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Hi everyone, I've been lurking here a bit, this is my first post. I really appreciate any thoughts or advice anyone may have.


So my Dad is 71 with Parkinson's disease. For the past year or so my sister and I have been having him stay at each other's homes, because it was clear he couldn't be alone anymore. In that time he was mostly ok, just needed help with meds, meals and things. He would have times of confusion and anxiety but nothing really bad. Last month I took him to the hospital because he was having a pain in his leg, making it difficult for him to walk. He was yelling out, crawling on the floor. The doctor referred him to a rehab facility, where he is now. He was at the hospital for 3 days. One of those days he did have a severe incident where he got extremely agitated and combative, thinking people were out to get him and the hospital staff was evil. He mostly got over that the next day and was back to his old self. He is normally extremely easy going, cooperative and sweet. Always saying thank you when I give him his pills, a meal, or whatever. The first couple days in the rehab were a bit rough, not as bad as that day in the hospital but still agitated, thinking there was something bad going on there, etc. He has mostly calmed down off of that but his dementia has defenitely progressed. He frequently thinks he is in Miami, Japan or somewhere else. Very confused as to what is going on, asking the same questions multiple times, etc. I was trying to get him into a nursing home but apparently someone at the rehab diagnosed him with paranoid schizophrenia. My Dad has never had any mental health issues his whole life until now. Both the social worker and doctor at the rehab feel this is an incorrect diagnosis and are going to re evaluate him this week. The problem is the nursing home I was hoping to get him into will not accept him after seeing this initial evaluation. The problem is that because of the Parkinson's he does have significant mobility issues, and needs alot of help with things like dressing and toileting. But with the mental health stuff, alot of nursing homes won't want to take him. I'm looking into hiring a geriatric care manager to help me place him but I'm so lost in all of this. He has passed the medicare covered days in the rehab and I'm keeping him there on private pay for now. I don't know if I should just take him home or what. I appreciate any thoughts or advice anyone might have. Thanks

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Heads up: There are multiple people on this site who automatically shame and judge people for having their parent placed. Take them with a grain of salt!
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Reply to LoopyLoo
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I’m so sorry. This is a terribly difficult and sad time for you.

i took care of my parents at home, so that’s my personal best advice. Your dad responded well there and cooperated with family members, he was likely more comfortable, received high quality care and personalized attention in familiar surroundings.

At his age and in his condition, It is not unusual to be disoriented in an new/confusing environment such as a hospital or rehab facility. Doctors and nurses are coming through frequently, the sounds and smells are disarming, lights are on 24/7 and it is difficult to rest. When he needs help, it is probably difficult to find. His medication may have been adjusted. He may have had a bit of a tantrum, or maybe one of the workers caused him to feel panicked and he lashed out. If he comes home… a week or so after he returns, things will settle down and stabilize (the first few days back at home could be tough).

Since I did take care of my parents at home until the end of their lives, I know how difficult this can be.

I was very lucky because I had some flexibility in my schedule and could take care of them personally (I was in a situation where I did not require pay for my caretaking)—-and also was lucky because my parents were able to afford private CNA care so that I had some scheduled breaks. (There was no sibling support or assistance.).

I’m not going to sugarcoat this —This still was extremely difficult and often times frustrating, sad, frightening, and unsettling. This was a financial sacrifice for me. There were many glorious days snd bright moments too, but i found watching my best friends decline was at times torture. That being said, I still feel it was the right choice for them —and for me.

You need to do what works best for you in your situation, which only you can decide.

Take a look at some more places to help determine what is best. Don’t threaten your dad — that would be too stressful and he is emotionally fragile. Surround him with familiarity and comfort as much as you can. Just do your best.
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Reply to ACaringDaughter
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Whatever happens DO NOT TAKE HIM HOME - you cannot handle a situation like this. Tell rehab you are NOT taking him home and they MUST find a place where he can be moved to.....this is their job, not yours. Stand firm and do NOT give in.
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Reply to Riley2166
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My husband ended up in the hospital also and because they labeled him a falling risk I was unable to place him, I was working with a social worker at the hospital and she had no luck ( told me I was on my own ) I got up the next morning and called over 40 facilities and found one kind person that was able to place my husband that day. It is a private pay facility but until he gets his anger under control I will not be able to place him in a medicaid facility . Do not take your father home because that's what the hospital wanted me to do. I am waiting for a good report card regarding my husband then I will definitely be moving him. Hang in there !
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Reply to JSunny
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Mrose1: Imho, perhaps your father should be seen by a geriatric psychiatrist. That possible misdiagnosis should be wiped from his record - speak to his PCP to have that accomplished.
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Reply to Llamalover47
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The Very Best and Safest Place he could be is at home.

