On Friday, I and about 75 other caregivers had a lunch/ discussion with Colorado Senator Michael Bennett. The Senator asked caregivers to voice our frustrations, and to highlight what we saw as the worst problems we faced in caring for adult loved ones. It felt almost like a union meeting. Tearful caregivers were sharing their heartbreaking stories, and other caregivers called out support like “That happened to me too.” or “We gotta fix these problems now.” I had the urge to channel Norma Rae and jump up on a table and declare a caregiver strike. I felt powerful, and that felt good. The common denominator that all caregivers share is pain and grief, and we stood together united in pain and demanded to be heard.
We were in agreement on several problem areas for caregivers : 1. Respite care was very difficult to find; 2. We were all overwhelmed with the mountains of forms to fill out; and 3. Caregiving often created financial hardship. It is the complexity of our Healthcare maze that buries and suffocates caregivers under an avalanche of paper. Forced into this complicated thicket of thorns, no matter which way we try to escape it hurts. We are trying to help by providing care for our loved ones, but there are roadblocks everywhere. We get tired and need to rest, but options for respite care are scarce. Caregivers often suffer financial hardship because our work lives may need to be put on hold. We become sick, caring for the sick. As our 65 + population grows exponentially, there will be an even greater number of caregivers.
After the event I went to visit my husband Roger, who has Lewy Body Dementia. After caring for him at home, he is now in a skilled nursing facility. My caregiver role continues as I advocate and make decisions for Roger. Forgetting my other concerns , I focused my attention on Roger. I was able to engage him in a picture book about sharks and whales and for a few minutes we were on the same page.