Cindy Cox
Forum Replies Created
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Shannon ~ Words cannot express the pain you are feeling right now! You’ve lost your right/left arm, your friend and your lover! I’m so sorry for your loss and am afraid that I’m going to have to go thru the same thing with my husband when I lose him to ALS! I’m not sure that I’ll be able to let him go, but I’ll have no choice! I don’t know what I’ll do, which is what you have to be feeling too! Don’t blame yourself for anything! You did the best you could, with what tools you had! ALS sucks! I’m praying for you and your family! Best to all of you! Rest in peace Kenneth!
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My self-care plan as a caregiver to my husband tends to be ever changing, and changes fast. As the disease runs it course, my husband’s needs change and so then does my self-care plan!  Several weeks ago I could leave our home and enjoy my ritual 2.5 mile walk each morning, but as his symptoms progress and he needs assistance more and more, I’ve had to forgo the walks in the morning. Right now being summer, it’s too hot out once he doesn’t need assistance and can manage on his own for an hour. The last time I went for a walk, as I got back and walked through the front door I heard him yelling for me needing to get up and onto the toilet, much earlier than normal, so it was a little traumatic for him and I. He was getting frantic with me not being right there and at his “beck and call”! Working outside in the yard, as part of my self-care plan is tough too. I tend to hover like a helicopter, in and out, checking on him, interrupting what I’m doing to ensure his needs are being met!
So as you can see, two examples of how I’ve had to change to adapt to ALS and it’s symptoms! Good thing I’m flexible, LOL!