Last night my husband had a nurse call me from the rehab he's in. He said, "please get me out of here before I commit suicide, they're all crazy here". He was admitted to rehab for several reasons. He fell in bathtub. His BM movements are loose and often. He has Parkinson disease, Neuropathy, cannot walk and a dementia. After 3 days in hospital, I was denied. I told them he was spitting up blood and no one listened. At rehab, I told them he was spitting up blood. They gave him a chest x ray and found he had pneumonia. Now I am appealing this denial of 3 days in hospital. He is now getting treatment for pneumonia. He is very unhappy there and misses home. He can be there for 20 days. I applied for Medicaid and hope I can have help here at home when he's discharged.... however, I want to take him home as soon as pneumonia clears up. I miss him here. I keep running back and forth with food he eats. He eats nothing there. He is a sweet man and never complains about anything I do. Married over 60 years. Am I doing wrong to take him home? I feel lost without him. It's terrible. We've never been apart. Both my sons think I should consider long term for him. Sometimes he's so lucid but last night after I spoke to him about the treatment he needs, he said "OK, "I'll go back to the hotel room". Sometimes he thinks he's in Vegas or Florida. But he snaps out of it when I reassure him that he's being well cared for in rehab. Really want him home. I know I can take care of him the best way I can. What do all of you think ?
Everything in your question speaks so beautifully to the love that you and your husband share.
You also describe the painful illnesses and circumstances with which you are both dealing.
In a situation such as yours it is very, very difficult to use what you KNOW instead of what you FEEL. Part of the pain with decision making is realizing that, and accepting it.
It sounds as though you realize that his multiple physical conditions require 24 hour attention.
For a moment, can you consider your personal feelings as not being “right” or “wrong” but rather as being more or less beneficial for both of you?
It sounds as though the kind of help you need is at least partially related to incident specific care, the kind that presents itself on no logical schedule.
With that in mind, shorter increments of help on a fixed schedule may not give you peace of mind, or enough sleep, or the ability to plan and manage his daily routine in a way that is comfortable for you both.
You are blessed with strength and determination, but the progressive nature of some Parkinson’s disease types means that his condition could worsen (or not) quickly over time.
Your job has to be based on planning for his safety, comfort, and peace, and also, very importantly, for your own.
It is a tragedy that we are laced in some situations that come to us with no good choices.
For him and for yourself, take a look at some nearby residential care settings that would be appropriate for him.
If you would be comfortable doing so, ask one of his physicians if he might benefit from a small dose of relaxing/mood balancing medication. Parkinson’s is a disease that can cause depression.
He may be speaking of you when he says “home”. It is often a little easier for all concerned if residential care is given a fair trial before going “home” instead of going home and then finding that residential care is really the only option that is workable.
You will be making your decision from love, and that will be giving you the strength to make your decision, EITHER WAY, a good one.
Please go back and read your posts from a few weeks back when you were totally burned out and crying all the time.
Your husband needs more care than can be given at home by one human being.
If you can afford to have lots of in home caregivers and IF your husband is happy for them to be there, then bring him home.
You DON'T have to go the rehab all the time. He WILL eat the food if you don't bring from home all the time.
Try going three mornings a week and give YOURSELF and HIM some time to adjust to this new normal.
(((((hugs))))))
I work in a Memory Care community as a front desk receptionist. Every single day I interact with husbands & wives who have had to place their spouses in Memory Care because home care was just TOO much after a while. But these spouses come every single day to see their loved one.........every day, sometimes multiple times each day, even. And so both of them thrive. One gets the care he/she needs each day while the other gets to go home and rest comfortably without the burden of worrying if the other will make it through the night. BOTH get to have a life of their own without burdening the other too drastically.
Please consider these words carefully, as you can do the very same thing with your dear husband if you place him in Skilled Nursing. I know how very difficult all of this is for you, especially at 80 years old after 60+ years of marriage, and my heart goes out to you. But you have to also consider YOURSELF in this equation, okay? If you take him home and you both fall, then you'll BOTH be in dire straits!!!
Take care and be well, dear woman.
About Me
"I am a healthy 80 woman with lots of energy...however, I am finding it to be very stressful in caring for my husband who is wheelchair bound and weighs over 200 pounds. He cannot hold his urine and lives in Depends. He has a mild dementia and has difficulty remembering what I said seconds ago. I am alone in his care. I would like some help with showering and dressing but it is very expensive. I would like to get him on Medicaid since his income is very low but I don't know how. I cannot get him out of the house because of 6 steps to the car. I worry about doctor appts. I can go on and on but to what avail ? I am stressed out and worried."
So if you bring him home, you won't be able to get him to doctor's appointments, right? That's a non-starter in my book, unless you are certain that you can get a reliable geriatrics doc who makes housecalls.
Have you inquired about Hospice?
Can you afford Assisted living for both of you? It may be a good option. He has all the help he needs, you have help and your both together. You will have activities you both could enjoy. A bus/van to go shopping or Dr. Visits. You can leave him alone knowing he will be OK while you are gone.
At this point, tell him he needs to do what is expected and he can't come home until the pneumonia is cleared up. Hopefully in the meantime you can find out what Medicaid can do for you.
Stitch, call your sons, you NEED their support. Ask one or both of them come and stay with you for awhile. They support you and see how the care you have been providing is harming you. They do not want to lose you. They cannot read your mind.
Re-read your thread from a couple of weeks ago. We all support you and are with you. Stitch, you cannot do this alone like you were before. You are aging too.
Peace be with you.
Preliminary:
First of all his bowel movement should NOT be loose and often--he may have C. diff diarrhea or other problem, and should have a workup on that. He may even need a colonoscopy if the C. diff test came back negative. If he's been on antibiotics definitely check on C. diff diarrhea. It's only a stool sample and do NOT get him discharged with diarrhea without knowing the cause. If they discharge him get him back to the hospital and TELL THEM you will do that. DO NOT let them discharge him without knowing why he is having loose stools.
Second consideration. He may be aspirating his food already..their swallowing gets very poor and food may be going into his lungs. That needs to be evaluated. So he may need a feeding tube. A person can still aspirate with feeding tubes IF you tube feed them too fast or they slouch down during feeding. Tube feeds require STRICT SUPERVISION, and they need good oral care. You MUST brush their teeth and gums because oral bacteria can cause pneumonia. Do not EVER leave a patient alone while tube feeds are in progress.
With Parkinson's disease he will eventually lose the ability to eat and walk, so talk to him about a feeding tube. The feeding tube requires its own kind of care. GET ADVANCED DIRECTIVES. Would you be able to change his diapers, and can you lift him to the chair with a Hoyer lift. If he chooses no feeding tube be mindful it can take 2 to 3 weeks to die of dehydration.
There is a lot of BACK BREAKING physical work involved with home care and depending on your condition you may not be able to do it. It's possible to do that, but can YOU do it. Can you clean his poop. If you say you can't clean up his feces then organize a nursing home placement.
It’s obvious that you love him. I am sure that he adores you. Can you hire a sitter to look after him for a bit? Maybe that will put your mind at ease.
Many hugs. 💗💗💗
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