Caregiving: How long can I do this?

Caregivers shouldn’t lose sight of their own needs.

When was the last time you listened to birds singing? Or noticed tree leaf buds bursting open on a spring day? Or enjoyed the laughter of children?

Can’t remember? That may mean you’re caring too much for other people and cheating yourself out of living your life. You also may be cheating yourself out of your health. Caregiving can be exhausting — emotionally, spiritually and physically. Of course, you want to do what is right (and you are) but how much is too much? And when you realize that it is too much, where do you turn for help?

The following scenarios come from the people I interviewed for Minding Our Elders: Caregivers Share Their Personal Stories. They tell of caregiver exhaustion — the toll caregiving can take.

Diane’s Story – Giving Until It Hurts

Diane and her husband wanted to keep her husband’s aunt in her own home. They had promised to do so years earlier, when the aunt had said, “Don’t ever put me in a nursing home!” So, when the aunt became ill and incapacitated, they hired 24-hour in-home care. The only problem was that, as we know too well, life happens. So do holidays. That is where finding people to fill shifts can be a problem. And one Christmas, Diane nearly gave up when the scheduled workers bailed.

“It didn’t help that I had injured my knee at work and needed surgery,” she said. I found the floor at (the aunt’s) house better than the couch, so I was sleeping there. About three o’clock in the morning she hollered, ‘Anyone out there?’ I dragged up from the floor to see what she wanted. ‘Can I have some water?’ She keeps a glass of water by her bed, but I went and got her some more, and then tried to get back to sleep.

“I had only just fallen asleep again when she cried, ‘Do you think I could have some juice?’ Then she was yelling, impatient because I was taking so long getting up off the floor! I got her the juice, and barely got back to sleep, when she hollered again. By then it was about 5 a.m., so I just stayed up.”

Diane knew she was compromising her own health to do what she was doing – but what choice did she have? Sometimes you’re up to bat and you just do it. But long term? That’s when the real damage is done.

Michelle’s Story – Coming to Terms With Her Mortality

Michelle had been the primary caregiver for several elders in her family. Taking care of her beloved step-father prior to his death was the last. She also struggled during all of the years of elder caregiving, to help her bi-polar son. Michelle was still trying to recover when I interviewed her for Minding Our Elders. Her closing words to me were: “The channel running through all of this was my son’s problems. And then my own health. I’ve been diagnosed with clinical depression. It has all taken its toll.

“I still wonder if I made the right decisions. When you’re young, you don’t think that you’re going to grow old and die. You just don’t realize all of this. If I knew I was going to die – as Mom knew – would I do anything different? If I knew that today was my last day on earth, how would I live?”

Losing Yourself by Caring for Others

Diane and Michelle are good, decent people who wanted to help others, especially those they cared for. But they, like most caregivers, often forgot to love and care for themselves. The promises made in days gone by, dusty now because circumstances have changed, can chain us to unrealistic expectations. We make promises when things are good, only to find, years later, that keeping those promises could kill us.

The numbers of ailing elders a family can pile onto one caregiver can be daunting (thus, my 20-year stint as a caregiver). Yet we keep doing and doing and doing. We keep caring for others and ignoring ourselves. We keep saying, I can do this one more day. Just one more day. And another. Until, after years of self-neglect, we discover the breast lump or have a heart attack or stroke. And then the elders we were caring for need to go into a nursing home, because we can’t be there for them. Worse, we can’t even be there to help them adjust. We are too ill.

How Caregivers Can Care for Themselves

Is this what they’d want for you? No. Put yourself on your list of people needing care. And don’t put yourself last. Look on your state website for your State’s National Family Caregiver Program (yours may have a slightly different name) and make some contacts. See if your local Area Agency on Aging can help. Keep searching until you find someone who can help your ailing elders from time to time, so you can sit on a park bench and listen to a bird sing. See tree buds burst into leaves. Hear – really hear – children laugh.

When you go back to your elders, refreshed, with a lighter heart and maybe a story or two, you will all be better off. Even if they complain that the respite worker didn’t make the tea right, or kept the window open too wide – even then – you will all be better off. Because then, you may have a chance to stay healthy and vital, so you can continue to take care of your loved ones.

We’d love to hear about your ideas and experiences on caring for yourself while caring for others. Please provide your thoughts below in our comments section.

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Renae Feb 19, 2013 5:36pm
Caregivers Retreat! After a few family members had been caring for my grandmother for a few years, we were told at the Alzheimer's support group we attended that we needed to remember to care for ourselves. Four of us went away for a few days to "regroup" and it was awesome! That was in 2000. My grandmother passed away in 2005 and we still go out on our Caregivers Retreat every year. It's now a way for us to look back at what we went through, laugh about the funny things grandma did, cry about the things she could no longer do and just cherish our time together.