Hi, new here. My father has Parkinson's and has had it for several years. I'm wondering if anyone has similar experiences or can point to resources that may deal with this.

Before autumn, he was able to walk around the house on his own or go to the front yard, etc. He would have occasional fainting spells (presumably from his blood pressure changes) and some motor problems but still very functional.

Towards the end of fall, he got COVID and was in the hospital for almost a month. The only places he had been was an ambulance and the hospital and my mother didn't test positive until days after he did. So he likely acquired it from the ambulance or hospital (even though the hospital staff swear there is NO way he got it there).

While in the hospital for COVID, he had some delirium but snapped out of it while in the hospital once he recovered.

He came home and his physical strength was diminished. He was recuperating pretty well with physical therapy but his blood pressure changes were frequent. Passed out a few times and really slow to regain consciousness.

He went back to the hospital when he passed out 2x in one day. We were not allowed to go with him or visit due to COVID restrictions. Within a few days, he started sundowning and was combative at night. He even fell in the hospital and was also restrained. We called the hospital repeatedly and couldn't reach him for a day or so. We found out later that he had asked to speak to us and no one connected him with us, probably furthering his isolation.

After several days (I've lost track) we were finally allowed to visit and stay over night with him due to a county rule that allows visitors or people that have cognitive issues (why weren't we offered that before?). It had gotten so bad that they actually wanted us there.

When we went there and started observing them.... let me just leave it at this... a lot of the hardships my father went through at night were caused by their complete lack of common sense. Why would you bust into the room at 2am to figure out what staff needs breaks and talk to the nurse so loud like you're outside and scare the crap out of him and then security has to be called to restrain him? Why would you move him from room to room and confuse him more?

Over the next couple weeks, we watched him decline severely. Delirium/sundowning started progressing to starting earlier and earlier in the day. At some point during this whole thing, the hospital treatment plan switched from blood pressure problems to treatment for delirium and I have no clue why they didn't just send him home at that point. He went from being able to talk to us in the mornings to not recognizing us and being combative with us. His hallucinations were severe and off and on all day (he did not have these hallucinations before this hospital stay). He couldn't feed himself, was fully incontinent, couldn't stand. His birthday was missed. Christmas was missed. New Year was missed.

After almost a month in the hospital, they released him home in this state. The other option they were pushing on us was to send him to a facility. However, everything we read said he needs to be in a familiar environment to recover from delirium.

He has been home for 3 months. Mentally, he has made improvement but still struggling. He finally recognizes us most of the time. He finally knows he is home and not at the hospital or somewhere else. Still sundowning but not combative, just argumentative sometimes. Hallucinates at night but less severe. Memory is strange- sometimes remembers the layout of the house, sometimes not. Doesn't remember certain details of the neighborhood and unless we take him outside to see.

Physically, he is weak. Can't stand for very long. BP is all over the place. Needs help with urinating into a plastic urinal and transferring to a toilet commode next to his bed for bowel movements.

Sorry for the long post. There are a lot of details here and even more I'm leaving out because this is already long.

Doctors are of little to no help. No one is taking responsibility for what happened to him. No one knows if this is a permanent change.

Anyone have experience with this? Is this it? Is this what it is now? We have no lives. 24/7 is about his care. We are not rich and can't afford caregivers. It is only a matter of time before I'm forced to return to work and my mother is stuck with everything and probably has a heart attack because her condition can't handle it. Did you or someone you provide care for experience something like this? How did/do you cope? What resources did you turn to?

How old is your father?
I think age, how long on PD meds, and how many total meds can become a issue..
When my dad hit 80 we needed to assess his misc meds for what is actually helping vs negatives.. Our Dr was good about testing & stopping ones when we told her about issues..

Try our search tool and explore the PD sticky threads, so much info saved in those.. For search use symptom, med or other keyword for best results from past posts..

Many use miralax or such product to keep regular, as constipation is an issue and may block absorption of good things as well as slow the elimination of toxins..

I'm so sorry you all are going through this. I would first suggest you go to the Parkinson's caregiver site, as there is a wealth of Parkinson's caregiver information there, the site is only for caregivers of Parkinson's patients. It is myparkinsons.org, and you will find the discussion forum on the homepage menu.

Second, I would offer that it sounds like you are on the right track. One thing I have learned is that consistency is so very important in Parkinson's. The more constant an environment you can offer your dad, the better he will fare. He is confused and scared, as anyone would be after what he has endured, so give him the time he needs to get back to where he was, and hopefully he will be able to do that Exercise is critical, so once he is able, see if you can get him to exercise so that he can stay as mobile as he safely can.

Having said that, reality can be brutal and you need to plan for what to do in case your dad needs more help than he did before (either now or, hopefully, much later). Every family has their own approach for what works for them, but getting ideas from others can be extremely helpful, which is why I recommended the PD caregiver site. I would caution, though, that people tell it like it is there, which some find helpful but others find too distressing.

Keep in mind that you are doing a great job helping your dad, and if he were able, he would tell you how much he loves you and appreciates your helping him as you are

An uncle of mine in NZ lived with PD for many years. That means I had a duty of care towards him because he was a member of my whanau (kinship group/big family).

My biggest problem was with his medics all of whom had God Medic Disorder which is an untreatable condition.

Vitamin B12 can be very effective for delirium.

Kind Regards
MD

"Doctors are of little to no help" I had to laugh when I read that. The only med that works is sinemet and when you take enough of that to help, your mind goes. All other meds can make psychosis worse. My wife has had caretakers for eight or so years now. It bankrupted her and now I'm paying. There is no financial support from the feds. But we can - I won't go political here.
When my wife has been hospitalized, the night time staff can be clueless or even mean. You did not say how many years your father has had PD or his meds. If it's only for a few years, the symptoms you are describing come in years after dx. Constipation is a problem with PD not Incontinence. Unless you believe covid is the cause of his decline, I would be sure your father has PD.