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    • #22796
      Dagmar Munn

        ALS caregivers are special, appreciated and they always give-give-give. But there are times when caregivers need to take some time away from caregiving in order to recharge. However, life doesn’t always cooperate with planned days off for self-care, forcing many caregivers to push themselves to burnout and exhaustion. Yet just before that happens our bodies do send us signals – – by way of our actions or choice of words – – that it is time for self-care.

        In Betty Vertin’s column, “3 Signs That I Need Self-care as a Caregiver,” she shares the warning signs that she needs a break from caring for her three boys who have Duchenne muscular dystrophy:

        · She tries to control everything
        · She’s keeping score with her husband
        · She tells her boys how much she is doing for them

        Caregivers, what are YOUR three warning signs? What are some of your quick self-care remedies?

      • #22821
        Lanny Kohnhorst

          Even if I do need a break I would feel like I was lost without my wife with me (ALS at age 76)  I would also feel guilty not being there for her. I have no answers only an understanding boss and a few nearby folks that stay with her a few hours on the 4 days I must work, it is tiring and sleeping an hour up an hour all night certainly makes it worse. I have gone from a 40 waist to a 36 since my darling was diagnosed last February, a life changer is an understatement


        • #22823

            I am caregiver for my wife for over 5 years.

            Yesterday was the first time that I had a nervous breakdown , the only thought I had is to end this situation by ending my own life, I am not sleeping as a human being ( 3 Hours a day maybe) Not getting help from her Brothers at all not monetary help or mental help, They never said or ask can we help  you ? Do you need anything ? or how do you feel

            I feel like  Don Quixote fighting  for my wife medical insurance, Medications, Equipment ,O/T,P/T ,finding the some doctor just gave up on my wife,” put her in Hospice is the best way for you ”

            How can I give up on my wife’s who I married for 41 years .

            I can’t go shopping for food, only order on line , never get the right items. because my wife don’t like any Home care coming in to help, She doesn’t feel comfortable with stranger. And if I try to reward myself to a treat, she yell ,wtf you need it,

            She tries to control everything
            She’s keeping score with her husband

            So right not EZ when you. 70 years old and disable for more then 15 years

            I like to thank everyone for support  this blog. I pray for all of you .



            • #22854

                I can only imagine how all those things take a toll on you mentally, physically and financially. You mentioned not getting help from your wife’s brothers. I know that being a caregiver is overwhelming to say the least and asking for help seems like something you should not have to do. However, many times others are afraid to step in and offer help or just plain lack the awareness to recognize how much someone is doing. Have you directly asked them for help and told them what you need or what your wife needs? Also, I would encourage you to reach out to a counselor to help you with all of these emotions, especially since you had thoughts of ending your own life. There are a lot of counselors and other supports available online or via the telephone. That might be an option for you. Perhaps they could help you sort out how to tell your family what support you need and from whom.

                Is there a Hospice services or palliative care service available to you that might me able to provide you some assistance with shopping and time away for yourself?

                You are always welcomed to post questions and comments on this forum. You will definitely get support and encouragement.

                Gideon, if you need help reaching out to the ALS Association or Hospice send me a private message with the area you live in. I can look online and try and find phone numbers for you.

            • #22829

                As my partners primary caregiver for 2 1/2 years after his ALS diagnosis, I had to learn early on that I cannot control this and Jon, my partner will tell me what he wants. I have learned that I take one step at a time and often everything changes in an instant. A much needed break is a week away and I am ready. I am forgetting very important dates, have mixed up meds, but Jon always double checks, forget things as soon as I hear them, am not sleeping at night listening to the speaker to his bedroom for any emergency, that rarely happens thank God. Often when I make sure he is OK before bedtime he will tell me he had an accident and needs cleaning. I have learned that he isn’t doing these things on purpose and I have to be responsible and take care of him. No judgments. He is at the point where he can no longer walk, arms and hands paralyzed, and he is 100% reliant on me or his part time aide to feed him, clean him, and everything else that the elephant brings into the room. So for however long this goes on, I have given my life to caring for him. Isn’t that what relationship commitment is all about? People tell me to put him in a nursing home. It may come to that but at the moment that is the easy answer. I pray that I can spend every second/minute/hour with him while I can. After 53 years together I choose to not look at being without him.

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