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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 ?

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Happy;

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))))))
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From your profile:

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?
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I am holding your hand as I say this to you.
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.
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First Pnemonia can have symptoms of Dementia or worsen it.

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.
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This post makes me so sad. It breaks my heart. I wish that I knew what to say, I don’t, other than I wish that both you and your husband did not have this heartache. I want him to be safe. I want you not to get worn out from the care.

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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I'd try to be realistic about what care you can do for him at home. Wouldn't a finite home care plan be wise? It sounds like he is not able to process that. Have you inquired about the financial consequences of removing him against medical advice? That would concern me for multiple reasons. Also, if he's threatening self harm, I'd request a psych evaluation.
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I think you should listen to your sons ...Hugs 🤗
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It sounds to me like your sweet husband first needs rehab, and then needs to be in long term care, for both of your sake. Missing him is hard, I know, but he needs to regain his strength in rehab and be able to recuperate from a serious illness. You don't need to continuously bring him food, either, as there is always something he can eat in rehab ie: grilled cheese sandwich. Is it home cooking? Well no, of course not, but he can survive without you bringing him all this food from home.

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.
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mek1951 Nov 2019
Your kind perspective is very valuable. This is a hard situation, and you describe a sensitive and positive path. There is no 'solution', only a way forward that can work out OK. Thank you.
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The question you should ask instead--are YOU able to provide home care.

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.
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jacobsonbob Nov 2019
If he weighs 200 lbs, we can BE SURE there will be back-breaking physical work involved!
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Once the Smoke Clears and you are Able to Sign him out SAFELY, Yes, Take him Home. However, As his Disease Progeesses you Might want to Consider Other Options or More Help, angel.xx
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No guilt!

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.
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If you want to bring him home and feel you can take care of him - do it! ASAP.

My DH had pneumonia but we didn't want him to go to the hospital, he was already 96 and afraid. We tried everything but his pneumonia dragged on for 2 months. Finally I called a friend and asked her about the Colloidal Silver she was using, I bought the Colloidal Silver Nasal Spray and in only a few days, the pneumonia left his lungs.

The pneumonia took much of his memory but he did recover and I was able to keep him home until his last breath and have been thankful I did that. So yes, if you want him at home with you, bring him home.
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Dementia is part of the disease process for Parkinson's disease. Please review good medical sources of what the dementia will look like for this disease. it will get increasingly more difficult to care for him at home. Maybe it is time to consider long term care either in a facility or at home. Talk with the nursing staff about the kinds of help he is being provided - make a list. From the list, decide which kinds of care you can provide and what kinds of care will need to be paid for. Then ask social work to help you understand the costs of in-home care versus long term facility and how your insurance and Medicaid will pay - or not pay - for each.
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I see a little disconnect here. You say he never complains but he demanded you get him out of there and threatened suicide. I agree with cetude about being sure you are able to care for him and won't ruin your own health by bringing him home. I understand your sadness, but we often have no control over what age and illness bring. Whatever happens, don't feel guilty. You care for him deeply, and you will do what you can to help him in this difficult situation. Prayers for you and him.
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Tough situation you are going through.

I understand that you miss him at home. Understandable. But PLEASE do not let that be a determining factor driving your desire to bring him back home. From many things you've said, it is too much work. You are burnt out, etc.

I like the idea of you both moving into AL. Then you can get some help and still have some independence. There IS a limit to how much you can do for another person.

I know this is hard, so hard, but you need to step back a bit and try to make your decision from your head and not your heart. Think ahead to what it will be like in a week, a month, etc. I really think it would be too hard for you - not you, but anyone.
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I am so sorry for what you are going through now. These are such difficult decisions. You have to be realistic about what you can do, and whether you can afford to have a caregiver come in to help you. If he needs to be lifted to a wheel chair and toilet, could you do it? Are you able to clean up after his bowel movements? Can you leave him alone to go shopping? These things would all be easier with an aide helping you. Think about one of the suggestions below that both of you move to assisted living. That is one option.
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I agree with leagleonni1. She has experience with Memory Care and the home where my husband is take wonderful care of him and he now has fun with the caregivers.

