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    • #12266
      Amanda
      Keymaster

      I think every member of this forum understands the need for a “Time Out”.  The progression of ALS various from person to person as we all know. Some experience rapid changes and have to adapt quickly and often. Others experience a more gradual decline and continue doing the things they’ve always enjoyed for years. Regardless, ALS takes its toll on everyone involved both mentally and physically.  Caregivers and pALS may feel overwhelmed, even depressed at times. We all need a break from time to time, and that is normal and ok!

      When I was taking care of my father I was lucky to have my step-mom, sister and step-brother all pitching in. My father’s initial decline was very slow and he continued to live much like he always had done. A few years in, he had difficult going up and down the stairs to his basement or walking out (about 2 football fields) to his pond to feed his catfish.  His last month was very different. He became ill, and then declined very quickly over a few weeks. He started to get sick one evening, and was in hospital bed in his living room for his last 3 weeks.

      Although we had support from Hospice and the ALS Association, it was still overwhelming. I wish this forum had been online 6  years ago and I could reached out to our members. I don’t think I needed advice, or for anyone to explain what was happening, as my father was not the first in our family to have ALS. I do think just communicating with non-family members who “got it” would have been a great support! I think hearing  about other peoples experiences, especially when they use humor,  is helpful.

      I think we all need a time our or break from time to time. I came across this website today and I thought it was had some good insight for caregivers. https://strengthoflove.org/tips-for-als-caregivers/   Take a look at it and share your thoughts. If anyone has any other ideas or suggestions for caregivers please share.

       

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