The loneliness of the Alzheimer’s care giver

  1. Listen Bob Collins talks with Dr. Ron Petersen of Mayo Clinic

    December 23, 2015

When I fill in for Kerri Miller on Wednesday, I’m doing a segment on Alzheimer’s [update: see above].

If there’s a more despicable disease, I’m unaware of it. Perhaps that’s why you don’t hear a lot of politicians criticizing a huge increase in Alzheimer’s research.

“It’s perhaps some of the most encouraging news we’ve had on Alzheimer’s disease in several years,” Ronald Petersen, director of the Mayo Clinic Study of Aging and the Mayo Alzheimer’s Research Center, told the Washington Post. “This is truly very, very exciting in the field.”

If the future is bright — or at least: hopeful — the present is a nightmare, as evidenced by the story in the Milwaukee Journal Sentinel today of former Gov. Martin Schreiber and his wife, Elaine.

(Video link)

They have known each other since they were 14-year-old sweethearts. Theirs is a common story: A faithful partner carrying for a spouse who has slipped into the grasp of Alzheimer’s, never to return.

You don’t have to be alone, to be lonely, he says, exhausted from the rigor of caring for someone with Alzheimer’s.

Finally, he moved her to a memory care center.

Just after Labor Day, the Schreibers returned to the Lutheran Home. In a conference call with their children a few days earlier, they had discussed the move and decided it was the right thing to do.

But on the day itself, at the moment of leave-taking, he told her that he was going to Madison, a little white lie, and then he squeezed her hand and there were tears in his eyes.

“So, what should we do today?” a member of the staff asked Elaine, gently leading her toward the memory care unit.

As he watched her go, he replayed in his mind the moment when she left their townhouse for the last time. He had turned back to see the door still open, and his voice had failed him. He could not ask her to shut it.

“It was like closing the door on our life together,” he said.

About five million people have Alzheimer’s now. By 2050, that will rise to about 14 million.

Related: When Mom Has Alzheimer’s, A Stranger Comes For Christmas (NPR)

  • ec99

    Alzheimer’s is indeed a devastating condition. My brother’s father-in-law was an internationally-known scholar at the U of M. By the time the end came he had forgotten how to eat.

  • MrE85

    It would be wonderful if a cure/prevention for this awful disease could be found.

  • Gary F

    I had a friend died of a disease similar to Alzheimer’s at age 55. It was brutal. We’d sit and talk about all our friends and the good old days, but didn’t know who I was.

    • ec99

      A life-long friend of mine was recently diagnosed with Lewy Body Dementia, a condition similar to Alzheimer’s and with the same prognosis. It will be tough to watch it progress in a woman who was so vibrant throughout her life.

  • John O.

    I’m fighting back tears. Last week, I spent a day with my Mom and Dad in Wisconsin. The neurologist and psychiatrist are both 90+ percent confident Mom has Alzheimer’s. She’s 80. Dad’s 86.

    • crystals

      Wishing you and your parents the best in the days ahead.

  • Anna

    I often wonder if my mother had continued working as a middle school teacher and librarian until age 65 if she would have developed dementia later. There is a constant debate about getting mental stimulation in the form of a full-time job and/or teaching full-time as well as regular physical exercise. The more mentally demanding the job the better it is.

    She had dementia but unfortunately she knew what was happening to her until about two years before her death. The most devastating effect was her losing her ability to type and read. I can remember her sobbing because she could not remember how to type and she was one of those miracle stenographers who could type like the wind (80+ WPM) in the days before electric typewriters and word processors were the norm.

    My grand aunt on her maternal side had classic Alzheimer’s, memory loss, wandering, inability to perform activities of daily living, etc. I think it led to the death of her sister who took care of her until she could no longer provide the support she needed.

    My son is aware of my increased risk for the disease and we have already discussed the care that would be necessary should I fall victim to the disease. He saw what happened to his grandmother and I think it weighs heavy on his mind.

    My mother’s onset after knee replacement surgery and there is some speculation that general anesthesia is damaging to the aging brain, especially in patient’s over the age of 70.

    I intend to work until I am physically unable to continue. A recently broken ankle and knee problems have limited my ability to be more physically active but I do as much as my pain level will allow. If my insurance coverage remains stable, I will eventually have knee replacement done.

    The fact is, the ability to live longer is a risk in itself. We have a pandemic of the disease now because people are living much longer and develop the chronic diseases of old age which limits their ability to remain physically active—heart failure, osteoporosis, chronic kidney disease and hypertension and hardening of the arteries which increase the incidence of stroke and heart attack.

    When you consider the risks, who in their right mind (no pun intended) would want to live to 100?

    • ec99

      ” there is some speculation that general anesthesia is damaging to the aging brain”

      Could be. My grandfather had hernia surgery many decades ago, when they still used ether. He was never the same after that.

  • Jay T. Berken

    My Grandmother had Alzheimer’s, not to down play being physically disabled, but I rather have my mind then body. The last years, whenever I would see her, she would give me a split second spark in her eyes and then go dark. She wasn’t living; she was just breathing.

  • Bob Konz

    Thanks for posting this. I can relate to this issue as I know several wonderful and talented people suffering from this disease. Hopefully, research can find a cure soon!