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    • #11182
      Amanda
      Keymaster

      What do caregivers need most while they are taking care of a loved one with ALS?

    • #11224
      Debbie
      Participant

      Time out!

      • #11276
        Dagmar
        Keymaster

        Debbie, do you have access to respite care services in the area where you live? Have you used them and how was it?

    • #11359
      Debbie
      Participant

      I am pursuing the options. Dilemma? Spend as much time together as possible or have a breaK?

      • #12014
        Amanda
        Keymaster

        Debbie, how are things going? Did you decide to take a break and if so, were you able to get some respite care services. I’m sure that has been a difficult decision.

    • #12257
      Leslie Gafford
      Participant

      I can relate to the “time-out” concept, and the dilemma of wanting to be there for my husband, but wishing he was still busy with work and pre-occupied with projects so that every little thing I say or do doesn’t require a consult and communication…how terrible of me!  Also, I noticed just days after his diagnosis, that in certain circles, my expected difficulties are not the most desired topic of conversation – I immediately felt “different” from other members of a group of friends who have been my BFF’s since middle and high school; we get together basically monthly to have dinner and complain about simple stuff, but when it comes to ALS, they can’t relate, and they don’t know what to say or what to ask.  Caregivers need care, understanding, some portion of normalcy daily, and also a time-out!

       

      • #12260
        Dagmar
        Keymaster

        Yes, Leslie … both the caregiver and patient need time out.

        If your friends are not able to provide support, is there an ALS Assoc. caregiver support group in your area? Or even a generic caregiver support group? They will be the ones who can understand and offer helpful suggestions.

        Also, it sounds like your husband need something to do 😉 other than micro-manage you 😉 As a patient myself, I found it a big challenge to redirect myself (no longer able to teach, talk well, move with ease – – my life had been teaching fitness & wellness). Little did I know I could reframe it all into writing! (I never thought I could write well!) But here I am, 9 years later – – perhaps your husband can be convinced to try other things that will occupy his mind for several hours each day? My husband (caregiver) and I have found that my several hours on the computer give him time to do things around the house or even meet buddies for a friendly game of poker.

        Let me know if you need ideas – – I’ve written several articles about this both on my blog site https://alsandwellness.blogspot.com/ and Living Well with ALS columns. Hope this helps you.

    • #12267
      Leslie Gafford
      Participant

      Thank you Dagmar!  I am interested in reading as much as I can and figuring out the best ways to do the right things for John.  I feel like once we have a confirmation from Mayo in Jacksonville (next week), and John can quit thinking he doesn’t have it ( or if maybe he DOESN’T have ALS), that we can move forward to finding out the best avenues to take, the best attitudes to have, and the ways we can live with it for as long as we both can.

       

      • #12292
        Dagmar
        Keymaster

        Leslie – – safe travels to you both! Hope this visit will be productive and give you the answers you need. 🙂

         

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