Not the beginning of my caregiving experience but it is my first public blogging

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.

18 thoughts on “Not the beginning of my caregiving experience but it is my first public blogging”

  1. I look forward to following your blog. My dad had bvFTD and was diagnosed six years ago at the age of 67. Our journey is tragic and yet now I know all too common for this disease.

  2. Thank you gor your efforts. i am the spouse of a man who is 74 and has had symptoms since 1993 when he had his first MRI and all they could tell us wasn that he had a black spot deep in his brain. He was officially diagnosed in june of 2014 and now is in a locked memory care unit and cannot speak and is chronically angry and agitated.
    Live to hear what you have to share.

  3. I will be following this blog, and may be able to guest post on bvFTD and guilt for having a life after FTD

  4. Lewis, I much appreciate your posts as the caregiver for your wife. I too am early into the caregiving role to my wife who has yet to be be specifically diagnosed but has growing short term and long term memory loss, some delusions and loss of appropriate communications in interpersonal encounters.

    1. One of the mean tricks of Nature that two friends have loved ones with similar problems.
      Thank you for both reading and commenting.

      Lew

  5. Look forward to your blog, as I feel you have the right approach. I am caregiver to my husband who is 63 years of age and has had symptoms as far back as five years ago, diagnosed October 2016. I am not helpless, but very overwhelmed, angry and filled with frustration. Each day as everyone knows brings a challenge.
    Thank you
    Maxine

  6. Just found your blog via Facebook group. We are in the late stage. Husband has been non-ambulatory, non-verbal, and total assist since October, 2012. Most recent development has been some problem with swallowing liquids.

  7. Lew, I’m happy you got your blog started. I look forward to having your writings all in one spot. Makes it easier to read and reread. Thanks for doing this.

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