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?
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.
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.
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!
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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