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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 own. 

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 caregiving.

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 process:

  • 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 damage.

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 acquired?
  • 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.

Resources:

AMA Caregiver Self-Assessment Questionnaire
www.Caregivers.Library.org
Bereavement after Caregiving, by Schulz, Hebert, and Boerner. Pamphlet from National Institutes of Health
www.ncbi.nlm.nih.gov/pmc/articles/PMC2790185
Alzheimer’s Association Caregiver Center
www.alz.org/care


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.



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