Elderly mother has sundown syndrome. Acted up each of her first eleven days at a nursing home while hallucinating and wanting to go home. Zero ability to care for self. She was scared and confused. Was discharged for behavioral problems and sent to emergency room. They refused to take her back. She has been in hospital six weeks since then because no facility will take her ,despite her disruptive behavior improving. Doctor indicates she is a normal dementia patient in final stages of dementia.. She needs memory care unit he stated but none will take her, even non memory care facilities wont accept her. Case manager suggested skilled nursing home instead but it’s private pay. She will be put back out in year and half when all funds gone. Some of the initial Facilities considering her wanted her to go to geriatric psych facility but hospital dr refused. Hospital psychiatrist also didn’t feel she should. She is frail and under 100 pounds. Worsening condition. Very well cared for in hospital but no activity in a hospital room and deserves to be on a dementia unit. Believes she is on a ship out at sea and is commander of her ship. Doesn’t recognize her family sadly. Hospital agrees she needs memory care facility but all facilities refusing her, She’s perfect candidate. She was on IV anxiety meds but no longer is. We need nursing home facility with memory care which accepts Medicaid although she can private pay for year and half. We can’t have her run out of funds and be tossed out again with no where to go. Son works full time and is nearly sixty. He has his own health issues.How do we get a Pennsylvania nursing home to accept her when 26 said no? Case manager is out of options.
So mom has abt $130,000 - $150,000? Maybe $175k?. More? Thats the range for 18 mos of private pay. Year & 1/2 @ $8k= 144K.
Plus whatever income she gets each month from her SS or other retirement.
So is this the situation?
if so, why are you looking / insistent for a place w Medicaid beds?
Theres going to be a private pay psych facility somewhere that will take her at $20-$30K a mo. She has the $ to private pay.
Even if only for 6 mos. It would get her out of the hospital; get her medication management under control. Then once she’s truly impoverished so eligible for LTC Medicaid, she moves out & into a traditional NH & a Medicaid bed.
So if there is $, Why is her $ not being used for private pay?
Please keep in mind that should discharge planner at the hospital get over the situation they can involve APS in her case management. This will morph into APS asking the court for an emergency ward of the state order on mom. Judges grant and name a temporary guardian who then gains control over decision making & her income & assets…. They will get her into a facility and use her funds to pay for care. Family is not necessarily included in any of these decisions. Ward of the state happens. The guardian can file for POA removal from everything they are signatory on and review all actions in detail as to if they did not do proper fiduciary duty as POA. Stuff like this snowballs…. you really don’t want this to happen
If right now mom truly has “year & 1/2 of $ for private pay”, it needs to be used to place her into a private pay facility. There will be one who will take her in the region.
So again, why isn’t her $ being used to private pay in a facility? There will be one who will gladly take her $ even if a state away.
My mom(91) also has dementia but just mostly highly delusional, dosen't know family anymore and occasional accidents that refuses to wear diapers! She is mobile but wobbly and needs a cane or walker. Physically still in good shape and good blood work(thank god).
I have sever spine degeneration myself and already burned out after 4 years of home care by me only 24/7! I have been having sever anxiety and depressed bc of not having any breaks at all. My mom has Medicare and Medical(California Medicaid) and zero assets for any future facilities. I stopped working to care for her and my poor husband has to work 3 jobs now! We both are so burned out that makes me extremely worried. No breaks or vacations for the last 4 years just work! If I show any exhaustion, she says are you trying to get rid of me? I don't know what to do presently to at least get one week away without any issues!
I have to prepare myself for all of the above for near future! The way things are going down fast, I'm very scared and anxious for planning for her future care, especially after I read all of these posts! Considering my own health too which is not good, I need to do something fast to put me at ease so my physical and mental conditions won't get worse.
I'm not familiar with any of these facilities functions and what applies to my mom's condition that I should consider. You said a case manager could make it easier for the right placement. What procedures do I have to go through to have one? Does Medicare Medicaid pays for it? Which care facilities take her first usually or I should consider first?
Please walk me through as I'm completely uninformed and confused about these steps.
The hospital is playing a game of chicken with you and the psychiatrist who saw your mother is part of it. It's normal, but not broadcasted about, for hospitals to have deals with certain care facilities. An elderly person who cannot live at home anymore and whose family isn't taking them in ends up in one of the facilities that has a deal with the hospital. Who knows what palms get greased from this arrangement but they do. The facilities are ALWAYS cash-pay at first too. Maybe elderly patient gets a few days on Medicare, but it's only a few. Then after all of their property and every cent they ever had is handed over to the facility they accept the Medicaid. With difficult and hard to care for elders, their facility stay will be temporary for the cash-pay until it runs out. Then they get dumped back in the hospital and the game of chicken begins with their family or whoever in in charge of them and their assets.
