Caregiver for my wife with ALS

My wife of 45 years was diagnosed with ALS in August 2011. She feels she had it at least 1 1/2 years prior to being diagnosed. After the first year, she lost all use of her legs and is in a power wheelchair full time. Since then, she has lost all functions of her hands and arms, neck, ability to swallow and the ability to talk. She is fed thru a PEG tub and all of her meds go thru the PEG tube. Being her caregiver has been the most difficult thing I have ever done. Her disease has stripped both of us of our ability to live a normal life. It has destroyed us financially, emotionally and physically. For both of our sakes, I am hoping she termiates very soon. She has no quality of life, and can only blink her eyes for yes or no questions asked of her. I am having a problem trying to continue as her caregiver. I hate the disease she has and I feel I'm starting to dislike her because of the difficulty of caregiving for her. I would really like to bring someone in full time to watch after her but it would take a huge bite of the nest egg we've worked our whole lives for . I need to be able to live many years after she passes.I guess I'm just complaining and would certainly like to hear from other caregivers going thru the same thing.:sad:

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next coca cola girl's picture

I feel for you as I have bulbar ALS which effects my speech, swallowing and breathing and now my muscles. I can relate my husband the other day said I'm his frustration I think you hate me or your just so mad you take it out on me. Neither of these are true. Yes I get frustrated when he doesn't understand me or doesn't have the patience to. As far as wishing this would end, she probably does too as we don't like being a burden. Sometimes I think this disease is for the other people's trials for compassion and patience. For me being so independent and having to ask for help has been very hard. I've found that by excepting help it not only helps me but also the one offering. When people ask what can I do, let them know you could use some help and they will be more than glad to help. I hope you find peace and pray for you and your wife. GOOD BLESS

rahul_b's picture

hello. so sorry to hear about that. How are you still coping?

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