ARTICLES / Caregiver /
Life After Caregiving /
By Sandra O’Connell
The only way for me to survive is for the two
people I love the most to die.” When I wrote
those words, I was unable to foresee a future
without the endless demands of caregiving. At
the time, my beloved husband, Rev. Ralph Minker,
and my mother were each suffering from a form of
dementia. He was diagnosed with Alzheimer’s
disease at age 69; Mom had vascular dementia,
not uncommon for someone in her ninth decade. In
the midst of the great balancing act that is the
caregiver’s reality, another kind of life seems
impossible. And when it is over (YES, caregiving
does end), there are new challenges in finding a
life not consumed by your loved one’s illness.
The intense pain and anguish of those years is
behind me now. A “new normal” has emerged from
the days when caregiving ended. Now I find
contentment, if not joy. I laugh more than I
cry. And at last, I have recovered my health.
The journey has not been a straight line.
Detours abound for depression, resentment,
loneliness and grief. Finally, there come
moments—hours and then days, and at last, weeks
and months—when the stress of those years does
not dominate my life. Perhaps my experience will
help those trying to find their way to a new
normal after being a caregiver. There is no
right or wrong way—each journey is individual. I
only suggest a few guidelines to adapt as your
FIND YOUR OWN WAY TO GRIEVE
The overwhelming feeling of most caregivers in
the initial stage of loss is not grief, but
relief. When my husband died, the days of
repeated questions, skirmishes over meals and
getting dressed, the sadness of watching his
growing confusion, and the nights of interrupted
sleep ended. For caregivers of someone with
memory issues, relief will often trump grief.
The person you once knew has been fading away
for several years. With illnesses such as stroke
or cancer, there is relief that the physical
suffering is over, mixed with your loss. Most
approaches to grief counseling don’t cover the
unique feelings that come after years of
I did not find it particularly useful, although
a few of the books did offer helpful nuggets of
advice. But then, so was lying on the couch in a
semi-catatonic state for hours on end, although
after a while that did get boring. It helps to
not add guilt over feelings of relief to the
grieving process. Eventually the pain of grief
abates. Here are my suggestions to help the
- Write in a journal
- Talk with friends
- Go to a support group
- See a counselor
- Find solace in your faith
- Cry as you need to
Grief, however, does not vanish. Occasionally,
without warning, like an errant wave, the pain
of loss will tromp you. Each successive wave
tends to subside more quickly and leave less
REGAIN YOUR HEALTH
Your body has most likely paid a price for your
turn at caregiving: high blood pressure,
incipient heart problems, rising sugar levels,
weight gain (or loss), poor sleep and depression
are among the calling cards it may leave behind.
Now is the time to put YOU at the top of the
priority list. Even if you sought support, went
to yoga, took walks and had breaks, the stress
of long-term caregiving wears away at your
psyche and your body. No one with any real-world
experience will deny what the researchers have
well documented: long-term caring for a person
with serious illness is a source of chronic
stress, which is not good for your health.
No need to attack everything at once. I set
small goals for weight loss and a moderate
increase in exercise. After three years of
effort, which included multiple ups and downs
(and losing 30 pounds), I was able to stop the
cholesterol medication and relinquish
anti-depressants. Each success fueled my ability
to be more active and take on a new challenge,
such as volunteering at a local museum. In turn,
feeling healthier gave me enough energy to do
what is truly healing: engage with my community,
develop new interests and friends, and spend
time with people who care about you.
BUILD A NEW NORMAL
After the death of her husband and daughter,
Joan Didion wrote in The Year of Magical
Thinking, “I wanted to scream. I wanted my
husband back.” Magical thinking, indeed. We all
want our life back, the life we had before
cancer, before the stroke, before ALS, before
Alzheimer’s. Building a life with meaning and
relationships is the challenge faced by each
person after caregiving. Accept that it will not
be the life you enjoyed before the illness. If
you are still working, your time will quickly be
consumed by the rhythm of daily life. You are
changed in some ways.
While not faced with reconstructing your life,
you should pay more attention to your own needs.
For others, post-caregiving will involve major
change, such as dealing with reduced finances,
perhaps moving to a new home or new city.
Take the time to make these decisions with care.
Focus on what you want and need, not others’
expectations. To re-engage with life, ask
yourself what would:
- Offer a new challenge?
- Make a contribution with the new skills I
- Not ask too much of me at the beginning?
- Help me to meet new people?
- Be fun?
Eventually, day-by-day and step-by-step, a new
normal will emerge. The experience of caregiving
will always be a part of who you are, but the
experience needn’t define your future.
AMA Caregiver Self-Assessment Questionnaire
Bereavement after Caregiving, by Schulz, Hebert, and
Boerner. Pamphlet from National Institutes of Health
Alzheimer’s Association Caregiver Center
Sandra O’Connell was the
caregiver for her husband for 13 years as well as
co-caregiver, from a distance, for her mother. She
has been a member of the Speaker’s Bureau of the
National Capital Area Alzheimer’s Association for
more than 12 years and has given dozens of
presentations to business and community groups. She
now enjoys an active life in Ashburn, VA. Sandra may
be reached at SOCauthor@gmail.com.