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
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.
Maybe this will help you develop a way of better calming him.
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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