When he's in the Hospital, ect a lot of times they are given meds to so call calm them or so but it does have other effects on them like being Agressive ect.

My 96 yr old Dad only gets not himself when he has a UTI Urinary Track Infection.
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LoopyLoo Sep 28, 2021
Wrong. Home is sometimes the worst and unsafe place. Not because the people in the home are bad, but because their parent needs more expertise and medical monitoring than can be given at home.
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Wait until your father has his psychological examination. He probably had "hospital psychosis" with lack of sleep, all the new experiences, and being overwhelmed by it all, This is actually very common for older folks - and a few younger folks as well. After his examination, ask the the social worker to help you with your dad's placement.
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Reply to Taarna
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His doctor should be working NOW to get that off his medical record. Refer facility to talk to his personal doctor to get clarification of his health status in regard to his denial of admission.
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"I keep thinking that maybe if I do take him home, the mental issues might get a little better, with him being in a familiar place. Then I worry about him not being able to walk around, my house is not equipped to have a wheelchair."

Time for a bit of tough love here. Wheelchair access is the least of your worries.

- There will be no dinners out, no vacations, very few breaks. Can you handle that and working (assuming you have a full or part time job)?

- When will you be able to do basic errands like grocery shopping? You can't leave him alone and it's not feasible to take him with you.

- What will you do when Dad gets combative at home, you can't handle it anymore, and you have to go through the whole process again of finding him a place?

- What happens if you, God forbid, get sick or injured? Who can step in at a moment's notice for what could be weeks or months?

- If Dad becomes incontinent, how will you handle it? Will you be okay with having to wake up several times a night?

- 71 is not all that old. He could live another 20 years. Are you willing to care for him that long? People are living longer than ever before, even with Parkinsons.

- If he starts wandering, what's your plan?

- Do you have pets? How will they acclimate? Would he harm them?

- If you quit work to care for him, how do you plan to get back in the workplace after you've been out for years? Can you afford to do that?

On some level you may be hoping Dad will go back to his usual disposition before all this happened if you're around. Not 100% of course, but some reverting? (And I don't blame you; I would want to hope too.) This is very unlikely to happen. Unfortunately the Dad you knew isn't really there anymore. It's awful and I wish it on no one. It's like you mourn twice. For his 'self' and then when his body dies.
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Reply to LoopyLoo
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My dad had paranoid personality disorder and his vascular dementia made him venerable to panic attacks where he thought people were out to hurt him and he was going to die. The most calming thing seemed to be when I sat beside him with my arm around him and we sang some of the songs he taught me as a child. When Dad would state someone was out to get him, I would say they didn't mean to upset him and they were trying to be helpful; he would explain how they weren't helpful (a few times) and then usually drop it.

Maybe this will help you develop a way of better calming him.
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Reply to TNtechie
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I have worked in the mental Heath field for 40 years, and have a sister with schizophrenia. No one develops schizophrenia in their 70’s ( or 60’s, or 50’s or 40’s) .Insist this mistake gets removed from his chart. I would threaten the diagnostician if you have to, bring along a qualified mental Heath provider. So sorry you’ve had this unnecessary hurdle during this difficult time…..
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my2cents Sep 26, 2021
You're correct. Too many asumptions/no testing get put on people's charts and comes back to create problems later on. My mom's dr didn't know what was wrong with her over about a year and a half period of time...multiple runs to the er, etc. I finally figured it out on my own. Too much glipizide lowering her sugar too low. They had doubled her dose when she was in the hosp one time. I called and asked why. They said she needed it. I had no idea what low sugar did to you at the time. Her dr wrote ischemic strokes in her record. When I asked why that was there, he said don't you remember all the trips to the er and her confusion??? I had to remind him it was the double dose of sugar med. To this day, that old diagnosis is there even though I told them to remove what was only a 'guess' as to what her problem was. Never tested. Nothing.
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If he’s 71 and a veteran, ( same as my husband), was he in viet Nam? Was he exposed to agent orange?? If so he qualifies for free placement with the VA. Agent orange was proven to cause Parkinson’s disease and other dementias .
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Reply to Katefalc
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No. Hospice is for someone with a life expectancy of 6 months or less . Take him to a veterans hospital near you. He will be assigned a case manager and they will place him
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My husband was combative in nursing home. There may be good nursing homes -I have not seen or heard of any in large city we live in.

