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    • #12925
      Matt Lafleur
      Keymaster

      First off, a huge thank you to all care-takers. You guys are more appreciated than words could ever convey.

      Let’s talk about the dual realities you live with: both the tenderness and love in your actions, and the sadness you may feel watching FA’d progression. What helps you focus on hope and remember that you are appreciated?

    • #14422
      Clester
      Participant

      Well I’m back. After literally losing everything I had. Business, retirement, boat, etc. Reached out to her family for help and it fell on deaf ears. Also had a small stroke in December. Bought a small camper and basically rebuilt it to be wheelchair accessible with a heavy duty fold out ramp. We have been living in it now for over a month. So we can be together. So far it’s working out pretty well. Attached a Hoyer inside it that swivels to get her on the toilet and onto the bed. Everything works off of propane or solar. Even have a small washing machine. Spent several weeks in Michigan’s forests. (free to camp in national forests). It has been good for both of us. We get to be together and she has been able to cut her blood pressure medication in half and being diabetic, she has reduced her insulin by 5 units a day, reduced her need for as much pain medication. She says it’s been the most fun she has ever had. Meeting new people seeing new places etc.
      For me it’s helped me mostly recover from my stroke and let’s me be with the love of my life.

    • #14518
      Clester
      Participant

      People and even close family have not even a tiny clue as to what it takes to take care of my wife all day every day, not even the slightest of a tiny clue. And worse yet no one even cares enough to find out.
      Even her own daughter that”took care” of her for a few months while I was away doesn’t have a clue. Her idea was to keep her in her room, at times only allowing her to go to the bathroom once a day, not eat like she should or take her medication like she needed etc. Out of sight, out of mind, is how most see it.
      The last home aide she had stole a bunch of her medication and some of which the Dr refused to replace even with a police report and the word of the home care aides manager. I had to deal with all that even though I wasn’t even there at the time…. Cause no one else gave a crap.
      Her family looks at me like I’m trying to take her away from THEM and cause THEM problems. They are truly mentally challenged/evil to say the least.
      Since the Dr tried to kill her in almost 4 years I have been the only one to take care of her ostomy bag. When I was away her daughter did do it for a few months because she Had to. but before that no one even cared enough to even think about it much less offer to find out.
      My wife has it a lot worse than most and I have to deal with it all day every day no matter what. Even when I’m ill or hurting…. I’m there. Even when I had my stroke and my hernia I have been there all day every day. The reasons I had to leave is 1-her daughter invited a drug dealer to live in the house against our wishes(who is still there) and her daughter let’s the dogs pee and poo on the floor every day and I confronted her about the stuff and even let my wife’s parents know what was going on and it all fell on deaf ears. My wife (due to some of her medications) has to get drug tested nearly every month. The house smells like pot and ammonia from the dogs every single day. At times you can smell the pot from outside even. Only so much I could take so I left. Eventually found our trailer and made it wheelchair accessible for my wife and she is back with me and she is doing much better… Considerablely lowered her insulin and her cut one her heart meds in half etc.
      I could go on and on about all this but I think you get the gist of what I have been going through to be there for my wife.

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