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However, I haven't figured out how can I get him from point A to point B as I am in a wheelchair. If I helped him into a small manual wheel chair, I could push him around if I am here alone. Has anyone had these challenges? Yes, I know, I could hire someone, I could go to social services etc. but our circumstances and money has not allowed this at this time. I know once he is put on "hospice" ..... care will be available. We live in rural area with no close neighbors, and if this can be safely done I would welcome ideas.


I have already arranged living room to accomodate a bed (when needed) and I have a bedside commode ready as well as how to bathe him. I have been reading this forum for years and I have learned so much.


If you have any ideas I would appreciate hearing them. Example: I have learned to use the handle of a crochet to turn on my stove and my chair goes up and down. I am independent on my own but I never gave any thought that as the disease progresses he might not be ambulatory on his own two legs. Right now is not a problem. Thank you for your kind responses. For those who will want to tell me to put him in a nursing home, I am prepared to do so when appropriate. I've figured out so many things, maybe this is something someone knows what to do.

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I have been checking on Medicare/Medicaid and we are not in the need right now. I do need to get ready for the difficult days head. While, I can do so much in my chair, I am realizing there will be many things beyond my control.
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Thank you so much for your insight. I know I'll have to hire someone to help. My chair is a surprise to many but your would be surprised what you can do if you are shown. Once he becomes bedridden, it will not be something I can do. I believe with all my heart that we have a need for help - when we don't make enough to pay all costs and we make a little to much to qualify. We both know that if the time comes, I will make the difficult decisions. We're on year 11 with this. I know my challenge lies ahead.
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LNReason, how lucky your hubby is to have you by his side. You are a good problem solver and willing to try different things. Sounds like your wheelchair hadn't stopped you in the past and it won't stop you now.

One never know what is in store for the future. It is good to plan ahead for whatever comes your way, and you seem to be doing it correctly. Keep thinking :)

When my parents were in their late 80's, my Mom thought she could handle anything that came her way. Such has picking up my Dad if he fell. She was in for a surprise. She had to call my sig-other to come to the house to help Dad. I know the local fire dept/rescue dept are more than willing to help so that is an option.

So run all sorts of issues through your mind, and have option A, B, and C.

Hope everything works out smoothly for you and hubby :)
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LNReason Jan 2021
We are going on 11th year and so far so good. But, he is beginning to stumble and has taken several falls outside. I have checked with our social service in our county and as of now we don't qualify for help. I'm trusting the answers will soon be on the way. I know I'll need outside help but until then I realized I hadn't figured this out. I might try practicing different things while we are both able. I won't fight the inevitable but I would like to care for him as long as I am able. Thank you for your response.
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Please don't make assumptions about what county aid might be available to you. Contact social services for your county and have them come out and do an assessment to see what in-home help you'd qualify for.

Kudos to you, a fellow "problem-solver" but please please make sure you take care of yourself more or equally. Caregiving can be extremely draining on every front. Even if you did have neighbors, or even family, close by you could only depend on them for a limited amount on help that is not "on demand". See what the county and other nearby faith-based organizations can do to provide help. You may even want to explore Medicaid for him. I wish you many blessings!
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I have to ask the obvious question here, how in the world are able to take care of your husband, yourself and your home, when you say you are in a wheelchair? That is quite an ambitious task, even for someone not in a wheelchair. I'm not sure you are being realistic here. I took care of my husband for many, many years, and I am not in a wheelchair, including the last 22 months of his life where he was completely bedridden. It was hard. I could not have gotten him from "point A to point B" by myself, once he was bedridden, if my life had depended on it. I had my oldest grandson help out for about 10 months and then I had to hire an aide to put him on the bedside commode, and then put him back in bed. He was under hospice care as well, but don't think for one minute that they will give you or him the kind of care you will need. They have a nurse that comes out once a week, to check his vitals, (usually there about 45 minutes tops)and then an aid will come about twice a week to bathe him. That's it as far as any help from them, so 99.9% of your husbands care will still fall on you. I admire the fact that you want to take care of your husband. I did too, but I could not have done it without the appropriate help. It sounds like at this point, the best help you can give him and yourself, is to to place him in the appropriate facility, or hire some outside help(even though you say you can't right now) His safety and yours as well, must be your number one priority. Sometimes the right answers are not the ones we want to hear, but they are still right. God bless you.
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