I’ve been making posts in one single Facebook Closed Group for caregivers and people with disease (PWD) of a specific unpleasant central nervous system degenerative disease called Frontotemporal Degeneration. It seems that each of the variants of this disease and its relatives has spawned a raft of different support groups, each with its own tone and audience.
None of my posts were really about specifics of the disease but much more about how I adapted to being responsible for my wife’s care as she journeyed through this disease and I think there are things that I’ve written and that I’ve seen in the different support groups where I lurk that are useful to caregivers in general.
I don’t mean advice because every situation is unique in its detail. What I hope readers will get out of this is an understanding of how I and teh guest bloggers cope in their specific environment. I will resist complaining and I particularly resist giving advice, with one exception and I’ll give you that one single bit of advice later on.
I will be going back and adding most of my last year’s posts to this blog – at least those that seem pertinent to the general caregiver audience.
I realize that I am writing from one viewpoint only and so I hope to get some guests to write about experiences and places I know nothing about.
I am looking for guest posts on
- dealing with BVFTD
- the balance of life with having caregivers in the home
- dealing with guilt if one does have a life
- and other ideas as they occur or as you suggest..
Of course I’m wrestling with learning the WP interface so forgive ugliness for a while.
Thanks for reading. I would appreciate any comments or if you mention this log to any of your friends or relatives who might benefit from reading one man’s perspective.