Getting Ready to Place My DH in a Skilled Nursing Facility
Just found out my DH is in the late stage, not end stage AD and needs 24/7 care. He is now in a behavioral center to see what meds he needs to keep him mellow. He's been there since May 11 and all I do is worry about him because he can no longer carry on a conversation to let you know if there would be something wrong, because he doesn't talk sense anymore, gibberish talk. The facility does seem to be good & caring. I was told he would not be able to come home anymore and he will have to go to a skilled nursing facility when they can figure out which meds he should be on. This is all killing me!! I can't stop crying and it's hard to pick the right place because I have been his caregiver for 6 years and nobody will be able to care for him like I do. The nurse at the behavioral facility told me it's time to be his wife and let the professionals be the caregivers for him. It's very hard for me to accept all of this. She told me it's ok to cry because I am grieving!
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Welcome to the forum. It's very hard, but there are many of us here who have been in the exact position you are in. My partner has been in memory care for two years now since a psychiatric hospitalization. Let yourself grieve, i think the social worker is exactly right. You can still be his dear wife and advocate even though he won't be living at home now.
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Are you physically able to care for him? Are you able to be home with him? If so, have you thought about hiring some in home help? With the right medications he may be easier to care for than he was before he was taken to the behavioral center. Do you want to take care of him at home? There are many members of this forum that care for late stage spouses in their homes. I’ve received so much help just reading posts here, more than from most doctors. This is a great resource.
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My DH was moved to a Memory Care facility on April 1st, and overall things are going ok……until yesterday. Back in February when I was getting ready to place him, I spoke with the facility administrator about how to fill out Medicaid forms. She directed me to someone that could help, and we had several discussions about Medicaid. When April came around and move in date approached, Dh's Medicaid had not yet been approved, so I had to pay out of pocket. Then May came, and I once again paid out of pocket. His Medicaid has now been cleared and a meeting was set up to get all of this taken care of. Suddenly the administrator says that DH is not allowed to stay in the facility if he is on Medicaid because he is there as a private pay resident and they have a long waiting list for a Medicaid room! She is stating that he will need to be moved to another facility! I was just getting him settled into a routine and all at the facility and now they're kicking him out. I am furious. There was never any discussion about him needing to be on a waiting list for a Medicaid room, or that the only rooms available were for private pay. We have a meeting on friday and I'm just not sure what is going to happen.
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I understand, and I am crying with you. I placed my husband in MC two weeks ago after finally admitting that I couldn't take care of him at home. Some days it seems unbearable. Remember that you can still visit him, hold his hand, talk to him, hug him. Think carefully about bringing him home — remember that he is safe where he is. That's been the biggest comfort for me. Sending you virtual hugs,
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I am so sorry this is happening to you and your DH. You need someone to attend this meeting with you for support and you then need to make it very clear that nothing was ever mentioned about his having to move once he was receiving medicaid. They were very negligent if they let this occur without your being fully informed. My prayers are with you and I hope you prevail in getting a medicaid bed.
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CStrope, I can only imagine how devastated you feel. Agree that it might be helpful to have someone go to the meeting with you, if possible. I fear they will claim there was some "small print" in the contract that you overlooked/didn't understand. If you have any records or emails from the facility related to the Medicaid application when you filed it, perhaps those would be helpful.
Please keep us posted what happens, I am sick for you.
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Consider reaching out to someone in state government (the attorney general's office?) about this bait and switch.
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Depending on how things work out, I can think of a number of the you can try.
You may want a lawyer present at your next interview with the facility.
In some states Memory Care facilities are supervised by the State, perhaps by Public Health. They may want to take a hand. You can also ask your state rep or state senator to contact the facility and express disappointment in such behavior.
In some areas, local TV stations have reporters who specialize in investigating and resolving consumer complaints. A little bad publicity may be just the encouragement the facility needs to do the right thing.
Here's hoping things turn out all right and quickly.
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@AgeMaven @sandwichone123 @M1 @KarenMC Thanks all for the responses. I found some articles last night about the fact that many facilities, since they are now corporate run, are requiring 2 years of private pay before allowing any Medicaid assistance. There is even a trend of facilities kicking out long term residents that have exhausted their life savings while staying in the facility, and now need help from Medicaid.
