Our LO is at the end of life Parkinson's with Sundown Syndrome (13+yrs). Any advice for how to help once LO reaches these stages?

CAGRLS, oh honey, I'm so sorry you and your loved one are going through such a trying time. As a private caregiver for seniors with Alzheimer's/Dementia, I have witnessed firsthand all the symptoms, and then some. The Sundowner's Syndrome was the one that took me down the "dirt road," if you will. Every afternoon at 2:00 pm, she would head for the road, and when asked, all I'd get is "It's time for me to get home." Home was in Virginia, homeplace had been gone. I talked with her Dr., - I did research. What I came up with was this; at 1:45 every day, I'd ask her "you ready to ride?" (you can see it coming) she'd get her purse, empty suitcase, and we'd get in my car. At exactly 2:00 pm, we would hit the road - didn't matter where to - around the block, or an hour ride - but when she determined in her mind that no one was home, she would say; "Well, we might as well go back where we left from." This Lady was 92 years old, very special to me. My car was a Mustang convertible. She would ask for the top to be put down, she'd put her scarf on her head, and tell me, "I'm ready to ride." The ride "home" was filled with her smiles, her giggles, and memories of her childhood days, and a cherry coke. When her time came, I was blessed to be the one with her - we held hands, we prayed, she knew beyond doubt she was loved, she would be missed. When she drew her last breath, she went home with a smile on her beautiful face. Point being; keep him comfortable, let him know beyond doubt, that he is loved. Let him go peacefully, with no regrets, no guilt. If he is at peace with himself, your stress levels will drop rapidly. Let things go his way. Even if you "take a trip, only in his mind," he will find some level of peace within himself. Maybe that will calm him down bout Sundowner's. You're in my prayers....

Prayers to you.

Some parkinsons meds cause dementia and cognative problems. Talk to Dr. about substitutes or.....

I feel your pain. I am experiencing the same thing. Except my father is not with Hospice. My father is 85 with dementia & leukemia. Seems like things are getting progressively worse. I look at him sometimes and just cry when he is sleeping. But I remain strong for him while he is awake. I too am the only caregiver. Its SO hard. I just pray and thank the Lord for him, his love, and the memories. May the Lord strengthen you and encourage your heart to embrace the wonderful times you all have spent together.

My LO is end stages of Parkinson's and we just had hospice start in the past week. They have already been very helpful and understanding and just knowing the Dr and nurses will come here, is a huge load off. They have made sure we have things that we had not thought about (such as oxygen just in case) and have been very supportive. I know how horrible it is watching them go through it. My Dad also has swallowing issues and Dementia and it is heartbreaking.

Just take the time to care of your own health needs & spiritual concerns too. These are the days to be the best daughter to a Dad who raised you when you were a baby. Make sure to treat your father with a most caring heart that you can muster as he is still able to hear of course what you say no matter the stage of Parkinson's. Important to keep him physically altering positions so as not to be stuck in one place for extended hours. I took care of a man everyday for 6 years with the opposite Parkinson's condition. Depression & anger will fluctuate depending on their anxiety so you have to cope with your reactions as not to personalize what they say. There will be many good & bad days depending on any underlying problems like cancer etc. Low iron & feeling cold all the time meant the indoor temperature had to be 80 or 90 where i worked. As he insisted on only wearing short sleeves and did not want to be wrapped in any lap blankets, we did whatever he wanted no matter how much it made us suffer with the heater up so high. Most of the help would run fans in a different room to keep themselves calm. Waking up at strange hours is normal behavior & so is hallucinations. Just listen to the stories they repeat & alleviate them with compassion. Sun up hours might be spent being cold and too tired to do anything. Napping more instead of eating is typical, offer to spoon feed for them or to hold their drinks & have flexible straws. Hospice offers really good ideas for ambulatory things to do. They come when the client is ready & eventually take the client to their facility when absolutely necessary. *This was stressful without Hospice for 3 years but we could rely on an AM person & PM help to create a team. He was a highly intelligent man and aware he was deteriorating so we did not talk about it or in front of him unless he wanted to. We chatted about the weather & the news and what he did in his past. Just tried to keep things as normal as we could and to show him proper dignity. It can be the most rewarding job even though it can be highly stressful to see so many emergencies arise for health questions on a weekend. Increased vertigo or falls & changes to the bowels & bladder are common. You just talk to nurses and learn as much as you can. Hire outside help from the resources available.

So sorry that this is happening to you.  Good to hear he is in Hospice.
Just be there for him and let him know that's it alright for him to let go.
You will be alright.  Let him know you love him very much!  You need to take care of yourself too. Death is never easy for anyone to go through.  It's part of life.  Make sure he is comfortable and whatever he needs they will take care of it.  Try to hold his hand and let him know you are there.
Just love him!  Prayers for you to get through this time of sorrow.

God Bless you!!

Unfortunately, the answer to the “how long” question can vary widely. One of the first clues to watch for is lack of appetite or lack of desire to eat. Then you know the end is truly near. I was blessed to have parents that realized in the early stages they needed to be in a care facility and they moved to a graduated care facility, starting with independent living. By the time they moved to skilled care they were both at a point where they were just existing, so we put them on comfort care only (palliative care). This way if they became ill, we just rested the uncomfortable symptoms and let nature take its course. Dad passed within six months, mom is still going “strong.” Your dad is blessed to have you. Please do make sure you have support for yourself in place during this time. Sending you thoughts for strength, wisdom, and comfort.

If your dad is still able to eat, has no problems with aspiration, this phase could last a fairly long time. Aspiration pneumonia is a pretty common cause of death in people with advanced Parkinson's. You mention he has limited mobility. What about other symptoms? Cognition? Speech? My brother in law, who's in his 70s, has been wheel-chair bound with Parkinsons for 3 years, diagnosed for almost 10 years. He's in a nursing home, but is actually doing OK. His speech quality comes and goes, but he has no swallowing problems and generally has a good appetite. He takes part in all the activities offered, reads, watches TV, goes on outings, etc. I know end stage Parkinson's can be awful for the person with Parkinson's and their loved ones. We've seen others go through it--unable to swallow, can't move in the bed without help, etc. It certainly could be helpful to get a hospice referral and evaluation, but just be forewarned that the "end" may not be as close as you think. Best of luck to you and your dad!

I recommend Hospice if they aren’t already on the case. The end stages of Parkinson’s can be terrible which is why enrolling him in Hospice for comfort care will help him transition at EOL.
Sorry you are in this sad situation.

Is he receiving hospice care at home?

Is your father living at home? What support do you currently have in place? What is his routine?

You refer to his being at the end of life - is this a formal assessment from his health care team?