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

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...

"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!

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.

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.

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!

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.

Our mom doesn't like to eat a lot...just little snacks all day long. I bought those divided plates that children eat out of, and the smaller portions seem less overwhelming...she also will eat Ice Cream with Ensure poured over it....we switched her to Frozen Yogurt with her Ensure, and she will eat this several times a day, when she doesn't want to eat anything else. Her Doctor and Social Worker say their tastes change so much as they age, and that sweet and salty are what they want to eat the most.

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.

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.

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.

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.

First let me say I can sympathize with you because I have a husband with PD for the past 10 yrs. Although he is probably in the late 3rd stage he has progressed very slowly through the disease. However, I just lost my uncle to the same, PD, and what you are describing to me sounds just like him. After a few stays in the hospital and rehab, the last time he came home hospice was set up for him. They were very helpful and took real good care of my uncle, and also were able to get the necessary equipment, meds, etc that were needed Having them there also helped prepare his family for the things to come. I do hope this helps you and I will keep your family in my prayers.

My experience with my mom and with my former mother-in-law's deaths is that loss of appetite is the body's way of shutting down. Hospice care is wonderful-- IF you can get them to accept it. I know my mom felt it was like giving up. She would not accept it until less than a week before her death, and I know it would've saved her a lot of pain (she had arthritis and spinal problems.) But her mind remained clear, and my sisters and I felt she should be allowed to make her own health care decisions. My husband has PD and is "sundowning." But usually he's fine during the day. So, again, autonomy is important as long as possible, I think. When it's no longer possible, then you have to make the tough decisions.

My father has parkinson a bad heart and kidney failure he is in stage 5 of parkinson, my question is why is it that sometimes he go unconscious for 15 to 20 minutes he says he can hear us but just can't respond. He refuses to go to the hospital this seem to happen in AM after breakfast when he has had something sweet like jelly or syrup, but not all the time. His mind was so good until a few weeks ago now he don't remember my mom after 64 years of marriage sometimes

Brooklyn12 it is very hard to deal with new symptoms without being able to get medical support. Was Dad seeing a doctor regularly up until recently? Perhaps you could discuss his situation with that doctor. The going "unconscious " without being able to respond sounds like cataplexy. I am NOT trying to diagnose your father! But looking cataplexy up may be useful to you. Try narcolepsy also. My husband had LBD (Parkinson's with dementia) and had frequent falls his doctors attributed to possible cataplexy/narcolepsy. This is how I learned about it.

Brooklyn12, I meant to ask if Dad is on hospice. If he is eligible, that might be a great help to all of you. It could be a comfort to Mom.

His doctor wants him to go in hospital for test to see why this is happening,but he refuse saying he wants to be left alone and die naturally. He is not on hospice.

My Dad is in the first stage of Parkinsons and almost to the second stage. I spoke to him today and he stated he woke up this am and fell back into the bed and decided to go to his MD. The MD looked over his med's and then told him it was the Parkinsons gradually going forward. What do I need to expect next? He seems so depressed, I'll call and ask what he is doing and I get the same answer each day "sitting here watching TV", is this normal? I guess God will let me know what to do when the time is right. If anyone has anything to add or help in any way, it would be great!!!!. Thanks for listening.

alinknox, my dad is in the last stage of PD, and went to a rehab facility today for the first time. He's had hallucinations for years, but dementia set in less than a month ago. Echoing others, my family will do everything we can right up to the end to make his life as enjoyable and comfortable as we can. My dad's doctors started treating him for depression right around the second stage - if this isn't happening for your father, please suggest he talk to his doctor. Treatment does help! I got my father an iPad because he was isolating and no longer making an effort to get on his computer. He used this for years, and it really improved his mood. He lost dexterity in his fingers, but he could still open apps with a simple tap. I put the iPad in a Gripcase (shock absorbent case) to make it easier to hold and to protect if dropped. It sounds like you're not near your dad, so I encourage you to call often, even just to "check in" for a few minutes. Support and social interaction is so important. For a while in the second stage, my dad lost his voice - we thought he'd never get it back. Often he would speak in a whisper (difficult for my almost-deaf mom!). My mother would ask him a question, and it would take a long time for him to answer (he was struggling to find the words). Be patient! They used "one finger for yes, two for no." He began to hallucinate. As time passed, we noticed a lot more shaking, and a loss of appetite. He would literally collapse in bed from exhaustion and sleep for hours, and started falling - a lot. I visited in June and he could still walk with assistance. In less than a month, he now has dementia, incontinence and is bedridden. Any illness with a bitter end is difficult to discuss, but I'm glad you're seeking help for yourself and your dad. If you have faith in anything, I suggest you adjust your grip, hold tight, and cherish the time you have with those you cherish.

