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Kmi7688 Asked September 2022

Dad is out of control and I don't know what to do. Any advice?

My father (69) has advanced Parkinson's Disease, but does not accept his limitations, and has dementia, although it has not been officially diagnosed. He is verbally abusive to everyone around him, angry at his situation, to the point where no one wants to be around him. The Assisted Living Facility wants him out and I have no where for him to go except a nursing home. I've told him I may have no choice, but he does not understand this and calls me and my sisters horrible names. We have done so much to try and help him, but we are at our limits. We are getting him on medications, but he at times refuses to take them and spits them out. No matter what, he is always causing a problem. I am at the end of my rope with him. What do I do?

pamzimmrrt Sep 2022
My sweet and wonderful father went bat crap crazy literally overnight. Became angry and violent. We had to move him into memory care and it was night and day. He was calm and peaceful, we were able to visit him daily and he was pleasant. But dad had ALZ, not PD. Maybe it;s time for a change in placement
JoAnn29 Sep 2022
Parkinsins people get Dementia in the later stages.
mstrbill Sep 2022
You are doing really all you can do. He may have to go into a SNF if the AL kicks him out. Do not even think about taking him home. Maybe see if the physician can prescribe another medication to help with his mood and behavior.

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Ohwow323 Sep 2022
OMGOODNESS! My Daddy was the same way. My Daddy had to have medication and usually the facility can help with that depending on the facility. When my Daddy was in a big facility they had so many patients that they could not handle my Daddy. So I moved him to a group home. The group home had six patients and a more personal attentiveness. They would call me in the middle of the night and tell me he would not go to bed or whatever the problem was and I was able to talk to him and bribe him to bed, or whatever the problem was. Also, they were more involved with the Hospice and Palliative care people that they could call and get meds within hours. Prayers for you and yours

Krd203 Sep 2022
Oh gosh, it sounds very much like my dad. He is finally in a nursing home with memory care. He is always trying to escape. So far he has been to 4 facilities in 6 months. A total nightmare. It was to the point that he was running out of options. He’s now in a place that suits him better and that he seems more content. It’s further away than the others but it is by far the best one. Don’t give up and look at reviews and get recommendations. Good luck ! Just don’t take him home. I made that mistaking we started all over again.

Beatty Sep 2022
Ask Dad's Doctor to review him & advise what level of care he needs. Here, that often evokes an assessment by someone specialised in this area - Geriatrician or Aged Care Assessment Team.

The choices may include Memory Care or Nursing Care (I'm not sure what is available where you live).

I met quite a few with advanced Parkinson's in Memory Care when I volunteered there. Like with most other forms of dementia, the insight to understand the brain is breaking cannot be understood by a breaking brain. I'd ignore any 'go no contact' advice. The changes to his personality are due to PD. You cannot arrange for this to be cured but you can arrange the right care environment for him.

I hope you can find the right place soon.

geddyupgo Sep 2022
Dad definitely needs an eval by a geriatric neurologist but unless his behavior can be hugely managed by meds that the AL is allowed to give him, it may very well be time to move him to LTC. An Assisted Living facility is just to give an "assist" to folks. Even their memory care may be beyond him at this point.
Get the evaluation and then start to look at LTC facilities specifically those with MC units. As has been pointed out there are several places where you can read their ratings (some of which may be up to 18 months old) but they are a good place to start. Once you find some you like ... then you schedule a visit. From the ones you like....... you make a second visit... unannounced this time. Get the schedules for activities for MC and see if you observed some of them. Visit during a meal time. Notice if anyone is assisting residents who can't eat. Use your eyes, hears and noise to investigate the atmosphere. Deal only with facilities that will guarantee you a Medicaid bed when it is needed. Don't sign any admission agreements that have not been reviewed by your attorney.
Cover999 Sep 2022
This sometimes gets me, "those you like" not the ones the love one "likes", even though the loved one is the one that will be staying there, not the family member that is doing the decision.
Geezlouise1 Sep 2022
My mom also has Parkinson's Dementia and went into memory care a little over a month ago. I'm so grateful for the small facility we placed her in because they understand it takes time to adjust. She's tried to make a break for it several times and became violent with staff. She once tried to scale the wall with her walker in the outside area. She's a tiny little woman, but a force to be reckoned with. They have her on medication now, but she wouldn't take it in the beginning thinking they were trying to kill her. She hallucinates all the time. The police are familiar with our mom and have been very kind. We were worried the facility would make her leave, but they assured us they would help her adjust. We're so grateful to them and have learned to go with the flow of mama's visions. Calls night and day to come get her are becoming less frequent. We fibbed to mom when it came to her med's and said it would help with her balance. It worked. Hang in there and try not to take his anger personally. I know it's hard, but it's the disease. I was upset that my mom physically hurt people. Sweet, kind young workers. They were more forgiving than me. Took me a month to breathe again and put it in God's hands. Tomorrow is a new day. Bless you.

