What can we expect with dad, age 82, with end stage Parkinson's and dementia?

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Dad is pretty much bedridden in a nursing home. When they try to do therapy, he resists. When they move him from bed to wheelchair, he yells. He was even yelling when they were trying to take his shoe off. Could he be in that much pain? While sitting in the wheelchair, he slumps forward and his eyes are closed most of the time. From what we're told by the staff, he eats a decent breakfast (about 50%) but doesn't eat much for lunch/dinner and gets very little fluids and they have had to give him an IV. He's lost about 12 pounds in 3 weeks. We are getting his home ready for him with a live in because we believe he will get better care and may eat/drink more. We're not sure what else to do except to make him comfortable. He doesn't want any life support and has a dnr. If he becomes dehydrated at home, how do we handle this and is it considered life support? What about food? The sad thing is he was feeding himself, although slowly, 3 weeks ago. He seems to have gone down hill drastically in the last 3 weeks. Thanks for your help.

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Hospice is a blessing...listen to all those around. I have them come in for mom with progressive dementia. They are there for you as well as your father. And they will help you make him as comfortable as possible. Lets face reality a little...he's not going to recover..so bringing him home and making him comfortable...is all you can do. Just be prepared for some trials. It's heartbreaking to watch our loved ones in such pain..love him and comfort him, is all you can do and you will feel very blessed when he's gone.
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I see you posted this a few days ago, so although I don't have direct experience with your dad's medical issues, I'll respond and hopefully it will be a little bit helpful.

My mom also would not eat. We tried everything. We asked her what she would eat. We came up with things she enjoyed in the past. We came up with things we wouldn't eat, but thought she'd enjoy (she loved hot dogs and sauerkraut). She would eat a few bites and loved to have someone eat with her. I would joke with her that she was eating like a super model and I was trying to lose weight.

My mom passed away a few weeks ago. She had gone from a size 12 to a size 4 over the past year and a half. What I'm happy about is that I took her to Banana Republic and bought her size 4 corduroy jeans (she loved fancy jeans and was quiet a dresser).

Your dad seems to have very serious medical issues, but I'm just saying since we are not physicians, all we can do is to be good kids and family members. Bring him things that will make him happy in the moment. Hug him, tell him you love him and try to help him find joy. I know that seems hugely difficult but I'm happy that I tried everything that my husband and I could think of in the last few years... Wishing you all the best.

Also, others on this site suggested that I contact hospice. I did not actually get to do that before my mom passed away, but it is my understanding that they can be very helpful in just initial conversations. They can give you good suggestions and share a lot of information with you.

Again, all the best to you. I hope this was a little bit helpful...
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"all we can do is to be good kids and family members. Bring him things that will make him happy in the moment. Hug him, tell him you love him and try to help him find joy. I know that seems hugely difficult but I'm happy that I tried everything that my husband and I could think of in the last few years... Wishing you all the best."

This is well said. My father wasn't hungry in the last 3 weeks, if he said he wanted pizza, I brought it. He would take one bite and that was it, it's ok he just needed a taste. I scanned photos and put them on a DVD and we watched them and he shared them with others. We warmed blankets to put on him because he was cold.
We had the help of a pallitave care team (or Hospice) in the last week. They helped with the symptoms as he continued on his journey. They also counsel and comfort the family.
Sending hugs to you!
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I'm a caretaker, but I'm also a person with Parkinson's Disease. PD is a chronic disease with no cure---yet.Unless a cure is discovered, I expect to be where your dad is sometime in the future. The most important thing right now is to find out what your dad wants (aggressive intervention vs comfort care).Pain may be related to his muscles cramping or contracting. Is it time for a hospice evaluation? They are wonderful with making the patient comfortable. If not hospice, I suggest very gentle passive range of motion and evaluation of his medication for side effects. He's blessed to have such a caring family.
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Make sure there is not something else wrong. My husband refused to eat (said there was concrete all over his food) and it turned out he had a gall bladder infection -his dementia apparently did not keep him from knowing something was wrong but did not help him express it. After his hospitalization he went to a foster home, where he ate part of the time and part of the time would not. Mostly he seemed to be sleeping and dreaming. He definitely lost weight. When his cheekbones became very prominent, the woman who ran the home said the end was near. She was right. He stopped eating altogether and died less than two days later. I think they know the end is near and start preparing their bodies to go, in a way. When it seemed clear he was failing, I sang to him and held his hand and stroked his head and told him he could go. You're right, we do whatever we can to make them comfortable and happy, but then we have to let them go. My thoughts are with you.
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I have been caring for Mom for almost 5 years now. She also has PD and severe dementia. She is incontinent both ways and has not been able to do much for herself for the last year.
It sounds like your dad is beyond taking commands or doing anything for himself. If you are bringing him home, he will need total care and hospice may be a good idea. At a certain point the disease takes over completely and the body no longer responds to nourishment etc.
I suggest you speak to his doctors and see what they have to say. If this is the case and you want to bring him home, contact hospice and have them do an assessment before you bring him home. Good luck!
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My dad passed away 6 months ago. Towards the end he lost his appetite, and groaned when being moved from his bed. My dad was declining rapidly, If I knew then what I know now, I would have insisted that he be left in bed. Respect his wishes and tell him you love him often. I agree with momsie that it may be time for hospice care. My thoughts are with you.
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My husband is now in end stage Lewy Body Dementia (which is like Parkinson's with Dementia, but in which the dementia comes first and is more prominent.) He is on hospice care, in our home. He sleeps most of the time, and often has his eyes closed when he is awake. He is eating OK some days but most days eats little. He is drinking less now. I offer food and drink but don't push it. He has want he wants. His body is shutting down. He knows better than I do what is suitable.

I strongly urge you to bring in Hospice, whether you bring him home or he stays in the nursing home. They can help you understand the dying process and what he is going through.
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For the past several months, my dad wouldn't eat a lot of food or drink any fluids. The doctor basically questioned why we wanted to keep him alive. It was a horrible doctor's visit, and I left feeling worse than when I arrived. We decided to call Hospice, but my dad was aware enough to let us know (after 1 week) that he didn't want Hospice because they were too negative and gloomy. Maybe it was just the agency that we dealt with, but I didn't like their attitude at all and when we discontinued service, the woman got into an argument with my sister!

We decided to increase his protein (since it's very low 2.5 & he has ESRD & Vascular Dementia) and I bought 'Unjury Unflavored Protein' which you can put in practically anything and there is no after taste. His appetite improved and he's drinking more fluids. It's a slow process and I'm not in denial about how serious his medical conditions are, but as someone already mentioned we just have to be good kids and take care of our parents. If he wants to drink protein shakes 2 out of 3 meals a day, so be it! :) With in reason (and as long as the doctor is okay with it), let them eat what they want.
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I agree with msdaizy. Hospice is a blessing. Our experience has not been gloomy, in fact quite the opposite. They have been attentive to my father's needs and yet are very sensitive to our needs. My mother has developed dementia over the course of my father's illness. At first we blamed it on depression, but we finally got where we could not deny what was happening anymore. Hospice is respectful of both of my parent's needs and wants while recognizing both of their limitations. As for your father's appetite, suggest things he might want. I make Ensure smoothies with ice cream, oranfe juice, bananas, strawberries, peaches, etc. I also make Ensure milkshakes with chocolate ice cream & syrup. He loves sweets now so I do whatever I can to get him to eat things he wants. I mix his meds with pudding (he chews meds now so they have to be crushed). I give him deserts. Whatever he wants, he gets. The last thing my grandmother ate was a fresh peach. It warms me everytime I remember her asking me for my peach. Please take care of yourself. Good luck.
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