Earlier this week, I wrote a message to the executive director of our local Alzheimer’s association asking for a Zoom support group for the early onset folks who are affected.
I had met a few other caregivers of those with young onset Alzheimer’s, and some of their loved ones were not interested in the normal support groups. It was hard to socialize with people 20 years older than them. So I was trying to encourage the association to form a group for these folks.
In addition to dealing with the emotional challenges of realizing the daily losses of abilities and progression of this disease, those with early onset are losing many other things all at once - autonomy (if no longer driving), purpose (if no longer working), and social interaction (especially with the prior two items).
Of course many of us aren’t prepared for early retirement. Emotionally or financially, Dave and I weren’t ready for either.
If Dave had his way, he would still be working and enjoying the friendships of coworkers. And if I had my way, I’d retire early so that I could give him more focused, full time care.
But that is not our situation (similar to others I’ve met). This means I work full time in order to make sure we have health insurance and the funds to keep the household running. And I try to piecemeal together activities that give Dave chances to socialize.
It doesn’t help that many of the men his age are busy with work and family. And that I can’t drive him to community activities (always only during the daytime since most folks with dementia are retired).
There are also probably some former friends who are intimidated by a peer who has been severely affected by such a hopeless disease. Nothing like a harsh reminder that there are no guarantees for a long and healthy life.
So instead it is finding long-time friends of Dave who will do FaceTime or Zoom calls, and finding a neighbor who can invite him over for an afternoon baseball game on TV.
Then on the weekends and sometimes evenings (if I don’t have work calls), it is going on errands or having short visits with friends. We don’t host nice dinner parties anymore (Dave is self conscious about his ability to use a knife and fork, and in the evenings he gets tired quickly). Short, easy going and casual visits with smaller groups of people work best.
Still, Dave is still an extrovert and will chat with whoever we see, even if we don’t know them. 😀 I (the introvert) would be happy to stay home and read.
Still, connection is a critical part of brain health. So this is a priority for us, however inadequately equipped I am to make it happen. I have to remind myself to enjoy the opportunities to hang out together, listen to music, and focus on peaceful, low-key settings that minimize stress or conflict.
Some helpful communication resources for caregivers:
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