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    • #21877
      Dagmar Munn
      Keymaster

      Family caregivers — the spouses, partners, family members, friends, and even neighbors who care for someone with ALS all have a challenging responsibility that often goes unnoticed by those outside the ALS community. Being an ALS caregiver can include facing stressful events, changes in symptoms, and other unexpected challenges. Self-care is vital but often is neglected due to having to be on duty day in and day out.

      So, with no sick days, vacation, or weekends off, how do you fit in a much-needed break for your mind and body to recoup? What are some of the best “breaks” you experienced? Do you have any tips for new caregivers on what to do and not do?

    • #21925
      George
      Participant

      I have been caring for my partner for  one and a half years now, 24 hours a day, 7 days a week.  early on it was easy since he maintained most of his functions and I was basically support.  This elephant in the room has taken more space than we are comfortable with and now the care has become overwhelming.  His legs, arms and hands are basically gone and he is living 24/7 on a bi pap machine.  The routine is now help him to the side of the bed, dress him, lift him into his wheelchair, move him to the living room, medications, bi pap set up, bathroom,  breakfast, prepare, and clean up, and make sure he is safe.  as his condition became more challenging, the day became more filled with his needs and again it was only me.  I learned that the only way I was going to get some personal comfort was to get him to bed at night and go to my safe space, baby monitor on, and escape into a book.  He is now at the point where he needs more attention.  We were blessed by having a wonderful women respond to our outreach regarding being his aide.  My partner loves her, she is experienced and I am beginning to feel like I can let go of some of his care.  I now take our dog for long walks without worry and enjoy the beauty of spring and the sound  of birds.  Sounds crazy but I believe it is the sound of continuum.  As the Aide and my partner become more connected I plan on going to the beach with our dog and sitting for a few hours just smelling the air and watching the waves.  We all know how this is going to end.  The elephant in the room will leave and we will be devastated.  But as we will mourn we will also have to start to heal.  We have been together for 53 years.  I accept that it will be very, very hard, but I also know my partner will want me to live.  I hope I have the strength to carry out his wishes.

      • #21930
        Dagmar Munn
        Keymaster

        Thank you for sharing your situation, George. It sounds like you are finding ways to take care of yourself while taking good care of your partner. 53 years together is certainly a milestone. Best wishes to you both.

        • #21952
          Susan
          Participant

          I wish my partner, John,  of 11 years could have a break! I have lost the use of my legs, I fall a lot, most recent, broken sternum. I am in a wheelchair but fell during a kitchen sink mis hap. He is 24/7 on duty, doesn’t sleep well, or eat, he’s too busy caring for me. I have a large family, no help! My older Sister lives directly across the street but she claims that she can’t help because she can’t watch me die…

          we are trying to move back to Oregon from California, our home state, because we have Family and friends that would help, there is just a housing shortage, nothing to purchase! So we are in a sad way, John gets easily frustrated with me, he says he doesn’t mean to be that way, he is just exhausted. Please pray for us that we can move soon, thank you everyone 🙏

    • #21935
      Tammy Nolan
      Participant

      I am lucky to have a lot of family  with medical experience nearby who are willing to help.   I am working from home mostly, but still go in to the office once or twice a week.  I get a family member to come and sit with my husband on those days.  It gives me a little normalcy and a break.  Sometimes we pick up food and go to a park for a picnic, though his appetite is severely suppressed, he likes to get out some when he feels like it.   His progression has been fast, his walking has become very difficult so he rides a scooter when we leave the house. His power chair has been ordered.

    • #21944
      George
      Participant

      As an update to my earlier post, in only one week Jon’s caregiver has become a member of the family and they are good buddies.  I believe God sent her and it was meant to be.  She cleans him, bathes him and is so, so comforting.  Both of them have decided that I am not needed for the early day care and that is fine by me.   For the first time in over a year, I was able to hop on my bike and ride for about 30 minutes in the country air.   When my phone rang and it was my partner, no emergency, just where are the wash clothes.  He has always been that way.  At the moment I am living in a gift of free space and I am enjoying every second.  I know full well that that peace can change in a second.

       

      • #21945
        Amanda
        Keymaster

        George,
        That is wonderful to hear for the both of you.

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