Daughterof1930 Sep 2022
Stop discussing the situation and placement options with your dad. Make decisions on his care without his involvement, he can’t process the information any longer. I’m sorry you’re in this position and hope you can work with dad’s doctor to find a medication plan that works

Sohenc Sep 2022
So sorry you are having this experience. This journey with elderly parents when dementia -- as others have said, Parkinson's often includes dementia in the later stages -- is not fun at all.

My uncle had dementia. He was a kind and sweat person till the end. But this disease ravages their physical abilities (psychological too often -- dementia, hallucinations or delusions). Sadly, your dad likely needs nursing home (or what may be called "skilled nursing," "long term care," or "memory care" that is Medicare and Medicaid qualified (as these two later criteria set in motion a range of things the facility must do/meet and are federally regulated). Assistive living (AL) facilities are regulated by States (each to with its own set of rules) and most do NOT provide the long term medical care you dad likely needs now or will need.

My uncle with Parkinson's had to eventually be placed in a nursing home as he could not feed himself or swallow. He required tube feeding for a while but he passed after a short while. All so say to have to do, watch, etc. but around the clock medical care or hospice is what is needed at some point.

Nursing homes have MDs and RNs there on staff, RN 24/7 and can provide a range of many medical services including tube feeding if needed, wound care, IVs for fluids or IV meds, on and on. ALs do not provide these medical services, unless they have a nursing home unit "on campus" and most do not have this unless they are very expensive "continuing care" facility where one enters with a hefty entrance fee when younger and healthy and w/expensive monthly fees that then guarantee the resident a nursing home or memory care bed on site if/when needed.

I would suggest checking out high quality nursing homes in your area that are Medicare and Medicaid qualified, ask to confirm. US News and World Repots rates/ranks such facilities as does CMS (the US Centers for Medicare and Medicaid Services). Here are several links. Also, your state Dept of Health likely rates/ranks facilities including noting any violations. CMS also tracks violations, "quality" factors, as well as things such as % of staff and residents fully vaccinated and boosted for COVID.

US News World Reports:  https://health.usnews.com/best-nursing-homes

CMS Medicare Search: https://www.medicare.gov/care-compare/results?searchType=NursingHome&page=1&city=Chicago&state=IL&zipcode=&radius=25&sort=closest&tealiumEventAction=Result%20Page%20-%20Search&tealiumSearchLocation=search%20bar

Medicare/CMS nursing home COVID data: https://data.cms.gov/covid-19/covid-19-nursing-home-data

Medicare/CMS quality data: https://data.cms.gov/search?keywords=nursing%20home%20quality

Go visit the bests ones and discuss with the business office people a scenario whereby your dad can be placed as a "private pay" patient first (I assume he has some resources?), facilities like "private pay" for a while. Where we lived the monthly fee for a high quality nursing home is about $15K a month (we are in an urban area on the east coast). If necessary overtime he can be spent down to qualify for Medicaid.

When signing the paperwork make sure to review (perhaps w/an elder care attorney) to NOT SIGN or NOT agree to the contract terms that say: 1) you personally will pay for his care, 2) that you WILL TAKE HIM HOME if he cannot pay, OR ANY OTHER provision that puts you personally on the hook!

Hopefully you have a POA (durable Power of Attorney to to handle his affairs, including financial stuff to be able to pay for the nursing home with HIS RESOURCES first and to handle other things for him like a spend down Medicaid process if needed.) Hopefully, you have an Advanced Directive whereby you can make medical decisions for him if needed as well as you are named as his Medical Agent to be his representative with the nursing home, w/Medicare, w/Medicaid (if a spend down situation is eventually needed), etc. An elder care lawyer could help you.

Good Luck!

BeckyT Sep 2022
My Papa had this. It’s a LOT. Keep reminding yourself that His. Brain. Is. Broken. Nothing he does makes sense anymore, it might makes sense to him maybe. There is not one blessed thing you can do to fix him. Nor is there one single thing that you can do to reason with him. And it absolutely progresses, only progresses. So, with all of that in mind …

Evaluate the life he is living. And the life you are living while taking care of him. He’s not safe if he’s not taking his medication, you’re not safe if he’s angry and aggressive because he could hurt you and not even realize it’s you.

You need to do one of two things, I think:
Get him evaluated by a Geri Neuro Specialist to get his meds figured out. That could mean inpatient while they fiddle with meds and dosages and delivery methods.
OR
Talk to his Dr. about having him admitted to long term care. Papa’s doctor told us that Papa could be put on the right regimen of medicine, including the pain medicine he needed, but only as an inpatient at a facility. What a difference that made!

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