Does involuntary eye closing during activities such as eating/chewing, dressing signal advanced stage of PD, even though the PD (with dementia) individual is ambulatory, eating well?

Dad falls so much that no one will take him in a nursing home, yet I keep reading that people have their end-stage parkinsons family members in skilled nursing. How do you do that? Also, how do you know when to call Hospice?

Vheller,
Since this is an older thread, I'm not sure if many posters will see it and respond to your question. Maybe you could start your own thread with this question.

I don't know much about Parkinson's. Maybe those who do will respond to your question. It was my understanding that if your dad cannot function at home, he would qualify for some type of facility such as a nursing home. Have you discussed this with his doctor?

My mum has Parkinson's and it was believed she also had LBD, latterly they are unsure of the LBD and it may be that she is also bi-polar. In any case she lives at home with me and her Parkinson's is at end stage. She cannot walk or do anything for herself apart from hold a special cup to drink. She has Dysphagia so the cup has to be one with a graduated amount released per sip 5 or 10 ml. She coughs after all drinks even though they are thickened. Food now is refused, firstly because she said she wasn't hungry and it tasted bland. Her taste has changed so I increased salt and sugar and included strong flavours like curry - which seemed to work for a while. But the coughing got worse with chest infections and now she is hardly eating at all. She is still drinking though. She is refusing all fortified drinks from dietitian or little pots of fortified desserts and won't have any of the protein additive either. She has a DNR and has refused tube feeding or intervention. She is classed as having capacity, although she hallucinates has periods of psychosis and is very angry on occasions thinking people (we) are stealing from her and don't care about her. I believe she is preparing herself for death. I offer soups and soft food but after a tiny taste it is refused. I am past being worried and upset by it now as she knows best how she feels. Being trapped inside this broken shell of a body is like a prison to her. We have done and do all we can, but her condition is now so bad we can't even take her out. So with hospice alerted and the meds pack here at home ready for end of life , carers four times a day and the immeasurable support of Marie Curie nurses twice a week overnight, we can do nothing else. Parkinson's will take its own path for as long at it deems - we are just gentle bystanders and that is so difficult in every aspect.

does anyone have an answer for the drooling with parkinson's and dementia? My hubby has PD with the dementia and drools constantly. The Drs. just tell us this is part of it. I can't believe something can't be done. He gets so embarrassed and just wants to stay home all the time.

hanginnthere, it really is just part of the disease. Hang in there!

My mother is in a nursing home. She drools a lot. I suggested to the director of nursing that we try something. She asked if it seemed to bother my mother. Actually, it doesn't. If she is aware of it she wipes it with a tissue. It "normal" in a nursing home environment. The NH hates to do treatments for "cosmetic" reasons -- just so the family will be more comfortable.

My husband spent his 10 years with Lewy Body Dementia (like Parkinson's) at home. He drooled a lot. It was especially bothersome to him in his final weeks. He kept a big plastic bowl lined with a plastic bag in his bed as his spitoon. The hospice nurse thought he'd be more comfortable (not just look better) if we could decrease the secretions. She brought in motion-sickness patches as travelers use, to put behind his ear. She warned that I should discontinue them if he developed an overly dry mouth. He was good with them the few weeks before he died ... and they did really help!

hanginnthere, I'd ask his doctors if it would be OK to try this when he goes out. The value of him going out to lunch with you or interacting with others may outweigh any concerns they have about the patch's side-effects. I would ask them or perhaps the pharmacist, though, to be sure there are no other drugs he is taking that it could interfere with.

