I became trained as an Alzheimer’s support group facilitator while I was still the caregiver for my late husband. For me to cope with the Alzheimer’s caregiving journey, I needed to educate myself, understand the disease and connect with others.
Understanding the facts, potential issues and strategies kept me sane from the horrible emotion of losing the one you love a little bit each day. I took an online course through John Hopkins Hospital and another from a university in Australia.
There were online support groups, but people mostly ranted and told such awful stories that it was not emotionally healthy to connect with them. Everyone was at a different point in their journey and each journey is different.
It is not easy to join a support group. You have to open up yourself to others, which is difficult when you are feeling a lot of stress as the caregiver. Most of the time you are trying to bury your feelings, grieving in place for the loss of someone you love.
But I wanted to be there for others since I knew what it was like to do this journey on your own.
After my husband passed away, I continued leading our little group and it grew. It’s not large – about four to six people at different stages on their journey. I came to care about those in my group as family. For some, I was also their advocate for their loved one in the nursing home.
I became especially close to one dear lady in her 80’s who attended my group with her son. She had taken care of her husband for ten years at home but could no longer physically manage his care.
I visited her husband in the nursing home. He was always happy and cheerful, reminding me of my dear late husband Bob. I took all of Bob’s baseball hats to the memory care unit, since the guys were always losing theirs.
It came time for my friend to decide about hospice, and I encouraged her to make the transition. Her husband was very social and loved the extra attention that hospice provided. The hospice staff even created a special Valentine’s Day dinner for them with candlelight, chocolate candy and music in a private room at the nursing home. He eventually graduated out of hospice and was back in physical therapy before he died.
Sitting in church at his funeral were all my friend’s great-grandchildren, wearing baseball hats from their great-grandpa. I realized they were Bob’s hats – the ones I had given to the memory care unit. It was like Bob was sitting beside me, and I knew he would be happy.
I have traveled the death journey with three members of my support group. Now I encourage them to go to a bereavement support group, which I also attend.
On the third Wednesday of every month, I meet with my Alzheimer’s support group. I always bring some cookies I baked that morning.
Sometimes we laugh, sometimes we cry, but we are always there for each other. Just having someone else who sort of understands – because each journey is so unique – is comforting.
God’s work, my hands. A little comfort and support for the noble role of caregiving.
Jill Ballard was a caregiver for her late husband Bob, who was diagnosed with Alzheimer’s in 2010 and passed away in October of 2015. Jill was named Caregiver of the Year by AARP in 2015. She lives in Cannon Falls, a town of about 4,000 people in southeast Minnesota.