Our journeys in caregiving can seem very different from one another but have so many similarities and parallels. As I write this article, I am going to dedicate it to Lisa and James (you know who you are).
James passed away a few mornings ago after a life of always having caregivers. The special caregiver in his life was Lisa. Lisa attends the Caregiver Support Group at The Hub on Smith and has used respite services from the Family Caregiver Program to give her a much needed break.
Lisa and James are/were both in their 40s. James was a funny, happy young man with Down Syndrome and in the last years of his life, he acquired Alzheimer’s disease. This is not uncommon for someone with Down Syndrome. James loved and lived live to the fullest, his laugh was contagious.
Another caregiver that regularly attends our morning caregiver support group and receives respite services through the Family Caregiver Program cares for his wife with PSP. What is PSP? Progressive Supranuclear Palsy. It is the second most common form of parkinsonism after Parkinson’s disease and is often mistaken for Parkinson’s disease because both disorders cause stiffness and slowness of movements. Unlike Parkinson’s disease, PSP is characterized by falls at the onset of the disorder and also impairment of eye movements. Both PSP and Alzheimer’s disease have a buildup of a protein in the brain called tau.
I’ve mentioned only two caregivers with very different lives and yet when they are in support group they seem to have so much in common. One thing they both realize is they are not alone. The support of others in the group keeps them coming back. It’s interesting because often when I offer a caregiver support they quite often say they don’t need it as much as the next caregiver — and I have to convince them that we can help both of them.
Sooner or later, caregiving will touch us all. When a family member, friend or loved one becomes ill or disabled, we step in to help. This is caregiving and our journey begins.
As I mentioned earlier, Lisa cared for James. I’d often call or text her just to see how she was holding up and quite often amid her struggles she would say something that would brighten my day, when in fact I was trying to support her. Here is a piece of one of her return texts: “Thankfully, God has kept my strength up and I’ve only had a minor cry fit once…lol. If nothing else God has made sure I’m completely comfortable with all bodily fluids though this. I don’t remember asking Him for such tolerance training but apparently God felt I need it…so if you ever need to be cleaned up…I’m your girl.”
Rest in peace, James.
The caregiver journey has many peaks and valleys and as soon as you think you have things under control, it changes. Many of our caregivers are caring for someone with some type of dementia. In my involvement with the Alzheimer’s Association I often hear that Alzheimer’s disease causes anguish to millions of caregivers and family members. Few diseases are feared more. It is these caregivers who must face enormous responsibilities that they are seldom prepared to handle alone. We all dream of the day that we will find a cure for Alzheimer’s disease.
Please call me if I can be of support to you in your caregiver journey. Support group is every Monday at 10 a.m. and 5:30 p.m. here at The Hub.
Stella Montano is director of family caregiver services at The Hub on Smith.