Tag Archives: caregiver self care

NEW COUCH; OLD PRE-ALZHEIMER’S ANGER

If the idea of showing anger against someone cognitively impaired makes you uncomfortable, you might want to stop here. 

I am not about to talk about the resentment and frustration all caregivers feel at times. I am about to describe the kind of red-hot “Drop Dead!” fury that used to wash over me in my pre-Alzheimer’s marriage, usually over seemingly small issues that represented bigger, unspoken rifts. Over our first 35 years of marriage that fury rose up a lot in both Ralph and me, whether expressed in his ugly shouting or my snide passive aggressiveness. He was unapologetic about his “my way or the highway” attitude. I fought for equal power in our relationship, usually without success (although he might disagree), and spent a lot of waking hours seething against him. 

After Ralph’s diagnosis, his personality, perhaps even his character, changed. His enviable physical and mental energy dissipated. So did his unpleasant authoritarian belligerence.  While I often bemoaned his post-diagnosis lack of interest in the world around us and my need to think for both us, not having an often-more-than-equal partner but also has its advantages. Yes, I miss his companionship, but I enjoy his current appreciation of my caregiving and my willingness to make choices for him. His passive disinterest has meant that after years of fighting his decisions and usually losing or resentfully accepting them, I have been learning to trust, even relish decision-making on my own. 

That is, until THE COUCH.

Specifically our new living room couch. 

In the past our furniture always had a somewhat masculine quality. Rustic. Practical. Brown, lots of brown (excepting the blue green chaise lounge I bought myself as a sixtieth b-day present but ended up sharing with the dogs). His choices made sense in our farmhouse, but the city house we’re in now, with its 19th century New Orleans architecture, calls for a different, dare I say feminine approach. 

Or this was my rationale behind THE COUCH. Sick of brown and dark and masculine, I told myself that after all, Ralph and the dogs live in the kitchen/sunroom and our bedroom with occasional forays to Ralph’s “office” created just for him in the garage. Bedroom and office contain the very masculine, very brown furniture we brought with us, while the sunroom is currently a hodgepodge with one comfortable chair in which Ralph sits. 

The kitchen/sunroom in one side of French door we keep closed. On the other side is the living room, a basically empty space although Ralph and I agreed to put in inexpensive bookcases and rug from Overstock.  I also ordered the kind of probably impractical couch I’ve always wanted: slip-covered, off-white, soft cushioned (Ralph always ruled strongly against loose pillows on furniture). I actually think I talked to Ralph about the couch, but maybe not. I assumed he would not care. After all, he and the dogs never come through those French doors. 

I ordered in April and after some minor drama—a dark gray couch with weird arms arrived initially by mistake and had to be returned—THE COUCH arrived at last two days ago.

Ralph let me know his opinion immediately. He began shouting in a voice I had not heard in years as he stomped between the kitchen and the living room and I responded, not shouting but with cold-blooded rage: 

That couch looks like a white elephant in there.

I like it.

What did you pay for that thing? It looks cheap. Like it’s slip-covered.

It is slip-covered. I wanted slipcovers.

I can’t believe you spent that much.

You have no idea what anything costs.

What were you thinking choosing this?

This was what I wanted. You’ve chosen things lots of times against my wishes.

What did I ever choose?

Oh Please.

(silence as I start counting up the much bigger decisions that he no longer remembers bullying me into but I suddenly do in stark relief) 

Well, I hate it.

Well, I’m not sending it back.

Well it’s a piece of sh…

F… You.

Ralph disappeared into his bedroom. I fumed my way through preparing dinner. He reappeared and started in again with pretty much the same refrain. By the third repetition, I knew what to expect but was still mad. I didn’t care that he was cognitively impaired. I just hated him and his way of letting me know I was an idiot, of making me doubt my judgment. The way he made me feel small. 

I went to bed feeling more like a wife than I normally do these days. And guess what? I didn’t like it a bit.

Of course since then, Ralph has not mentioned The Couch. And my own anger is gone.  I’m aware that his lingering low-grade crankiness comes from a combination of an earache and taking him off his anti-anxiety medicine. Ralph is still lethargic but more on edge. I’ve already contacted the doctor. 