What has our world come to.
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I have a friend who works in long term care, specifically with families as they are going through the process of admitting a PWD, reviewing finances, etc, so she is knowledgeable on this topic. She advises contacting the ombudsman and bringing that person on board to assist in sorting this out. Provide the ombudsman with copies of all written communication between yourself and the administrator, and any other facility employee who was assisting with the Medicaid application, as proof they were fully aware of your intention to immediately seek Medicaid assignment, ie they knew you would be doing private pay for only a short time. Review your contract to see if it contains any reference to a required private pay period before the facility will accept Medicaid assignment. And if after all review, the facility still says your DH has to continue with private pay or leave, they cannot just kick him out. They have to keep him there (hopefully paid by Medicaid) until you have secured a new placement for him.
My friend also said that sadly, due to limited Medicaid beds, some families find that even after doing private pay for the required 1,2 or even more years - there is no Medicaid bed available in their PWDs facility.
Frankly, the lack of policies in this country supporting care for persons with dementia and other long term conditions makes me want to cuss.
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Kibbee thank you for the information. Just got home from meeting with the facility administrator and the nurse and rep from our Managed Care Organization that will handle the care of DH now that he is qualified for Medicaid. He has only been in the facility 7 weeks, and has already had several med changes, not to mention the dramatic change of moving into a facility from his own home. There was not a 30 day care plan meeting as stated in the information they gave me when he was admitted. They also told me last week that his outbursts and any agression he shows is not that bad and they can handle it. 15 minutes before our meeting today, The facility administrator called me and said that someone from their corporate office was there yesterday and witnessed him smear fecal matter onto the wall and onto a table that he touched. They also saw him slap a staff member when she was trying to make him go somewhere he did not want to go. Now, I am by no means condoning his behaviour, but he has FTD and this type of situation is extremely common with FTD and should be addressed differently. They know to never try and force him physically to do something…big no no. And the fecal matter was because they were not monitoring his bowel schedule, so he tried to take care of it himself and made a mess on his hands, which they didn't notice and clean. Anyhow, the Corporate rep told them that he is a danger and that he is kicked out in 30 days. The MCO reps discussed regulating his meds better and better watch and documentation of his bowel movements and needs. This is a very trying situation for all involved, I can't imagine how hard it is for the staff. But isn't this what they are supposed to be trained for? And isn't this why it costs so much money?? I asked in the meeting, well if this facility isn't the appropriate place for him, then what is. The MCO rep piped in and said this is the exact level of care that is appropriate for his needs.
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Is there a definitive plan CStrope? I fear that they are just going to run out the clock on you. Does he need hospitalization for medication management? Pulling for you....it seems pretty obvious that you can't bring him home. Did the MCO rep have other alternatives?
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This is very similar to what happened to DH. There were behavior issues. When I offered to get him back into the VA Geri psych, they said it wasn't that bad. After 3 incidents they asked for a care planning at 4 months; the 30-day never happened. In the midst of this, meds were changed. At the meeting they wanted us (son attended) to help them with solutions. An incident where he hit another resident which left a "mark", got him transported to ER on the 3rd of the month. He was admitted to the psych unit. On the 7th I received a phone call saying I would be receiving a letter that he would not be allowed back. On that same day they made sure they took that month's payment out of our checking account. I'm still trying to get the refund that I was told would take 30-45 days. That was 2 months ago.
I've decided these places are a scam. Even though you fully disclose behavior issues, they promise the moon and will tell you anything to get the person in the facility. They want compliant residents who are easily managed. If the person is not easily managed, they will find the first available excuse to evict them. I'm so sorry you are dealing with all of this. I'm hoping for the best for you and your DH, but I'm not holding my breath. (((hugs)))
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so where are you at with your DH now???
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In WI they can't legally kick him out until there is somewhere else for him to go. So the MCO (Managed Care Organization) will work on finding an alternate facility, all while trying to convince the current facility that once his meds are properly regulated his behavior will improve.
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CStrope, DH Passed on April 17th. I've found with him that an uptick in behavior issues came before a drop in functioning. I'd only realize it in hindsight, though. It was a short quick downturn after a psych admission and finding a new placement. Aspiration pneumonia, possible stroke, and tumors along spine in upper back.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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