This is a farily common question in PD and LBD. Could you please let us know if you try this? We learn from each other!

When should my mother-in-law consider Hospice?

I'm new here, and my dad is 80 and is in a nursing home. My 78 year old mom and I go see him everyday.... He has PD/dementia, he recently got pneumonia and the flu.... so he had to go the hospital... he was released today to go back to the nursing home.... He doesn't want to eat anymore or drink... My mother is always trying to make him eat and drink... It's getting really hard now. He fights it and just has his eyes closed... someone suggested hospice...I've read many other situations and I feel and respect all of you. Taking care of him and my mom is really hard...I'll keep reading on here...:)

Hi LostKitty and everyone who has posted in this thread. I feel for everyone one of you. My Dad is 77 and was diagnosed with Parkinson's at the age of 62 (tremor in right hand). The last 5 years PD really started to kick in, he started walking slower and shuffling his feet when he walked, would freeze up, get nervous, stop and would fall. A lot of falling, a lot of trips to the emergency room. His speech started to get very soft and he couldn't project his voice and his facial expressions like smiling he is unable to do now. The last 1 1/2 years, he needed my mother to help him in and out of chairs, while walking behind him or in front of him holding his hands and taking steps slowly with him. The last 6 months, he could barely walk and refused to use a cane, walker or wheel chair, and wanted my mom to carry him everywhere around the house (he is 240 lbs, 6 ft 2, she is 5 ft 3 and was 140 lbs., now 95 lbs, she lost 40 lbs from carrying him and picking him off the floor). My mom is his 24/7 care giver. Medicare won't cover in-home care or a facility. And, my parents don’t fall under Medicaid because they don’t meet the poverty level guidelines (as their only asset is their house which my Mom doesn’t want to lose). My mother age 73 was always healthy and quite active physically, but now has become depressed, weak, and fragile because of taking care of my dad. The last 3 months, my Dad can no longer walk, is in a wheel chair, drools, naps a lot, and has his eyes closed a lot while talking or sitting there (I am not sure what the eyes closed is?) He started having hallucinations for 1 month now. The only thing my Dad can do for himself is eat. He does not need help with feeding himself, although after a meal, a lot of it is on his chest, in his lap, and around the entire chair. My Mom dresses my dad, shaves him, bathes him and helps him with the toilet. Since I work a full-time job and supporting my youngest child, I can’t afford to quit my job and assist my mom. I feel useless. I got my mom a cleaning lady to come to her house every other week, so my mom no longer has to clean the house. I don’t know what else to do. She gets out of the house 1 hour a week (my brother, also 6 ft 2, sits with my Dad) so my mom can go grocery shopping. That’s it. She is confined to the inside of the house.
I want to get my Dad a professional care giver assistance (and to alleviate the stress on my Mom), but we have no means to do this. A friend of our family mentioned Hospice? She said hospice would be covered for in-home care, but need his doctor to signoff on this? How do I even bring up the word Hospice to my mother without her or my Dad getting upset? I do believe my Dad is in Stage 5 of Parkinson’s. Any words of wisdom would really help?

I've often read advice to enrol someone in Hospice in order to get extra help, but while there is assistance that comes along with Hospice it's primary purpose is about stopping curative treatments and focusing on comfort care in the final months of life. I've seen too many posts where people didn't seem to understand that and later regretted their decision to hire a Hospice provider, even though their loved one qualified. Have you, your mom and dad agreed that you have reached that point?

Hi Cwillie, and thank you for the reply. I do believe my mom has reached that point. Her health is declining (not only the weight loss, but she injured both shoulders, time and time again pulling my Dad up off the floor). I do believe my Dad is in the final stage of Parkinsons, although he has not lost his appetite. They have a hospital bed in his room and an escalator chair that takes my Dad down to the lower level of house so my Mom can get him to the car and then to his doctor visits (my Dad also has prostate cancer and skin cancer). They had wall bars installed all over the house including the bedroom and bathroom months ago, but it doesn't help at this point as he is permanently in a wheel chair. I just don't know what to do to help their situation.