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.
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.
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)
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.
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.
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.
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 ….
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.
And considering today‘s shortage of such help, this is not very realistic.
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.
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.
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.......!!!!
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’.