This little blow up was a reminder, though, not to sugarcoat what our marriage was before Ralph’s diagnosis. I am committed to caring for Ralph; but with or without Alzheimer’s, ours was always a difficult, imperfect relationship. Maybe all marriages are; just the specific problems differ.

Alzheimer’s Friendship

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Last week I had lunch with a new friend.

A month or so earlier I received an email from E responding to a post. She mentioned that we once met at a support group meeting run by the Emory Brain Center. I didn’t recognize E’s name so wasn’t sure who she was; because of the distance involved, I attend the support group infrequently at best and haven’t been back for ages.

But as soon as I saw E in person, I remembered her. I remembered sitting across the conference table from an attractive woman whose name I didn’t catch and thinking  she is really angry—angry and exhausted—and what’s more, she’s willing to admit it! She had recently convinced her husband to downsize their home, only to realize in the selling, packing and moving that her husband was more incapacitated than she’d realized. Scrunched down in my seat, listening to E talk so honestly, I recognized that I was not facing my own complicated mix of anger, stress and protectiveness toward Ralph. E’s directness and her honesty were a truly liberating epiphany.

Now here we were over a year later, sitting in a café catching up, and as E said, it was “like looking in a mirror.” Our husbands had different careers but in many ways we shared similar lives before they were diagnosed with Mild Cognitive Impairment within months of each other and began seeing the same neurologist at the Emory Brain Center. Now both men are enrolled in the same Merck study I have written about . They both are devoted to their dog. And E and I are both…. Well, we are that same complicated mix of stress and protectiveness.

As E and I sat and talked over our salads last week One of us would begin a sentence and the other would be able it finish it. We didn’t have to sugarcoat, we didn’t have to explain. The words poured out. Being with E was so relaxing.

We lingered and lingered and then we went back to E’s house and talked some more. I drove away almost giddy with excitement, the way I felt at ten or eighteen when I met a new friend.

When Ralph was first diagnosed, one of the vows I made to myself was that I was going to maintain my life, that I would keep my friendships. And I have. In fact I have a larger circle of friends and more active social life than I used to. I have worked at building a network, professional writer friends, volunteer organization friends, political friends, literary friends, movie going friends, fun and conversation friends, family friends.

And online friends through the Memoryland community—and it feels to me like a community—along with other caregiver/caregivee blog communities.

Now I have an actual Alzheimer’s friend.

A New Year’s Resolution: Self-Caregiving

2017

We all hear from and tell others how important it is to take of one self as a caregiver. Lately a Caregiver’s Bill Have Rights Has Been Circulating. The suggestions make a lot of sense, in particular to take care of myself; to recognize the limits of my endurance and strength; to maintain facets of my life that do not include Ralph; to allow myself to get angry or be depressed occasionally (that’s an easy one); to stop being manipulated into feeling guilty (that’s a hard one, no manipulation required); to accept affection, and appreciation; to protect my individuality.

But in talking to others in the trenches, I find I am not alone in feeling that, even with a Bill of Rights posted one my wall, it is not always clear what taking care of oneself means.

One example: Back when Ralph and I were first dealing with his diagnosis, I loved reading about Alzheimer’s Wife’s quick trip to Paris at https://alzheimerswife.wordpress.com/?s=paris, especially since I took a similar two day trip myself. Now my daughter is about to have her first baby and I will be traveling alone quite a bit to help out (I am dragging Ralph with me when the baby arrives but he’s made clear that he does not want to leave home more than absolutely necessary). I want to go and look forward to Nana-ing, but I find myself as worried about the arrangements for him as excited about the actual travel.

The ying and yang here is the question–Do I let myself relax into the slow down, or do I try to squeeze in some activity that ends up putting more pressure on me. My resolution for the new year is to work on finding the answer, for my sake, but also for Ralph’s because he is definitely happier when I am.

But you know how resolutions usually turn out.img_0154

(PS—Happy New Year…I’ll let you know if disinterest in grandfatherhood lasts when there is a real baby for Ralph to hold in his arms)