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Major Stressors Caregivers Face
Many of the topics discussed on our ALS forum pertain to pALS living with ALS. I am very grateful to have this online community made of patients to turn to and discuss things about living with ALS and ALS research. However, I’d like to turn the focus to our brave, heroic, and selfless caregivers for this post.
Caregivers are amazing, but they also have unthinkable stress to try and manage. Three primary stressors include
Isolation and feeling like they have to do it all. ALS is not only isolating for pALS, but also caregivers. Although within our community we understand the devastation and limitations of ALS, others do not. Friends and family may not be aware of how much support or what kind of support to provide.
Feeling stressed and guilty. Many times, caregivers feel like they have to do “it all” because they love their pALS. Many times, the caregiver is a spouse or a child and by nature, we will go to the ends of the world to take care of those we love.
Financial stress/burden. Many times, especially right after diagnosis of ALS, many caregivers and pALS contemplate their future needs and try to prepare. This often includes costly renovations, moving, and needing expensive adaptive technology and equipment.
As a caregiver, how have you addressed these stressors? What other things have caused you extreme stress? Do you have solutions or recommendations to share?
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9 Replies
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I’m the wife and caretaker. We got our diagnosis last year in September. It was a year on September 13, 2023. We have undergone renovations to our home. We now have a converted van. And recently. COVID came to visit me and husband. As a caretaker, it has been devastating. And I do try to do it all. But, I’m getting to the point where I need help. I think that I must make it look easy to family members, but it’s not easy. I find that I have to ask for help. Volunteers are not very frequent. I have reached out to different agencies to get help with speech technology and help with house cleaning which gives me a break and more time to find ways to work smarter in planning how I can better care for my husband. I try not to plan to far in the future. I tend to become mentally overwhelmed when I try to anticipate what might happen next. I have learned to take a day at a time while making sure I keep my husband encouraged and in good spirits. ALS is extremely hard on caretakers. I recently saw a couple during one of our visits to the neurologist, the caretaker, I assumed was the wife, looked so tired and drained. Her husband, I assume, was much more advanced in his disease than my husband. I still think about her. As a caretaker of a pALS, I’m a witness to the how difficult the job is to care for the love of your life.
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Doris, I am so sorry you are having to do your caregiver role alone. Is there any way you can let friends, family, or neighbors know what you need and how to be of help? Things like groceries, help putting out the garbage, even spending a few hours with your husband so you can have those few hours to spend for yourself. Caregivers need self-care, otherwise, you might feel burned out. This discussion thread may be of help: https://alsnewstoday.com/forums/forums/topic/how-do-you-take-a-break-from-caregiving/
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I hired an aide for 3 mornings a week to give my husband (my caretaker) a chance to go out.
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My 56-year-old brother was diagnosed last Christmas with ALS. A major stress factor at this moment is trying to navigate getting medical coverage under Medicare. He was recently enrolled in SSDI, so he does qualify for Medicare. It’s one thing to qualify but it’s quite another to find coverage for things like radicava, Relyvrio, in-home health care,end of life care should that become necessary, and so forth. It’s fortunate that my father was able to help him with 10’s of thousands of dollars worth of home mods and equipment, but that pot is much diminished. Can you or the community advise what direction to go to find coverage that will not leave his family with a burden of debt in addition to the burden of the loss of his life eventually?
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Have you been in contact with your local ALS Association for their advice? Or, other resources, like: https://www.youralsguide.com/support-services.html
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I don’t know why the link says “501” – – I checked, and it does work.
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The ALS assoc has been very helpful with ramps needed and hospital bed and van rentals. The biggest stressor for me is finding good caregivers for my husband who is essentially paralyzed and can no longer speak. I have trained multiple people and if they are not up to the job I have to find someone else and start training all over. It’s exhausting.
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It is good to know the ALS Assoc has been helpful for you. You are to be commended for your diligence in training all the aides who have revolved in and out of your care.
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My wife received her diagnosis about 6 months ago but was showing symptoms long before and we did not even consider ALS as an option since she is only 36 years old. The stressors are very real since I have been the only one working the past few years while she stayed home with our two children (2 & 5 years old). We have had a difficult time figuring out the best way to stay in our home which is very difficult to navigate. We are still trying to figure out funding to make the necessary modifications because moving in this housing environment and stresses of moving would just be too overwhelming in our current situation. I’m currently trying to figure out a transport vehicle but at least she can still stand and take a few steps to get into our current minivan but I know time is not on our side. We have spoken to the ALS association and they have been helpful with a few things but I realize there is way more to come. We luckily have my mother and her best friend willing to help so I can maintain a job to take care of my family but its getting harder and I fear with lost time at work at our age its going to get harder and I’m honestly terrified. I love her and my children so much and I just want to protect them, but I can’t and have to prepare. My head is spinning daily…..
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