My 89 year old father has advanced Parkinsons on hospice care. He is in a wheelchair, commode, sit and stand, walker with major assistance.
In the past 6 months, it has definitely progressed. You can see it in both hands with tremors and developing hand formations combined with weak leg strength and erratic thinking patterns.
I don't understand this disease at all. Sometimes, his legs are jello. He has zero effort on his part to even try to use them to stand with assistance or with a walker. I ask him if he needs anything, he stares vacantly at me with non comprehension. Then mumbles a yes, ok.
Recently he has decided he just wants to get out of bed and doesn't understand why he has to wait for help, despite the risk of going to the hospital.
In addition, he has had several times when he deliberately slid onto the floor, and pulled himself into the wheelchair or onto the couch with his upper body.
Yesterday, he was 100% lucid demanding to use the bathroom. Our bathroom is not big enough for the wheelchair walker and even with 2 caregivers, it's a serious risk.
He started getting belligerent, incredulously asking how his "family won't let him use the bathroom?". The caregiver myself and my mother (who has CHF) kept trying to redirect him for more than 45 minutes but he would have none of it. We told him to use the superbriefs and we would clean him up later.
But he was appalled at the idea, even though he has been in superbriefs for months with myself and caregivers cleaning him up all the time.
Then he kept trying to get up out of the wheelchair (time a for a seatbelt) and was getting aggressive and angry.
Finally we had him use the commode (with great difficulty.) And he had consciously held in his BM the entire time.
I have never seen this behavior from him before. He sleeps alot, is usually very good natured and kind. Everyone says it's the disease.
Ok, so is this kind of outburst going to increase or become more aggressive? And if so, I am afraid he will get mean, physically aggressive and we will lose the caregivers. LT care in our state is $12,000/month. (gulp).
I am currently out of work, but I have to get another job (hopefully remote) within the next 3-6 months to pay my own bills.
Sorry for the long question. But I am totally new to caregiving and wondering how on earth I am going to manage all this.
Blessings.
I have my eldest brother with this condition that started about five to six years ago after he served in the Army and then worked all of his life, now age 76. He is under the best of care in a retirement facility with a thoughtful nurse providing his LTC at his assisted living level.
My brother Marty can still speak on the phone with me but is limited by his energy level.
Unfortunately, he does not want me to come visit him in his condition, but he has his buddies managing his affairs since I am not a capable agent of carrying out this required Health Directive and Financial responsibilities, so I just pray for him. Marty does not want to see me get upset, so all mine and our family's, plus his friends' prayers reach out to him!
He also has some related dementia. He is the same way as your father. When not lucid, he is more tired and is much more compliant with us doing his daily tasks: bed baths, diaper changes, taking meds, cutting finger and toe nails. But he can't follow a conversation and attention is poor.
There are times when he is much more lucid. He doesn't realize his deficits and thinks he can get up out of bed on his own. He is also more belligerent about having daily tasks done, and would rather not do them at all.
It really is the disease.
Yesterday my husband was very lucid. He saw me limping (hip arthritis) and asked why I was walking that way. I've been limping for a few months, but it was like he saw it for the first time yesterday. He told me he didn't want me to be hurting and I needed to see the doctor. It was the first time in a few years he's had empathy. The dementia had taken that away. I almost cried. He seemed like his old self. He wondered why he couldn't move his legs to get out of bed. I know the lucidity won't last, and he may get uncooperative.
Parkinson's with dementia is the worst emotional roller coaster ride ever.
My husband has Parkinson’s disease and has been hospitalized 8 times since December for unmanageable pain even with higher doses of morphine.
He does not have dementia as screenings and extensive tests showed repeatedly but since December he has delirium on and off.
It is common in later stages of Parkinson as well, the difference is obvious between dementia and delirium.
He is totally rational and highly intelligent person who remembers everything, can recall every detail, event etc. and then during periods of delirium he is completely different person, he is not aggressive but there were few episodes in hospital when he was either funny or silly or a little agitated.
Few times he talked with me as if we were going on trip, asking about luggage, hotel, airline tickets etc.
Also, very important if your father is on levodopa to take it on time all the time, could be less effective in later stages, perhaps ask dr to increase if possible,
it helps with walking, jello legs as you call it is probably myoclonic muscle contraction characteristic with Parkinson’s in advance stage.
Work on doing the tasks you need to sustain yourself.
Article regarding Paradoxical Lucidity, super helpful. These times of clarity remind me of the movie Awakenings with Robin Williams, which brought me to tears.
For Colorado, the Case Manager emailed me and said if he goes off home hospice-Medicare to LTC facility, they pay for limited things like meds and extra CNA visits.
But the bulk of the cost goes through my parent's savings and their retirement accounts. They set up a reverse mortgage last year to avoid having to sell securities at a loss if a big emergecy arises. I will have to talk to tax advisor who specializes in elder care finance as far as their house goes.
At $12,000/month and my dad lives for a couple of years, there may not be enough for my mom, should she ever need these types of services. Then Medicaid kicks in as last resort.
Thank you again everyone. Blessings for you and your loved ones.
From the time we have been toilet trained it is ingrained to use the toilet. Now it is ok to go in your pants?..hard to wrap your head around that if you are having moments of clarity.
Ask Hospice nurse to have the doctor prescribe something for the anger, anxiety. This can be tricky as some people with Parkinson's can have LBD and they can not take some medications.
I have to ask...is your dad a Veteran? If so some Parkinson's and other medical conditions can be traced back to their military service. If that is the case he may get benefits that can help with some of the costs as well as pay you as a caregiver. If he is a Veteran it may also help your mom.
Contact your local Veterans Assistance Commission or your States Department of Veterans Affairs. (You could also contact the VA in your area)
Your Dad is having moments of clarity or lucidity. When that happens he has slipped back into lucidity and knew he needed to get to a bathroom. It is not uncommon for dementia patients to have moments, hours, even sometimes days of clarity.
There is no way to know how long this will last. My cousin called me one day in tears of happiness letting me know her mom was talking. She had Parkinson’s for several years at this point had been nonverbal for several months, maybe a year. Anyway cousin had given her mom CBD oil and her mom stood up from the sofa and said I have to get to the bathroom. Then her mom began to ask her many questions, making perfect sense. This went on for a few months until she fell one day and stopped talking again. I remember that Christmas my cousin took her mom to a party and sent me video of them dancing. It was amazing.
She was never aggressive or mean but if you think your father will be, speak to his nurse about calming meds.
Know that your dad can go to the hospital if needed. He would go off of hospice and then back on when he comes out. Don’t let that hold you hostage on doing what has to be done. This same cousin had to send her dad, also on hospice, more than once to the hospital during covid and to a care home for respite. He didn’t have Parkinson’s but did have dementia.
Here is an article that might be of interest to you. Oh and this article is speaking of what we sometimes call a “rally” which is right before death. But in a few cases I have known of this happening months before death.
https://inelda.org/paradoxical-lucidity-moments-to-treasure-in-dying-and-dementia/
Good luck on the job hunt.
No where do I see that he is on medication for his agitation. If not, why not? If he is then I'd go right back to the doctor and insist on adjusting or changing what he's on. Start here before you wear yourself out worrying about the cost of more care.
FYI Medicaid pays for LTC once he qualifies medically and financially. However -- you mentioned he's on hospice, which usually comes after LTC. Hospice is covered by his Medicare. You have the option of having his hospice happen in a facility so that they are the ones dealing with his behaviors.
More information would be helpful for best guidance.