From The Program Director  

Dear Readers,
Men and Caregiving. Sounds almost oxymoronic, although studies show the numbers of men providing care to a relative has increased. Even so, our reports tell us only 20% of our callers to the Helpline are men. Too many are suffering needlessly, stoically bearing the powerful feelings of loss, frustration, anger, regret, love and sadness that are a part of the emotional life of an Alzheimer’s caregiver.
Reflecting on the men I have known who have provided care, there are a range of experiences:
  • Paolo who cared for his brilliant, charming, and beautiful 56-yearold wife, watched helplessly as she became more dependent and eventually made the difficult move to a care home in another state. At first he refused to believe anything was wrong, and when faced with the irrefutable evidence, he boiled in rage over the injustice of it all. Theirs was truly a storybook love, now shattered and strengthened by this disease.
  • Joseph, an elderly Holocaust survivor, caring for his wife, asked one of our staff members how to buy a bra for his wife, and how to cook a pot roast; things he had never done before.
  • Mark, who, as an only son, cared for his dad, Neville, an erudite professor of English Literature. He agonized over his care and eventually brought his father to live with him in Vermont when long-distance caregiving no longer was sufficient.
  • Will, who lovingly cared for his wife, always referring to her as “his bride” as he had for their over 50 years of marriage. Alzheimer’s nearly broke this strong, gentle man who watched as the woman he loved disappeared into a fog, going through some of the most tortuous presentations of the disease: Venomous verbal attacks, adamantly insisting on doing the bills when she could no longer write a check; sleep disturbances that kept them both up, and her endless, exhausting confusion and repetition.
What helped all of these men was the support of their local Alzheimer’s Association. Will, now 90, recalls that the best piece of advice he got was from his support group leader, who asked him if he would let a four-year-old make decisions for herself. That helped him “get it.”

Paolo said going to the support groups and education meetings, learning about the progression of the disease, understanding what was expected helped him survive. He was still profoundly sad, but he was surviving.

Mark met other sons who helped him understand his situation, and learned about care options and residential care facilities from the Chapter and his support group members.

We know some men are uncomfortable in the caregiving role. Sons who find it too painful to see a mom or dad decline often pull away, leaving the caregiving responsibilities to a sister or sister-in-law. They might help with the information gathering, or legal and financial planning, but they can’t participate in caregiving. I urge you not to judge them too harshly, and to see this behavior as a reflection of the depth of their pain.

Instead, we wish they would call us. Talking to a caring professional who understands does help. We help develop strategies to care for a relative, and to live with the sadness and disappointment. We help the family caregiver survive and, as an outcome, perhaps even thrive. As a caregiver once told me, “I didn’t know I had it in me. My wife was always the care provider. She would gladly do this for me. I owe it to her and to us, to do this for her. ”

We can help. Call us at 1-800-272-3900, 24 hours a day.

Note: Names and details have been changed to protect the privacy of our clients.
— Jed Levine
Executive Vice President,
Director of Programs & Services