I know this is a hard decision. I had to make that almost 3 years ago after living with my husband 62 years. My son and I decided I just could no longer care for him safely at home. We placed him in a memory unit and although it was difficult, I am able to visit as often as possible. I need tell him I am going home, but that I have to leave for a little while to take care of our little dog, Suzie. And I always reassure him that I will be back soon. He is unable to do anything but feed himself. He has Ahlzeimer's Disease with vascular dementia, and still knows all of us but memory resorts to things in the past most of time. I bring him little treats that I know he will enjoy like red grapes, favorite cookies, etc. but just enough to eat at the time.
Ruth
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you need to make the choice that is best for his care and safety. You may miss him, but he may need more care than you can safely provide at home.
Have you looked into a continuing care facility where you could both live and where he could get increasing amounts of care as needed?
Even if you qualify for Medicaid, that won't pay for the amount of care you are going to need for him. You will need to be prepared to pay all or most of that out of pocket.

"Going back to the hotel room" isn't such a bad delusion.
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IMHO, the dynamic of him living with you will not work as you are not a medical professional.
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Happy, if you bring him home and he falls, how will you get him up? This was the situation with my in-laws. StepFIL had Parkinsons and was 6'4". He was in denial about his illness. He'd fall in the middle of the night, and when his wife (who had a chronic back problem) couldn't get him up she'd then call my husband and sons in the wee hours on a school night and after our long day at our business for us to go over there in the freezing cold MN winter night to pick him up. He did this a few times and then we just saw no other solution than for him to be in a care facility. When he fell in the middle of the day or his wife couldn't get him out of his recliner, they'd call 911. Then get a bill. I hear you when you are longing for him to return, but as BarbBrooklyn points out, you've already gone around once before with his care and it was too much for you. Please have your sons help you find a good, close place for him where he'll get the care he needs and you don't compromise your own health trying to do it yourself. Wishing you both peace in your hearts as you seek solutions.
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Knowing everything you know about your current situation, what would you want your husband to do if he was the one taking care of you. Chances are that's what he would want you to do if he could think clearly.
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Please listen to lealonnie and Barbbrooklyn!! They know what they are talking about!!
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My mother-in-law had to face the same decision with my father-in-law. They were married 68 years when he entered the memory care facility. While she was still able to drive, she visited him every day, but after several months she had a close call and had to stop driving, and cut her visits to 2-3 times a week so as not to place an undue burden on others. It took a while for her to adjust to his absence - she would speak about him with tears in her eyes, saying how much she missed him - but in in her heart she knew she was unable to care for him herself, and her faith gave her the assurance that they would one day be reunited in heaven.

Peace be with you.
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This is a difficult decision because of all of the emotions involved. While your heart is in the right place, given all of his current conditions, can you realistically provide care for the long haul? Caregiving is a draining business. What if Medicaid is not approved? What about your health and needs? Incontinence is one of the issues that cause caregivers to make the decision for long term care. At the very least, I would not take him home until a conversation is had with his physician regarding prognosis and a plan is in place to meet BOTH of your needs.
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Stitch, haven't heard from you. I hope you are doing ok and taking care of you.
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"I applied for Medicaid and hope I can have help here at home when he's discharged...." How is this coming along? Assistance guaranteed at home? Do you have the money to hire Nursing and Caregiving or will Insurance cover it? Look into it ASAP. Agencies such as Bright Star and Comfort Keepers, etc, offer both RN and Caregiving (transfer) assistance if insurance will not assist. What is Short Term Rehab Facility doing for him? OT and PT? Does he qualify for Hospice or Palliative at home? For a hospital to ignore 'spitting up blood' is horrendous! Contact Hosp Administration on that one. wow. Have BM issues been resolved? C-diff or ? And I think you should be together with your husband, do not separate, if at all possible. (Especially if he is near End of Life, sorry to even suggest that. Not sure of the seriousness of his condition.) I feel your anguish over this situation. Love and Prayers being sent to you, my dear.
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IMO you are not emotionally or physically equipped to care for your husband. By taking him home you will be doing a disservice to both you and him.

