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What is the hardest thing being a Caregiver?
Caregivers take on many roles when they are taking care of their beloved pALS. What has been the biggest obstacle or most difficult challenge you’ve encountered? What resources were available? What resources are needed?
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11 Replies
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For me is just watching my dad decline and feel so helpless. The sleepless nights suck at times, but I just try and remember what he is going through.
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I was caregiver for my husband, who lived with ALS from 2009 until 2014. The toughest challenges I encountered were the unexpected and unpredictable bad situations that inevitably occurred: Power wheelchair breaking while he was fully reclined in it and before we had a hoyer lift; his extended bad case of diarrhea later, when he was completely immobile and dependent (involving multiple solo cleanups day and night), an unexpected mandatory home evacuation, etc. You can plan and prepare but those unforeseen challenges are the toughest!
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For me is just watching my wife decline every day is a struggle and anxiety, looking at my wife beautiful face put on wife makeup just to help her to look beautiful , Is heartbreaking, and feel so helpless.And grandson who never been able to known her. Wake up every two hours to monitor her oxygen and ventilator. On top of all fight with the insurance company for her medication and equipment,Thy been charge me $1708.00 a month for ventilator machine .It’s all about money You are just a # in the system .
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Gideon, I am so sorry you are having to fight your insurance company. Are you using Medicare? They should cover a major portion of ventilator expenses. Is your local ALS Association Care Coordinator assisting you with insurance issues?
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I was helping to care for my twin sister on weekends as we lived a distance apart. Hers was so progressive that we didn’t have full time care for long with her. 8 months prior to her death she hiked 4 miles! So her symptoms at first we mild. Our biggest challenge was her refusal to see a Dr and get proper care. I could easily lift her in and out of a wheelchair, wash her entire body/hair myself while holding her up, taking her on and off the toilet etc. She had no use of her hands as they curled up, first one and then the other she and couldn’t walk for 6 months at all. My biggest challenge was being her twin and watching her body change so quickly from a healthy woman to being completely helpless. She kept a good sense of humor, was kind and very positive about getting better. She made epic plans for her future up til the end. This was so hard on me since I knew absolutely in Dec that was dying. She lived til June 18, 2020. The hardest part of all was being with her at the last hospital and attempting to comfort her. The things she said to me were so very painful. Her mind did a replay of my name prior to making requests. They made no sense so I know it wasn’t her intention to say what she did. Romy, Romy, Romy kill me, hurt me, save me, help me…so many things but always my name in 3s. One of the things she said out of the blue was, “I thought I was going to get better.” She never accepted her diagnosis of ALS that she got 6 weeks prior to her death. As I face each day without her, she is on my mind day and night. I did all I could to help my twin when others doubted she was sick at all! I did my best to inform all our relatives and got a several out to see her in time. Its so hard to go on without her but I have to. She would not want me to give in and I now understand the struggle to go on after this type of loss. The Covid 19 outbreak affected greatly people seeing her and that was also very hard on me. I did all I could to be there for her and have no regrets. This is my twin just 2 years ago!
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Romy,
Your sister was so very fortunate to have you in her life. I’m sure you made all the difference in the world. I can only imagine how difficult it was, especially being twins. Thank you for sharing and know that we are here to be supportive.
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Did anyone have support or resources from anyplace unexpected? Did you contact the local ALS Association?
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Thank you for your kind words. When we finally got her to the first, second and then third Dr who was the head of the ALS dept at University of Washington medical center it was truly too late! He got a van and lift approved for her immediately and other helps but she was put in a hospital before he could finalize this. When she was moved to Sequim it was to a private care facility for only one night. There were no doors on the bedrooms and her room mate kept falling out of bed. People wailed all night. So she got her daughter to move her to the hospital as she was suddenly in very bad shape. Then after a day there, she was offered Comfort Care. She called us barely able to talk and told us she was going to die in 2 days. I was out at my home on an island we were fixing up to move back into. I jumped onto our boat, took it to the mainland, got into a car and drove that all the way to see her 6 hours away. She was in such bad shape when I got there. Eating very little, talking only when she felt she needed to say something, didn’t answer my questions much and never returned the I love You’s that we always did. I tried to get her out of there with home care but no one could take her in that bad of condition. She needed around the clock care and medication. She stopped eating after two days completely. We fought the doctors daily to keep her there instead of a nursing home where she could not see family. It was just too late to get her help with the ALS foundation. They even had sent her a BI Pap machine that didn’t get opened as she was in the hospital when it arrived.