The reason why I know any of this is because a friend of mine who at the time years age was a medical student in a hospital and he found out quite by accident.
Don't back down. I never heard of a care manager telling a person skilled care is private pay. Medicare pays for skilled facility care up to 100 days. If your mom is off the IV and doesn't need skilled medical care, she needs psychiatric care. That too is covered by insurance. Don't back down with these people. They will put her in psychiatric if you don't agree to anything else.
I was living with my mother, as I had moved back years ago after quitting an extensively stressful nonsupportive job Communed to a new job from parents home home but had to leave that in 1997 and go on disability.
Things got worse and worse at home as mom aged. She was very stubborn, wouldn't accept a wheelchair and was walking terriblly and falling with a cane..
Fell at home in April 2020 and became bedridden and incontinent.
Went into a snf and medicare paid in part for 100 days. I decided to take out a medigap plan after she went into the SNF as costs prohibitive. The SNF refused to fill out forms for her flimsy LTC insurance and lawyers wanted 400$ to fight it. Decided not to fight it as the LTC policy was written decades ago and no inflation rider so would barely cover LTC fees anyway.
So paid out of pocket for AL facility with an enhanced license but only paid for two months when I brought her home..... Costly and pandemic isolation.
Got her on the first home hospice when saw some abnormal blood tests done by doc at al but never followed up on. Took her by ambulance to the hospital and she cane home on home hospice... Dementia bedridden incontinent abnormal blood work i didn't worked up in length and I said no to chemotherapy in yet another snf for a woman already close to 95 years old.
Got her on home hospice with me the primary caregiver. Didn't want her in a super expensive private pay facility and first snf used up all her rehab days for that benefit period.
As the primary caregiver of her and living in her house, it was stress beyond my wildest dreams and I am still in desperate depressed state filled with anxiety.
I would change diapers and try to clothe and feed her.....hardly ate though and was emaciated.
I listened to bizarre delusions, hallucinations, constant calling out for me and dead relatives. She could do no adls so tried to do everything for her.
Developed c difficile one night and I couldn't keep up with the diaper changing... Called 911, Nast doc and social workers at hospital.
Treated for c diff in hospital but very weak and still on isolation precautions there and they wanted me to take her home to a spore infested hospital bed. I said no so she went to another snf for end of life care. They wouldn't let hospice in because of pandemic and were enormously expensive. Social worker said after about a month why don't you take her home?...... I did and tied to care for her at home on home hospice. Enormously stressful..... She didn't remember my name, couldn't have a conversation with her so demented. Enormous phyisal and emotional toll on me..... Lost 40 lbs from thr 120 s to the high 70s and now 80s I was so overcome with grief.
So basically snf wanted her out and I struggled with home hospice.
Behaviisl issues disorientation bedridden incontinent....... I was having a nervous breakdown and still am after her death in March 2021.
She wouldn't let me move out of her home for decades to downsize and get a stable place with her going to assisted living....... Refused...... Then as I said fell again at Hone.... Snf etc etc. Eventually home hospice as snf wanted me to take her home and I agreed.... Phenomenal pricing there..... Taking care of at home with limited hospice was ire shear hell.
This woman would talk to herself, bizarre delusions talking to me....
Incredibly high maintenance as incontinent and bedridden.
I was burning out taking care of her at home but snf private iin ny more than 20 k per month private pay.
Couldn't find her documents to apply for medicaid as lawyer had originally wanted..
Became worse and worse at home and hospice refused their inpatient unit.
Two days before death unable to swallow or turn over in bed. I couldn't get the diaper on under her. Died match 2020. Where to live for me?
The care home was very nice, better caregiver/resident ratio and was cheaper than the facility she was kicked out of.
If she is a danger to herself and others memory care and nursing homes will not accept her. They are responsible for the safety of their residents and employees. Her behaviors have to be addressed and treated first.
Have any meds been prescribed to begin to try to treat her?
If MIL is now stable on psych meds that are oral, most NHs who accept Medicaid at all should be willing to take a patient with a year of private pay funds.
Is she on Hospice? One thought is to get her on Hospice and see if the Hospice organization has a NH they work with who will accept her.