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The short of the long is my husband needs more care than what I can physically give him. He has been in the hospital since the beginning of October, first with high blood sugar, then low blood sugar followed by multiple other health issues. He is currently in rehab for therapy. While therapy has been beneficial to him, the plan is to discharge him to home. In the rehab center, it takes two to help him into or out of bed. Whenever I try to bring up the subject of not coming home, he is unwilling to discuss it.

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You've brought the subject up. He cannot/will not discuss. He's not ready to.

Of course this does not make the issue disappear or solve itself.

Silence is communication of a sort too. It could be his defiance? Or maybe his way of trying to adjust. (It's a huge adjustment of loss for him to make). Or maybe his silence means You take over Dear.

He is the passenger now. You are in the driving seat. So drive where you need to.

If home is not an option for him right now, arrange the next best option.
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Your profile says he has dementia. With dementia he’s no longer capable of rationally discussing and making a decision about his best interests. It becomes your responsibility. As you feel it’s beyond your capabilities to care for him in a home setting, and you’re wise to realize your limits, please talk to the staff where your husband is now. Let them know very clearly that there is no one in the home that can take on the level of care he requires and that you need assistance in finding a safe place for him to live. Tell them you cannot take him home, it would be an unsafe discharge
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With the diagnosis of dementia YOU are the one that makes the decisions for him about his finances, health and safety.
Your first sentence is all that needs to be said.
Talk to the Social Worker or Discharge planner where he currently is. Tell them that you can not safely care for him at home any longer.
If there is a Memory Care facility that you have found now would be the time to get those papers in order.
But due to his other medical conditions it may be better if he were in Skilled Nursing.
As far as his refusal to discuss not coming home...do not discuss it. Tell him he has to remain in care until you can care for him yourself and it is not safe now.
I would also urge you to consider Hospice.
Many facilities will "find room" for a Hospice patient that might not have room for what they think may be a long term resident. (I hate to put it that way)
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Have him evaluated for 24/7 care while he is there. If found he needs it, then tell them that discharging him to home is "unsafe". That you are not capable of physically caring for him. Where I live, Rehab and LTC are in the same building. Easy transferring from one to the other.

I suggest seeing an elder lawyer to have ur assets split. DHs going towards his care. When its almost gone, applying for Medicaid. You then become the Community Spouse, remain in the home, have a car and get enough of your monthly income to live on.
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Years ago in Florida, I recall reading articles about various people (not related to each other) that would drop an elderly relative off at a motel and leave him there. They were frustrated and didn't want responsibility anymore. I couldn't understand it at the time, but with all the info I now see about family members who refuse to go to a care facility or have home health care, I get it. I don't recall what happened to the dropper-offers, if anything, but it seems like it must have been illegal in some way.
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In a way you are in the perfect situation . Just tell the case manager he is Not Independent and you can Not Lift him . Ask to speak with a social worker and Have him transferred to a skilled Nursing Facility or Assisted living . Seek a Elder attorney to help you with documents and a care Plan . ( they should Know a lawyer at the rehab ) My Mother left the rehab a mess and was no way Independent - we waited almost 14 days for the VNA Nurse to arrive after her rehab stint which was about 80 days . She had a giant bed sore , was incontinent , could not stand , taste or smell and had diarrhea . I had to lift her in and out of bed and into a wheel chair and change her diapers . She was a big woman . We called 911 when the VNA Nurse arrived and she spent a week in the hospital and I found her a Nice Nursing home for 24 / 7 care . She lived another 3 months and 11 days . I never told her ' she was Not coming home " but rather she needed more rehab. I tell you that was the worst 2 weeks of my Life . I ended up at the chiropractors a few times . Don't put yourself thru that . I got tricked into Picking her up at the rehab . They knew she was Not independent .
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RedVanAnnie Nov 2022
I don't think Assisted Living would be enough care if a person needed help even getting out of bed. Suggesting your mother "needed more rehab," was a good way of letting her know she was not coming home yet.
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Don't discuss, tell him he's not coming home. Back it up with recommendations from his doctors, physical therapists. Tell him you do not have the physical ability to take care of him. You can't do it, so he's not coming home.
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Cover999 Nov 2022
I like how Docs, therapists and the like mention about NH and AL. Sure it's all well and good because they're not staying there.
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When my husband was in the hospital after a broken hip, the doctor came in and announced he should be ready for discharge to go home soon. Knowing nothing about advocating at that time, I was shocked and this was our conversation...

