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allegro (@allegro)

Amyotrophic Lateral Sclerosis (ALS) Lou Gehrig’s disease

Caregivers | Last Active: Aug 15 8:24am | Replies (82)

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@allegro

I HAVE GOOD DAYS AND BAD DAYS….SOMETIMES I THINK I CAN'T DO THIS ANYMORE, AND THEN I REALIZE HOW MUCH HARDER IT IS FOR MY HUSBAND AND I SHOULDN'T FEEL THIS WAY……I WAKE UP EACH DAY WITH AN ANXIETY ATTACK BUT IT FINALLY PASSES WHEN I HAVE TO START THE CARETAKING…..HE DOES NOT WANT TO GO TO A FACILITY AND I THINK HE WOULD RESENT ME IF I FELT HE SHOULD….ALS STANDS FOR "A LIFE STOLEN" IN MY ESTIMATION……..

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Replies to "I HAVE GOOD DAYS AND BAD DAYS....SOMETIMES I THINK I CAN'T DO THIS ANYMORE, AND THEN..."

@allegro
Hello,
I’m very sorry for what your going through both physically and emotionally.
My cousin had ALS some years ago. While he was able he chose the date to turn off any machines. I, to some degree, know how challenging this horrendous ailment is to deal with. Not as much as you obviously. I understand there are medications now that may help although I don’t know anything about them except they are not a cure but may slow some of the physical symptoms associated with it. There was nothing available when my cousin had it. I believe it’s very admirable you keeping him home for now. I can relate to being a caretaker. Difficult doesn’t even begin to describe what it’s like caring for someone so ill. I helped care for my Dad who was paralyzed from the neck down
(C-5 Quadriplegic.) As hard as it is for you your loved ones needs obviously must come first and as hard as it is you must cope with all the challenges that are coming. As intensely difficult as it is for you, we care givers are so very fortunate. I’m not sure you understand what I’m trying to convey and not very compassionate perhaps but please believe me I know how hard the day to day challenges are and even to a certain degree the loss.
May God give you the tremendous strength you need to get through this. I will be praying for you both and your family.
Blessings,
Jake

Hello @allegro I am late to this conversation and not sure how I wasn't aware of it, but wanted to chime in. As they say 'better late than never'. It is great you have found the Mayo Connect community!

I am Scott and I was the caregiver for my wife during her 14+ year battle with brain cancer. The day to day grind of caregiving is intense and emotionally and physically draining for sure! One of the important things I learned as a caregiver is "Superheros only exist in the comics! Superman and Wonder Woman are not ever found in caregiving". We, as caregivers, can only do what we can and that varies by individual. Love is our fuel, which is better than any souped up, racing blend there is!

I also want to endorse what was mentioned by @debbraw and @colleenyoung about hospice. In my wife's case it was a very important added piece of her care. She had been ill for about 12 years when he prescribed hospice for her. She made the decision to opt for home hospice and in our situation it was a great decision. Hospice nurses were a tremendous help, they got her a hospital bed, meds got delivered, and she got great care. While the doctor said she might live for 6 weeks in hospice care, my wife fought for 14 months. The caregiving was still intense on my part, but it was manageable at a point where there was no way I could have done it alone any longer. In my wife's case home hospice was a great option for her late life care.

I also kept an old feather pillow on our sofa, which when times got extra tough used for a punching bag. I beat on that pillow and cried into it more times than I can count! It served a needed service — until late one night about 2 am, I laid into it, my watch caught the fabric, cut it, and suddenly I had feathers all over! At least while I cleaned them up I was laughing at myself 🙂

I will only add one more thing — another quote I like, which I think fits us caregivers. "Courage does not always roar. Sometimes it is a tiny whisper which says 'tomorrow I will try again."

Please feel free to ask me any questions you might have and I hope the sun is shining wherever you are today!