friend from my adolescence called, and we had one of those wonderful rambling two-hour phone conversations that seldom happen anymore. Back when such calls involved sitting on the floor mindlessly twisting the phone cord while I chatted, she was the one everyone in our circle assumed would be the one with a big family. She was the warm, loving one. I was the one with edge.

But the other night she told me that dealing with her elderly parents who live across the country has taught her that she is not a nurturer after all. Fortunately, her more nurturing sister is taking most of the daily responsibility.

I have never thought of myself as the nurturing type either. As far back as I remember I was angsty and rebellious, even as a toddler. My younger siblings will attest that I was seldom a protective older sister. I avoided my family whenever possible. At thirteen I decided I wanted to be a Jewish nun to avoid marriage and children.

Yet here I am. I helped raise a step-son and two kids of my own. After my mother-in-law had her stroke, I was primary caregiver until her death two years later. After my mother had a psychological and physical breakdown, she moved in with me for the next nine years until her mid-nineties when she spent her last months in a nearby nursing home.

And now I am transitioning from Ralph’s wife to caregiver. The shift has been more gradual, luckily, than in many Alzheimer marriages, but it is always in process. And if Ralph is still in denial, I am less and less.

The patience required doesn’t come easily to me. I read other caregiver blogs and am amazed at the resilience, the selflessness, the willingness to give up so much.

I am not so willing. I have if anything thrown myself into more activities, begun more friendships. And although I do bite my tongue most of the time and don’t think Ralph notices too much, I am impatient.

And I am not as focused on Ralph’s needs as a nurturer would be. I don’t know what he is doing for hours each day. I encourage his painting, but I don’t push him to listen to music or talk about his past the way I know I should. I don’t get him to dance or bowl or join some activity to get him out and about. I don’t suggest we take walks together because I like walking with my women friends more.

And you know what, I am not a bad person. This is what I tell myself, anyway. I do what I can.

And I just need to calm down, take a breath, and put one foot in front of the other without tripping on my shoelace again…

Alzheimer’s and The Downsizing Decision, So Far Deferred

Driving to the recycling center the other night, I was listening to NPR when a story came on about a man with Early Alzheimer’s. Naturally my ears perked up.

Journalist Greg O’Brien has been chronicling his advancing Alzheimer’s in a series of reports called Inside Alzheimer’s. For those facing their own or a loved one’s Alzheimer’s, especially in the early stages, this series from NPR is worth checking out. A range of subjects are covered from telling the kids to hallucinations, to caregiver anger. Not all the topics may be relevant to your situation but you’re bound to find one that connects.

For me it was definitely the piece the other night. Greg and his wife have decided together that it is time to sell their home on Cape Cod and downsize before his condition deteriorates. Greg talked about packing up with the help of his kids and about the pleasure of finding mementos that vividly brought back to life the family’s past.

As Greg talked, I knew Ralph was sitting at home on the porch listening to NPR and I worried how the story would affect him, wondered if he would compare himself to Greg. Because frankly I was comparing them—the same way I compare Ralph to all of my on-line friends who write such articulate blogs about the early stages of Alzheimer’s.

You are all so strong, so wise, so likable in describing your struggles.

I admit, I can’t help what I know is an unfair thought process: wishing Ralph could be more like you and push himself to live life to the fullest. Of course, I know that I am being unfair. It is as if I am asking Ralph to get over this cognitive glitch, as if he it’s his choice, so he can start remembering and I don’t have to be so responsible.

Greg’s involvement in deciding to sell his home was really hit me because I really don’t know how I am going to get Ralph to leave our farm. And the time is approaching. I spent the morning looking at real estate. I am thinking of moving us, at least part-time to New Orleans where my daughter and her new family have relocated so we can share childcare with Ralphcare.

Ralph knows this, sort of. Sometimes he can analyze the pluses and minuses with helpful perception. Sometimes he thinks spending time down there is a great idea. Sometimes he looks at me as if this new idea, which he is sure I’m presenting for the first time, is nuts.

This possible move of ours is the biggest  financial, emotional and logistical decision I have had to make since Ralph was diagnosed with MCI/Early Alzheimer’s. It affects both of us.

[I would love to hear how those of you in similar situations have decided when a change in housing is necessary–whether it’s been a matter of downsizing, moving into special housing, or even living apart–and how you handled the decision-making.]

Personally, this is the kind of decision I used to let Ralph make. I would offer my advice, would influence his thinking; but for all my feminist posturing, I preferred the more passive role—that way when things went wrong I didn’t have to take the blame.

Well those days are over. Women taking responsibility for our lives is great in theory, and probably in practice–I will explore the definite advantages of feeling empowered in another post soon. Right now I can’t remember what they are. All I am feeling is that I have no choice but to take on the power of decision-making for the two of us, and after a lifetime of back-and-forth compromise (mostly my compromise that I often resented), holding that power can be scary and lonely.