Me: There is no way I can handle him at home by myself!
Dr: Would you like for him to be sent to rehab?
Me: Yes that would be very helpful.
Next thing I knew a social worker came in.
SW: Where would we like for him to go?
Me: I have no idea.
SW: Rattled off several suggestions and with very little insight, I had to choose a place and she made all the arrangements.

My suggestion is have a similar conversation with his doctor and I would hope the doctor could make it plain to your husband it is not safe for him to go home yet. He then would have to have the discussion and hopefully the doctor would stay for a little bit to back you. It should be handled by the facility from there... except you would have to be prepared with the financial arrangements. They are required to plan for a safe transition when discharging but you will have to select a facility... insist on what you think is best for y'all... for your finances and care. Also, you might can appeal his discharge to Medicare and possibly get an extension.

Unfortunately, the facility I chose was probably the worst for his needs. After he recovered, we began visiting facilities to try and be better prepared if we ever have a need again.

My message to anyone reading this... Hospitalization, Rehab and/or Nursing Facilities are often needed when you least expect it. If you have not done your homework, start visiting facilities NOW because it would probably be very difficult to have a loved one moved to a different one afterwards. Go unannounced and take a tour, if they offer a meal take it... it is during mealtimes you get a good look how the staff interacts with each other and the residents. If not an urgent decision, get on their mailing list and attend any open houses or activities when invited. We still don't have a preferred facility but I found places we definitely don't want to use.

It is also very important you become aware of possible costs and your responsibilities financially. Will it be paid by LTC insurance, Private Pay, VA benefits, or Medicaid, etc.
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Cover999 Nov 2022
All well and good but the good ones tend to have waiting lists and/or no openings compared to the not so good
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If, as a loving wife, you are thinking that you “owe” your husband a voice in what his life is becoming, you may NEED, for BOTH of you, to realize that dementia has already deprived him of that voice.

Your attempt to “discuss” his circumstances may be complicating his already confused perception of where he is now and what has happened to him and what he NEEDS.

Keep your communications as simple as possible for now, remain focused on what is doable and SAFE (not necessarily “best”) for BOTH of you moving forward, and don’t plan too far out for him until you can get a sense of how he’ll do in “extended” care.

There are no good or right ways to handle these painful transitions, but if you or he may wind up in a physically challenging situation, there really is no advantage to considering anything but skilled nursing. You KNOW that.

Be at peace that you’ve considered the alternatives, and made the only safe choice available for him.
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I would ask for a meeting with his care team and the discharge coordinator, include him as the patient and have them lay it out. What will his needs be when he leaves this rehab, he currently needs the assistance of 2 people to get him in and out of bed, it’s just you at home. Do they think he will ever be able to do that safely on his own or that you will ever be able to do that safely. What will his other needs be and what are your options? Have the discussion with them, he can participate as much or as little as he likes but I would hope they are going to say you can’t manage things safely on your own and then offer the options. You can go from there (the experts are the ones presenting) with or without his participation, sometimes silence is the only way a person can participate in their reality. I feel for you.
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No convincing required if you are his caregiver you have final say. Not every decision you make will please everyone. That is just life.
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Cover999 Nov 2022
But he's the one staying there, she is not. So, if this is the choice, he should have a say.
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whenever my husband asked why he was in private care home … I said
because I can’t take care of you safely at home … after awhile he understood . I found the best private care home … was there everyday …brought him snacks and his favourite foods… on top of his care everyday … also FaceTimed with kids grandkids out town almost everyday… he was always happy see me … he’d say here’s my wife .. she signs off on everything!
I felt guilty but I knew I couldn’t do it
at home … no matter how much help … here he was safe and eyes on him
24/7 … and I hope he forgave me…but it did allow us to be together everyday and keep dignity till end
good luck … there are no good solutions ….
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Lymie61 Nov 2022
Sounds to me like he was bragging and proud of how well you were taking care off him o I don’t think there was any forgiveness necessary just admiration, love and enjoyment. In fact he was probably very grateful you made the decision that enabled him to not feel guilty about the toll hands on caregiving would have been taking on you and your relationship.
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How much money do you have to pay for the care he needs? Start talking finances with him and how much it's going to cost.