Nursing home staff say the same thing - “Same issues - different box”.

I managed to get him to a geriatric psychiatrist who was able to manage behavior with meds. I managed to bring him home early last year and the behaviors went away and medication was able to be stopped.

There are many things in nursing homes that contribute to combative behavior. There is non-stop noise making it impossible to rest. There are constant interruptions at night interfering with the ability to obtain adequate sleep cycles. During day no rest either as constant interruptions.

There is very, very few activities to keep one occupied. The boredom is crushing.

Staff rotates and there is always a stranger (from patient’s point of view) trying to perform care. These constantly changing approaches can be disturbing to anyone.

Only you and your sister can determine if you can provide home care. It is arduous work.

Bottom line is a psychiatrist who specializes in geriatrics may be able to manage behaviors and make care easier regardless of where he is.
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Reply to BrendaJayi
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Cover99 Sep 26, 2021
There is activities in NH. the tv
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I think your dad might have Parkinson’s with Dementia or Lewy Body Dementia. (Depending on which came first)
my husband had LBD with hallucinations delusions .. he was very agitated ,aggressive , combative … he needs to be properly evaluated by geriatric physician /neurologist … and needs some meds (seroquel not the newer antipsychotics as they can make everything much worse)
unless he’s diagnosed and treated by a specialist .. you’ll get the run around looking for help.
look for proper memory care after he’s stabilized!
falls hospitals makes things a lot worse .. and they usually decline !!!
but you came to right forum … we’ve
lived this and often know best !
not all dementias equal and this one
really difficult.. my husband same age …
best of luck
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Reply to Helenn
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I know exactly the emotional pain you are going through. You want the best for your dad and you know being at home is best for him because of his mental and emotional issues. I also had the same situation, I took care of my dad for 10 yrs in my home 24/7, worked full time the first 7 years. In those years I was able to work at home most of the time. The last 3 years I was home with him. Because of his aggressive behavior he didn't qualify for most nursing homes, and the ones he did were beyond terrible. Toward the end of his life I had special equipment to help me move him and get him in a chair or bed after falls. He weight about 165 lbs and the equipment was heavy and awkward for me to work with. I destroyed my health and am still trying to get back to normal 6 years later. I was the only sibling of three and the other 2 did nothing to help me,, not even visit him. After he passed there was a 3 year lawsuit, one of issues was I had taken a salary the 3 years I was home not working. If I had gotten a cna certificate it would had been a non issues because I would have been a licensed trained professional to work with him. After all is said and done, Twice I had him in respite care and both times he fell, once from his bed and once from his wheel chair. He was injured both times. His last 9 months he did have to go into a nursing home, and to insure his safety and keep him calm and non aggressive most of the day I spent 4 to 5 hrs there. After all is said and done, I would do it again, more wisely, because I gave him a peaceful and happy life and I haven't any guilt about him being hurt in a nursing home.
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Reply to Carol48
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Hi Mrose.
Has your dad’s medication been changed lately? Or maybe the current medication he’s on is no longer working for him and thus causing these new issues?? If it were me, I would bring him home with me. His insurance should provide in home PT and OT after leaving rehab, so you’ll at least have that for awhile. What’s nice about this is they’ll come in an assess your home and then you’ll know if your house can accommodate him. Have you looked into what the VA will provide for him at your house? He might qualify for in home care.
Let me know if you’d like to chat, I have a lot of experience with home care as I have my 93 yr old mother still living in her house, basically on her own.
:-) Susan
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Reply to Gettinghelp
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Mrose, any update on how your dad is doing?
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Reply to BarbBrooklyn
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I know you need help but I would not want anyone I know put in a nursing home during the current change in care concerning covid. He will be inoculated and it could result in a negative outcome. He also seems to not want to be in a care facility. In all reality these places care about the money they receive and not the people in their care.
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Reply to Sierramuse8
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LoopyLoo Sep 26, 2021
MRose, please don’t pay this comment any mind.