I would listen to your children, they are thinking with their heads not their hearts. As I said before, if you can't live without him being there at nights, then go into AL together.

He is not lucid and you are not thinking clearly, you couldn't handle his care before, you certainly cannot handle it now,, as he will continue to get worse.

I wish you the best!
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nymima Nov 2019
Sadly we always think things will be better than they actually are. We lie to ourselves that we can handle the ‘simple’ everyday tasks, when in reality, the 24/7 caretaking requirements are not so simple and can get us sick. And then where are we? He will not get better. My dad had PD too and he was a fall risk, and developed aspirated pneumonia a few times that landed him in the hospital each time. My mom was bad at giving him the proper consistency of food as my dad just wouldn’t eat what he was supposed to eat, so my mom unwittingly contributed to his pneumonia. He wouldn’t use his walker and one night he got up to use the bathroom when I was there and boom! He went face down against the bathtub and we couldn’t get him up. He was not responding right and we called 911. They admitted him to a NH with this hospital visit as he was unsafe at home. My mother ended up with a bad back from always trying to lift him up from a fall, and she developed pneumonia from being so run down from my dads constant care
at home. Granted, if we could have done things differently, we would have, but I lived 350 miles away and my mom just couldn’t handle it by herself anymore. It had to be. It was a really nice new NH and he got good care. My dad was never a social butterfly, but he made friends and enjoyed the activities. My mistake was when I transferred him from the first NH to the one down by me so I could see him more. My mother had moved down here with us just prior. My dad did not take the transfer well and he went into a depression and gave up a week later. He had aspirated pneumonia again and wouldn’t let the hospital do any life-saving treatment. So while many don’t have the decision to move their loved ones from NH to NH, moving them back and forth from NH to home and then back to the NH again when things get difficult, is not easy on them or us. I say leave him to acclimate and eventually he will settle in and you can visit him and still tend to him. It is the hardest thing we will ever have to do. I still question, but now that my mother is 93 yrs old, and I have to care for her, I am weary. And she is still of sound mind and still fairly mobile. But she is blind and deaf now and can’t do a lot of things on her own. And she is in end stage congestive heart failure. She is on hospice for this and they take good care of her, but they are not full time caregivers! My health is very bad now. We are not made to be full time caregivers. I don’t know anyone who said they loved it unless they had lots of help. But that is rare. Try to get over your guilt and do what’s best for him and let him settle in without thoughts of coming home. It will not get easier for you. It will only get more difficult. Your children are protecting you too.
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My husband passed away last week. Internal bleeding. Of course I am feeling so bad for letting him go to this rehab. It's been a nightmare for me. He had pneumonia and the last thing I said to him was, "as soon as this pneumonia clears up, I'll take you home" That night he was taken to emergency with internal bleeding. His INR was up to 10.  When he was home, I always took his INR and it was always within range. I feel that there was some neglect here but no lawyer would take this case......because of age any many other ailments he had. I am so upset and cry  all the time. I lost my best friend and beloved husband. Family and friends have been so supportive but it doesn't ease the pain. I thank you all for all your good advice. Having him here at home was difficult but manageable. Although it was getting very hard for me, at least he was here. I understand that I needed help but I would give anything to have him back. This was the most devastating thing I have ever been through. Now, all I can do is pray that he's ok up there. Thank you all for being so supportive. Paula (happy to stitch)
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anonymous912123 Nov 2019
So very sorry to hear this.
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Oh, Paula! I'm so very sorry to hear about your husband's passing. My DH is on Warfarin as well and I know how careful I am with his diet and getting him to check it consistently.

Two years ago, out of nowhere. my DH ended up in the ER with a UTI. His INR was found to be 17. Can you imagine? And no reason was ever found. So really, it can apparently go haywire at times just out of the blue.

Be gentle with yourself, lean on your friends and know that your best friend is at peace. (((((((Hugs))))))))).
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Paula, you are a courageous person to have brought him home. I am so sorry for your loss. My stepdad, too, was on warfarin, and his INR was at times all over the charts. It just happens sometimes.

Take time to grieve. Be thankful that you have supportive family and friends, and contact them as you need.
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