Continued facility care after rehab, and his commitment to willingly do the PT, could be a goal to getting himself out of bed without assistance...thus being able to go home.

Otherwise, you might have to get his doctor involved to tell him: Your wife cannot get you up and out of bed by herself, a fall could land you in a bed for the rest of your life, how about we move to NH bed and continue the therapy.
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You will possibly need 24/7 care and caregivers.
And considering today‘s shortage of such help, this is not very realistic.
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In a perfect world, your DH would not need more help than you can give him alone at home. But this is not a perfect world, DH needs 2 people to help him in and out of bed, and you just can't manage his care at home. Any man that would insist on coming home to have his wife deal with THIS level of care just isn't taking his wife's health into consideration at ALL.

Let the discharge planner know you cannot manage DHs care at home, and that he needs to stay put where he's at.

Let DH know you cannot manage his care at home, that it will break you, you are only one human being, and that he has to stay put where he's at. It's not your fault he's as physically challenged as he is, and that he'll get much better care in the SNF. You'll be by frequently to visit him.

Life on life's terms is sometimes ugly and not as we'd like it to be. Sad but true.

Wishing you the best of luck with a difficult situation.
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Please ask Adult Protective Services to visit your husband, at the rehab, to evaluate where he should be placed because you are not a licensed caretaker and you do not have ADA approved home. An appointment with a Geriatric Psychiatrist will offer placement advice and medications that can assist your husband in accepting his reality.

Elder Law Attorney: Please discuss financials and end-of-live paperwork for your husband and yourself. Also, ask how to file your taxes if he no longer lives in your home.
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Of course he is unwilling; do not let that deter you from speaking frankly with his Physician and case manager about your limitations and, need to get options for patient placement.

Being frank and realistic may be difficult and feelings of guilt may either threaten to sidetrack you or your husband or family may try to guilt you into what you know is wrong. Do not give in. Focus on the patient safety aspects and, his well being to be best achieved in placement care; that way you can be his wife and not his 24/7 caregiver which is totally different, debilitating.

Your husband most likely is grieving his decline, loss of independence and other things; his grief ( or any patients grief can quickly make them become very self centered, unrealistic, demanding and as time goes on verbally abusive or worse.

Enlist support from your local clergy, faith , pastoral care and/ or from a hospital chaplain and social worker who can also support you and your husband through the grief and needs you both have, though different.

Practice good self care.......!!!!
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If your husband is a two-person lift, and you are only a one-person person, talk to your husband about the result. You drop him and break his hip. You put your back out in the process. He goes straight into hospital and then a NH, whatever it’s quality. Chances are that he'll never walk again. You have to sell the house and move into AL, because now you have serious physical issues about daily life. Is this what he wants?

Repeat, repeat, repeat. Him insisting on ‘home’ will ruin your life, and could also make his much worse than it needs to be. Don’t let this seem like a choice he wants to try out – finding that it’s the wrong choice could be catastrophic for both of you.

And don’t rely on sympathy. Family and friends’ reaction will be ‘she should never have let him/them do this’.
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ShadowRnr: As your DH (Dear Husband) is a two person lift, therein lies your answer - YOU are ONE individual. Ergo, you cannot take care of him in the home setting.
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Is it possible he can live with someone else then? I will admit, I'm a bleeding heart for keeping everyone at home as long as they want/can. I understand and this is your choice, I had burn out myself after 7 years, so really - no judgement here - but going to an AL for some is a death sentence mentally/emotionally. If he's so adamant, maybe try to find another solution first if possible. God help you both, it is a very difficult situation. Hugs.
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