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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.
R eflecting 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
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