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We had our ALS chapter care coordinator reach out to us within 24 hours of my husband’s diagnosis. It was so reassuring that she was there for us. She was able to answer many of our initial questions. Since then she has provided guidance for resources we’ve needed.
I would say the hardest thing about being a caregiver, so far, is that I’m the person most engaged in learning about this disease and everything that’s going on to help pALS. My husband isn’t nearly as engaged. He really doesn’t want to hear much from me about what I’m learning unless I hear about a cure. Well, of course, that hasn’t happened yet. Being the assertive spouse that I am, he sometimes hears things in spite of his objections. He’s progressing fairly slowly at this time. I am thankful for that. He’ll be participating in the Healey platform trial.
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My husband was diagnosed in June of this year. While he is still relatively mobile his speech is gone. For me the hardest part is not understanding him when he tries to talk and realizing that I will never, ever hear his voice again in the way I want. He was always the one that handled the crisis in our lives; took care of making sure the taxes were paid, insurance was good and fighting for the best deal … on anything. I miss that. I miss someone else being able to answer the phone every so often. I know it is going to get worse..my mind tells me that each and every day but my heart breaks with that knowledge. And I try to appreciate each day and the good things that go with it. And I always, always try to remember that no matter how difficult it is for me, it is so much harder for him.
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The hardest thing for me is feeling so helpless watching my husband struggle to eat, to drink and to walk. Just as Amy said, my husband was the bill payer, the handyman, the person I always leaned on. Now he can’t do any of that and I know it’s very selfish for me to say but it’s all in my court now. I miss my beautiful husband. I am so thankful he is with me. I’m so scared for the future.
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Hi Ann, and all the other wonderful contributors. And Dee, I guess I’m between you and your husband – I’m the one who does all the research and makes my consultant’s life hard. I reckon your husband and I were born at either the best or worst time to be diagnosed. I’m doing all I can to stay alive and get on a genetic therapy trial.
I am/was that handyman, Ann, just like your husband. Now I’m the one who can’t hold a hammer.
My last job before I retired was as a handyman and bicycle mechanic. Yesterday I taught a friend to repair his bike, itching to get my hands dirty. He was so proud when he saw what he had achieved.
I was grinning from ear to ear though because, rather than looking down, I looked up and saw six buzzards circling over the garden, a skein of geese flying East, a kestrel right over my head, two hares in the field and a family of partridges. I smiled to myself all evening.I guess it’s hard, but at times just looking up and being thankful worked wonders for me yesterday.
I was also, in my teens, carer for my Mum who had ALS. Even when she couldn’t talk, we still played the odd practical joke on visitors. I look back and realise my grieving went on over five years, and in a strange way I did not look on her death as I might have done without this. That was 45 years ago. Now it’s me and I’m fighting this disease as if my life depended on it … because it does!
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Thank you David for your inspiring words, positive outlook, and for sharing memories of your mother.
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The hardest part for me is that we’re young for ALS. My wife and I are both 39- so on top of seeing all your dreams crushed and dealing with the grief, I’m working full time, we have a 5 year old son, and now I’m a full time caregiver and paperwork jockey. I suppose we’re fortunate in a way that I can work from home, but there are definitely days when I don’t know how much longer I can keep this up.
I’ve found the ALS resources to be pretty lacking, but then again, what I’d really like is someone to live with us full time and take care of half of this! My biggest lesson learned is to accept help when offered. It took a while to get to that point, but family and friends have been generous with their time when they can, and that’s been helpful.
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