The Covid vaccine is safe. Hospitals aren’t full of people who had a bad reaction to the vaccine. They’re full of the ones who refused to be vaccinated. To be eligible for the vaccine and not take it is ignorant and selfish.

Not ALL facilities are hell holes who only care about money. The father may not want to go to a facility, but he needs to be safe and it’s more than OP can take on.

Maybe you could step in and care for him instead?
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I can only tell you that both of the rehab places my mom was in had geri psychs on staff. They were a winderful additiin to her "team" in both cases.
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Reply to BarbBrooklyn
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Has dad been seen by a geriatric psychiatrist? That's who needs to assess him for meds.
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Mrose1 Sep 22, 2021
No he has been seen by the doctor at the rehab, I’m going to meet with her tomorrow. I don’t know if a Geriatric psychiatrist will come to the rehab I’ll ask but I’m afraid if I take him somewhere else for an appointment the rehab won’t take him back.
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So today my Dad was flipping out at the rehab like he was the one day at the hospital. The past few weeks at rehab he’s definitely gone downhill with the dementia, confused about where he is and what’s going on, but he’s mostly been calm and cooperative. Today though they called me and he’s been angry and combative again. Refusing to listen to anyone, asking me to call the police or national guard to help him because doesn’t trust the rehab staff. They called me to try to calm him down but just like at the hospital, nothing I say makes any difference. He gets angry with me too, saying I’m helping them torture him, how dare I do this and not help him because he was always so good to me. It is breaking my heart because he always was such a great Dad and I can’t do anything to help. I don’t know what to do and I’m so afraid he’s going to end up in some totally crappy nursing home because no one else will want to take him.
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Helenn Sep 26, 2021
There are wonderful care homes . .. where your dad would be safe and well cared for !!!
with plenty people and activities …
not isolated and alone …but expensive … use your dad’s savings
to get him care he needs …
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IMO there is no one at the Rehab that has the ability to evaluate your Dad for a mental illness. Not even a Neurological consult, for the short-time the Dr. would be there, could diagnosis schizophrenia. Parkinsons and Dementia go hand in hand. Doesn't Dad have his own Neurologist? This is the person who should evaluate him for a NH not doctors who have no idea of his history.

Every time my Mom was in the hospital and Rehab I gave them a list of her doctors, phone #s and specialty. The day Mom was being discharged from the hospital, I went to pick her up and was told they were waiting for a neurological consult. I asked what Dr. was called in. Someone I had never heard of. I told the Nurse that I had listed Dr G as her neurologist, who had privileges at that Hospital, why would they call in someone different? Why didn't they call me? They called Dr. G.
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Mrose1 Sep 21, 2021
So the issue is that my Dad's doctors are all at the VA based in the city my sister lives in. I live about a 3 hour drive from her. My sister and I have been switching off having him stay with us for a couple months at a time. I know this isn't the best for him to be going back and forth, but we were kinda putting off placing him due to covid and we just couldn't bear the thought of putting him somewhere and then not being able to visit. The plan was to bring him back to my sister in October and then work on getting him placed. Since his neurologist is not in my city, they haven't been consulted. I have put in a call to them to see how they can help from here.
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Do not take him home because you will not be able to take care of him. The rehab facility will find an appropriate place for him if you have to get state social worker involved to help you but remember you absolutely do not have to take him home.
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Reply to mstrbill
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Mrose1 Sep 21, 2021
Hi thanks for your comment. I keep thinking that maybe if I do take him home, the mental issues might get a little better, with him being in a familiar place. Then I worry about him not being able to walk around, my house is not equipped to have a wheelchair.
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Mrose, could have written that myself. My dad, now passed away, went through a similar combative stage. It seems that the Parkinson's can really kick up the aggressive aspects of the dementia especially when in the hospital. I was able to take him home after a couple of hospitalizations and he did fairly well, but after one stay at the hospital and then extended stay at rehab my attempt to keep him at home failed after about four days. He was too far gone mentally and we had him at in-patient hospice care. You can try at home, your dad may not be as far gone as mine was, but I can see the road you're traveling. Good luck, best wishes, and hugs to you.
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Mrose1 Sep 21, 2021
Hi thanks for your hugs. I'm not sure if he's quite ready for hospice. Aside from the mental issues and the pain in his leg, he doesn't have any other health conditions not related to the Parkinson's. The hospital checked his blood, urine, gave xrays, everything was clear. Can a person get put on hospice just for these mental issues?
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