Jul 23, 2010

What is it like being an Alzheimer's caregiver? I Found Out

By Kristi Huffman

Sixteen years ago the Lord led me to something I never wanted to be -- an Alzheimer’s caregiver.

I was a licensed practical nurse and I wanted to be a hot-shot cardiac nurse, with all the excitement and “glory” that I imagined goes along with it. The despair I felt and sense of failure as I began my new caregiving experience I now am ashamed of.

I had no idea God was going to show me indescribable joy, intense frustration, humbling honor at being included in such an intimate time in someone’s life and a do-or-die pursuit of justice for the special population I was caring for.

Nothing compares to the feeling of a job well-done when a caregiver hugs you with tears in their eyes for giving them a much needed rest. Or when a couple asks you to sit with them to answer questions about what they will experience as the dementia disease progresses; to hold them and cry with them as you confirm what they already know, that there is no cure.

When a participant tells their caregiver that they aren’t ready to go home yet because of the activity they’re involved in or when we are able to preserve someone’s dignity while taking care of their incontinence situation; all these things and much more are of the utmost importance, and it’s why we do what we do.

I have been a caregiver for family members and now a professional caregiver.

I’m familiar with the guilt, frustration, sorrow and sense of loss caregivers’ experience. I’m also familiar with the joy, sense of humor, love and partnership that is on the other side of the coin.

I knew a man who had to finally place his wife in long term care. I wasn’t certain if she knew him but I was certain of his unchanging love for her. I would watch him sit with her, cheek to cheek and sway while the music played. Her face was permanently set in an open-mouthed stare but I knew he was only seeing the girl he married. How does one say goodbye to a spouse that’s still there?

The person they knew and loved is now buried deep and a stranger is at the surface. I knew three ladies whose husbands were in my care. They called themselves “widows in waiting.” They felt they were widowed once when their husbands no longer knew them and would be widowed again when their husbands passed away. These ladies did have joyful times with their spouses intermingled with the sadness of what the disease rendered. To help them through the journey they used the resources available; caregiver support groups, adult day service, home bath aide and then eventually, long term care.

I have realized after all these years the loss of what could have been needs to be mourned and the joyful times in the present need to be sought and celebrated. To the end we all need to be loved, touched, tended to and valued.

Caregivers need to be loved, respected, valued, and supported in their decisions, and allowed an array of feelings without being judged.

We’re all in this together. At anytime we could become the one to be cared for or the caregiver.

Kristi Huffman grew up in Oak Harbor, WA. She received her license in practical nursing 25 years ago, worked in long-term care, home care, and now in adult day respite care. Kristi is an executive director at North Whidbey Caregivers’ Cove.

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Original content Kristi Huffman, the Alzheimer's Reading Room