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    • #17697
      Amanda
      Keymaster

      As a caregiver, what do you consider the most challenging part of your role? Are you struggling to handle the stress?

    • #17711
      Veronika Wuyts
      Participant

      for the moment, the most challenging part is when my husband feels depressed and deeply distressed because of how his life is shortend (even if like all of ALS patients, there is no end date known) and all what he will be missing when he doesn’t want to go yet. I feel powerless and would so much try to get the most out of the time we still have…

      The advantage of being a self employed business coach, is that I can make up free all the time he needs now that he can’t drive anymore. I work from home (not just now with covid) so that makes me mostly always available. I feel because of the stress very limited “bandwith” for work. Doing what I have done the last 10 years, coaching, is a relief and energygiver. Having to do new things like learning all the online stuff asks so much more energy, which I not really have now.

      how do I try to help myself:

      – I try to take time out for myself when the weather is fine enough and go for a bike ride on my new e-bike, which I love

      – talk with friends who are there for me. That works best when they reach out first. I find it difficult to start first.

      – I also see a psychologist every 2 weeks.

      – monthly ostheopathy therapist or shiatsu session

      – write in my my diary

      – we already looked into all the possible help tools so we know it doesn’t stop necessarily when his bodypart stops doing what needs to be done.

      that is what I try to do now… we are almost 1 year into diagnosis and 20 months in to onset. His arms are more and more affected (right arm about useless, just the hand, but fingers also weaker every day) right arm gets worse too. Impact on eating, dressing, washing, no driving anymore, Voice gets worse…

      For the moment we still manage without extra tools or external help.

      • #17774
        Amanda
        Keymaster

        Veronika, you have posted such good information! It is understandable and normal for your husband to feel depressed and distressed.  I hope he is able to focus on good things most of the time.  I know that is very difficult for pALS, understandable.

        I think you are showing great strength and knowledge about how to take care of yourself and others.  I wish we all would see a professional when we have life changing stressors. I know that isn’t everyone’s go to way to deal with stress, I just believe very strongly in mental healthcare.

         

    • #17818
      Jennifer
      Participant

      Hi I am new here.

      My PALS is my mom. She lives alone still and my daughter and I are in the basement suite to be close and help when and however we can. I work full time and also help my grandpa who also lives alone at 95 years old.

      I find the hardest part not being able to look ahead and be as proactive as I would like to be. My mom was diagnosed in October 2019 and is in denial. she went from we are giving everything away to deciding it’s not ALS it’s lyme. Lyme isn’t as bad because it’s treatable. I see the progression and want to take action to meet the next step instead of waiting until it hits and then scrambling to find solutions. My mom however insists she is going to get better, and even tells my daughter (16) that by spring she will be walking again.

      Our house isn’t wheelchair accessible. We had a stairlift put in and she is kind of getting around a little with a walker, but I know that won’t be for much longer. As she is currently unable to step up even a few inches she is no longer able to get in and out of the house at all and we are having ramps installed. Just a stopgap though as I don’t know how we would do the lift into a chair at the top or bottom of the stairs…

      She manages all my grandpas finances and is his executor and I am afraid of what will happen to him when she can no longer manage. She is not willing to discuss any of this and I am feeling at such a loss. I understand she is losing so much and has a need to maintain what control she can but I don’t know how to cope with all this either.

      My mom can no longer cook for herself so I have been busy trying to stock her freezer with ready cooked meals. It means after working all day I have come home and spent hours cooking, trying to get ahead of the need. Even when she finally does allow home health to come in they won’t cook, only heat food up. I just wish she would let them come and start helping.  She has been falling more, and as I said I work full time, last time she was on the floor for 2 hours before I found her.

      My mental health is struggling. I am doing the best I can but it just never really feels like enough. how do you find the balance?

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