The Mirage of Caregiver Support
This is a follow-up to my article “The Cavalry Is Not Coming.” It is meant to be instructive, without being overly dark and whiney.
Eight years into this journey, I am long past the realization that the Cavalry Is Not Coming. I am on my own in the care of my wife with vascular dementia. I have absolutely no expectations remaining that anyone, anywhere, is ever going to provide any level of tangible, meaningful help to me and my wife. I will have to carry on with this exhausting journey until one (or both) of us is gone.
I want to share several anecdotal experiences I have had in regards to the many mirages of help that appear in the desert of caregiving. If you are new to caregiving, hopefully this will help you lower your expectations a bit in order to avoid the disappointments I have encountered. Experienced caregivers will probably just nod in agreement.
1 – Our church. We had attended a neighborhood church for fifteen years prior to my wife’s dementia. We were also quite active and helped with many community programs. One evening, I was feeling defeated and just wanted to see what the church could do to help me in this crisis. I did not expect a lot – just maybe some sort of support. I called their prayer line and listened to a recorded message. It prompted me to leave my prayer request as a voicemail message. I poured my heart out for three minutes and left my contact information. No one ever responded. And I tried multiple times.
2 – “Get paid to take care of a loved one” commercials and billboards. If I only had a nickel each time a well-meaning friend suggested I call one of these providers. The fine print that friends never see says “If your loved one is on Medicaid….”
3 – Family and friends. Over the years, I have received numerous “How is your wife” and “How are you” calls and texts. These have dwindled to nearly none. I have one friend remaining that checks on me regularly – and I am ever grateful. No one else bothers much anymore, and when we do chat, it is easy to tell that they are simply weary of my caregiving woes. I am so sorry that my ordeal has outlasted most peoples’ depth of sympathy.
4 – Visiting senior companion. For about a year, we had a senior from a local non-profit come over and “sit with my wife” for two hours or so each Saturday. The idea was that I could get some things done and know that my wife was being looked after. As nice as that is, the visiting senior could not/was not permitted to really help with anything. If my wife needed to use the restroom, I still was on duty. If my wife was eating, I was helping. Basically, the “visiting senior” was just another reason I would have to get up early, and spend all the time needed to get my wife up and ready. It was easier to let the program lapse and just be on our own again.
5 – Meals on Wheels. Early in this dementia journey, when my wife was still able to be at home alone for a few hours, I had arranged for Meals on Wheels to deliver lunch. A side benefit was that they also considered their visit as a wellness check, so I could be away for a while. It all sounds terrific, but for someone with dementia, I learned that it just does not work. Sometimes my wife would simply not answer the door. (This is actually a good thing when you think about it.) When she did accept the lunch, my security cameras showed me that the person simply handed the lunch to my wife and left. There was no “wellness check,” unless just seeing my wife counts LOL. Lastly, I would arrive home and find that my wife had only eaten the cookie – the remaining meal was just sitting on the table, untouched. Fail!
6 – My wife’s daycare. This is a godsend. If you have access to an adult daycare, I encourage you to look into it as an option. I truly believe they care about my wife. However, they do not offer any classes/groups/programs for caregivers to learn coping skills. Each time they contact me, it is usually to give me yet another medical form for her doctor to fill out, or for some test or vaccine, or the billing department with my monthly four-figure invoice. A simple “and how are you doing these days” would go a long way. Sigh.
7 – Memory care homes. I have avoided them so far, but one never knows what the future holds. I have two on standby, in case the need arises. Simply put, these are places that you pay to “care” for your loved one with dementia. Even after this drastic measure, I really don’t know how much they will reach out to me to see how I cope with the loneliness, and the shock of my wife leaving our home. I have used respite twice, and the resulting emptiness wiped out any “rest” I was supposed to get. It was traumatic for me – but the focus was squarely on my wife’s care. I am grateful for that, but this is yet another area where caregivers are simply left twisting in the wind to deal with the greatest heartache of our lives.
Prepare yourself – you will most likely be able to find care for your loved one, but sympathy and care for you as the caregiver will be sorely lacking. There will be many mirages – glimmers of support for you – that will simply fade into nothing when you look closer.
Thank you all for listening.