Tag Archives: Alzheimer’s withdrawal from others

More About Working Out The Equation of an Alzheimer’s Marriage

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Ralph and I spent the last few days eating and sleeping in the same house and interacting with the same people and yet our weekends could not have been more different.

Our town faced a crisis this weekend because the same Neo-Nazi organization that marched in Charlottesville, Virginia, decided to hold a rally here. The city government felt obligated to issue a permit under Freedom of Speech laws (but foolishly did not think of charging them to compensate for the cost of such a rally to the town). In response local citizens, including me, organized responses to the rally. Folks gathered on the town square on Friday night to support the local businesses, which would have to be shuttered during the rally, and to help children chalk humanitarian messages on the walkways in the park where the Neo-Nazis would be convening. Saturday there was a peaceful protest against the rally and also a Unity Gathering, an ecumenical coming together of citizens of various faiths, races, and ethnicities.

I attended all of these events. Ralph attended none.

Although I discussed the situation as little as I could, I probably discussed it more than I should have. After all, I was embroiled and it was on all I was thinking about.

On Saturday (and probably even Friday night) Ralph was filled with anxiety. Safety is paramount to him these days. “Be Safe” is his mantra to me every time I leave the house, even if only to drive to the convenience store. And to be honest, there was reason for concern Saturday. Fortunately, the husband of a friend who was also attending the Saturday gatherings stayed with him during the afternoon. And more fortunately, the number of Neo-Nazis who showed up (40 minutes late to their own two-hour rally, by the way) was smaller than expected; the anti-racist protest peaceful; and the Unity gathering was uplifting in the best ways. Ralph enjoyed his quiet day and I ended up enjoying my very active one. By the next morning he’d pretty much forgotten there’d been anything unusual going on.

But that was not the end of the weekend.

Sunday night we were invited to dinner with three couples we see regularly. The get togethers have always fit the same pattern, Ralph always complaining ahead about having to go, and then telling me what a wonderful time he’s had afterward.

Not this time. As soon as we got in the car to head home, Ralph rolled down his window, pulled out a cigarette and announced in no uncertain terms, “I was ready to leave an hour ago.”

And the truth is, so was I. As much as I love and enjoy my friends, I was a tense wreck the whole time because I could sense Ralph’s misery. In the past Ralph has told his own stories and jokes and enjoyed the jokes and stories of the others, but he was much quieter last night. He would laugh when the rest of us laughed at a joke but I could tell he was not sure what was funny. He would be just that little bit too quiet while listening to someone’s story or some casual banter so I knew he wasn’t really following it. There was a new divide I could not avoid notice widening between him and everyone else. I found myself mediating, trying to cover for him much more than I’ve had to in the past. And it was exhausting.

I have read all the literature about keeping people with cognitive impairment as mentally active as possible, but I have slowly become less pushy. And I am facing that groups of more than three are now an overload for Ralph, especially when we are away from home, but maybe even at home.

So no more making him attend events where he is out of his comfort zone. Which doesn’t necessarily mean I will stop attending, does it? That is the equation I need to work out.

Has Ralph’s Cognitive Impairment Turned Me Into A Butterfly, Or A Moth?

 

IMG_0250[Fittingly this moth (or faded butterfly) has fossilized onto our garage wall]

The fishing trip Ralph was scheduled to go on last week didn’t happen. His fishing buddy’s wife got sick and needed him at home. Ralph did not mind AT ALL…”I am dreading it”he kept saying as he usually does before going anywhere… and I was secretly relieved that the four days I had resigned myself to giving up were suddenly restored. I briefly considered not telling anyone, using the found time as a holiday from the world.

But I didn’t.

Instead, I called my vegetable garden partner to do some playing among the squash and corn on Monday.IMG_0298                                                                   I spent all Tuesday morning at a business meeting I’d forgotten to cancel, then called my Tuesday walking buddy. Wednesday I went to my Pilates class and then drove a visiting photographer, sponsored by the ArtRez committee I’m increasingly involved with, into Atlanta to spend the day at the Martin Luther King Center. I made a lunch date on Thursday with a friend I knew needed cheering up. And on Friday I headed back to Atlanta for a meeting of the patient and family advisory committee at Emory’s Brain Center.

Then I picked up my daughter at the airport. She and her husband came to stay at the farm for the weekend and we all attended a wedding together.

In the years before Ralph’s diagnosis, this week would have seemed a whirlwind of social activity.

But as Ralph’s social world contracts, mine seems to expand, as my recent posts attest. This is in many ways a good thing. I love having new friends, love being engaged with the world around me. But I also recognize a certain manic need that I need to face more squarely….

I was the kind of child whose grandmother caught me hiding in the coat closet at family gatherings. As I’ve written here before, I was the introvert, Ralph the extrovert. He loved to go to parties and stay late. I wanted to stay home or leave early.

So why have I turned into this gadabout who joins committees, seeks out new friendships at every turn, commits to projects without thinking?

FEAR is the word that pops into my head.

Our life together, Ralph’s and mine, could so easily become a constant retreat from the world. And to be honest, I feel drawn to drift along on Ralph’s rhythms. To rise late and go to bed early. To spend my day not doing much or talking much.

What I fear is the attraction I feel to downshifting with Ralph.

A lot of dealing with a spouse with cognitive impairment revolves how much to accept, how much to fight and push back. I cannot see into Ralph’s brain or read his thoughts. I understand he is viewing the world differently these days and that his needs have changed. But we don’t really talk about it. I sense he doesn’t want to, and I am not eager to press. All I can do is to [try to] accept who he is at the moment and not make unfair demands.

Because Ralph has a reason, an excuse, to withdraw from more active engagement with the world. (And dementia activists aside, he has made that choice.)

The problem is that sometimes that withdrawal is scarily appealing to me. Is that appeal innate within the mentally and physically lazy woman I’ve always been? Or is it a sign that I am becoming that dreaded condition called “old.” Neither option sounds too good.

I’m not about to cut back on my friends and commitments in order to burrow into a domestic burrow with Ralph. But I am going to work for a little more balance.