Will guilt keep me from doing what is best for my Alzheimer spouse?

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I met Vickie in Your Father’s Mustache, a sing-along place in Greenwich Village 46 years ago.  She had long dark hair and wore a poncho like Clint Eastwood in Fistful of Dollars. She was singing and swaying with such joy. She had the kind of face you could look at the rest of your life.  I noticed her eyes were different colors.  One was hazel and speckled with green, and the other a cloudy blue.  She asked me, “What do you do?”

“I’m a priest.”

She laughed uncontrollably.  That cinched it. 

We walked around the Village for hours.  It was a crisp October night when the air is so clear you can see the veins on the leaves of a tree a block away.  Vickie told me about her cloudy blue eye, how she had fallen on a glass rabbit when she was a baby and the glass slashed her eye and blinded her.  She told me how when the kids played games she was always the bad guy or the monster, and that as she got older, adults looked at her and recoiled.  “All I ever wanted,” she said, “was to look like everybody else, or maybe find a prince who would love me like I am and we’d have kids and live happily ever after in a house with a white picket fence.”

I told her how I’d spent 12 years studying to be a priest and now after less than three years I was thinking about what it would be like to marry and have children. “Sometimes, when I wake up, I just lay there and look at the empty space next to me and think how wonderful it would be to wake up and see someone I love.  Someone to hold and share life with.  I even prayed to God once, if he’d let that happen, it would be okay if she got sick and was dying before I did – I’d take care of her and love her right to the end.  I promised God, if I break my commitment to being a priest, I will never break my commitment to her.  Does that sound crazy?”

“My Mama once told me,” she said, “‘When you meet the right person, you’ll know and you won’t have to ask.'”

A year later on a rainy October morning we married in St. Mark’s in the Bowery, with just a few friends and a handful of street urchins who came in from the cold and we invited to stand with us around the altar.

Now 46 years later Vickie has advanced Alzheimer’s and I am fulfilling that commitment of taking care of her and loving her right to the end. Right here. In our home.

But there is a problem: the damn stairs and her lifelong habit of falling down.

I remind her to hold onto the railing when go down the stairs. I walk down backwards in front of her just in case. That way, I guess, we can both tumble down like Jack and Jill and break our skulls together. I haven’t thought that one through.

I also have not fully thought through the alternative of a full-time Alzheimer’s facility should it ever come to that.  Right now Vickie goes to an Adult Day Care Center from 9 to 4 on Monday through Saturday. It’s a lovely place overlooking a waterfall where the Mianus River flows into Long Island Sound, five minutes from home. Six aides, along with a nurse, a social worker and a program coordinator look after about 50 women and men with Alzheimer’s or other incapacities or just need company from 9 to 4. They socialize, have visits from schoolchildren, care dogs that nuzzle up to them, mini-concerts from local artists, and if they can, take field trips to the beach or museum. It gives caregivers like me a chance to do their work or just get a break. She likes it there and Vickie, always the helper, looks after other ladies as well, holding hands as they walk.

The Adult Day Care Center is covered by Long Term Health Care Insurance which we fortunately have. Families who don’t and can’t pay the full fee are given subsidies. The United Fund is a major donor.

This right now is by far the best life for Vickie: to be at home with me and go to the Center during part of the day.  I dress her, bathe her, feed her, and clean up when she has accidents. That is no big deal. But Vickie has also suffered occasional seizures, epileptic in their intensity, and fell hard when they came. Oh, how that scares me! I put up a kiddy gate in the upstairs hallway so she won’t go near the stairs when she gets up in the night and I don’t hear her. She takes Dilantin for the seizures, a medicine that can make her zombie-like. We have to get regular blood tests and keep balancing the dosages. But all of that is manageable.

Will the day come when I have to do what I don’t want to do, what I promised I wouldn’t do: put Vickie in an institutional setting 24-7?  I’m one of those OCD types who like to be prepared and so I did make it my business to check out the two best facilities near us just to know.  One is an Atria facility with a staff that has been there for many years and takes care of only 18 people in a lovely setting. The other is a large institution that also has nursing facilities, serves the town, and has a high State rating but a whole lot of patients. Of course there are pros and cons to both, but like Wrigley Field I prefer the friendly confines of the Atria.

Most of all, I don’t want to do it. I made a promise. I want to keep it. I want to take care of Vickie here, in our home, till death do us part. But I am 74 and she is 68 and I know the day may come when I can’t help her up and down those stupid stairs, that her health will deteriorate, that mine will too, and that she may be better off in a full-time institutional setting that has the same structure and activities as the Adult Day Care Center.

What would stop me from doing that? Guilt. Fear of doing wrong by her. The anxiety of not being in control.  I say now, “Nobody can take better care of Vickie than me.”  Will I be able to say that in three years, or even one year? I may, and I may be wrong for thinking that, and would be wrong for keeping her home. Is there a way to make it work here, or could that someday be an unloving choice? Anxiety works all ways.

For now, all I can say with conviction is that what we are doing now is best for right now. The Adult Day Care Center is a bridge that fills the gap between home and a home.  I am hoping it will be a bridge too far. But my heart trembles every time Vickie stumbles.

Michael Leach, 74, is publisher emeritus and editor at large of Orbis Books. He works at home in Connecticut.

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