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

No one wants to be left in a nursing home. So some of your Dad's problems are the fact that he is left alone and apart from his family. The Parkinson's medications make you very sleepy, tired and weak. You are wonderful to care about your Dad. He does not understand what is happening to him and the Drs don't really know either. Unless you have PD you are only guessing. Talk quietly and privately with your Dad. reassure him you will be there for him. Read and learn all you can about PD and the meds. If he is on myrapex or other dopamine agonists, you may want to talk to your Dr. about Stalevo and better meds with a lot less side affects. Halluccinations and nightmares are very real on myrapex. Sometimes it takes months to find the right combination of drugs for to benefit from. THis can be discouraging, but know it is very common. Have hospice come in, they are a great help. I am close to calling them as I am in 5th stage of PD. I am all alone as my children through me away like garbage when I became broken from PD. They put me in a homeless shelter, just dropped me off, left me at the emergency room at hospital, told me I embaressed them with my dyskensias. So I know the loneliness side of a Disease. Love your Dad.

I just want to say how wonderful to have a child that cares, and stays to help. My children ran off when b they found out I was broken. Have not heard or contact since they left me at the homeless shelter , 3 years ago.

Perhaps you could ask for hospice to come to your home. I have summoned them for 5 of my family members that were dying. They come to your house, so your Dad can be at home, they will make him comfortable and take care of everything. I am getting close to calling for them as I am 5th stage of PD

I'm so sorry, Katie.

I agree with Pam. You do have to wonder what that doctor would have to say for himself. Did he actually go and examine your father?

How is your mother doing? I hope you're able to comfort each other. My condolences to you and your family.

Oh KatieCT, Your story and update is so sad and upsetting. I am so sorry for what you, your mom and your family went through. I don't understand your doctor not approving hospice? I pray for your mom to find peace, rest and to gain weight and health. You all still have a future, please take care of your selves. God bless

I wanted to add, that I am a bit upset that my father could not get the home-care assistance or hospice in his last days.

Hi Everyone, This is KatieCT. I posted 5 months ago (March 2017 post above) about my 77 year old father with Parkinson's Disease and how my mother’s health (and weight) was going down hill trying to take care of him from picking him off the floor, bathing, dressing, etc. I spoke in my previous post how we were unable to get him in-home care because we could not afford it and could not get it covered by Medicare/Medicaid in Connecticut. Also, we could not get him into Hospice because the doctor would not authorize as he felt my Dad was not at end stages of PD (If he had authorized it, it would have been covered by Medicare/Medicaid since it was Hospice). My parents don’t have available funds, only asset they have is their house and their social security checks (which checks are slightly over the poverty level requirement to get Medicaid in Connecticut).

Well, my Dad went into the Hospital the first week of May 2017, after a fall in the bathroom which required the fire dept. to come and remove the bathroom door to get at him because he fell against the closed door, and ambulance to bring him to the hospital. When he arrived at the hospital, he started having issues with his core body temperature dropping dangerously and had to be put into a heat suit for 2 days on and off, his toes on both feet which were, purple and infected, due to no circulation from not walking. They amputated 3 toes on each foot. While he was in the hospital, he began to have issues with his kidneys, to find out the catheter backed up and his urine was not being properly expelled (not sure how this would happen with medical staff around?). He started becoming less coherent and seeing things that are not there while in the hospital (like he was catching things in the air), and became combative with the nurses/occupational therapist, so then they put him on Adivan sedative which made him non-responsive with his eyes closed all the time and not reacting to our visits at the hospital, he just laid there.

So they moved him in June 2017, into a Rehab Nursing Home in preparation to eventually bring him home again. He was still on sedatives and not really recognizing any of our family during our visits. At the Nursing Home, he now was not eating and they did a procedure to put a feeding tube directly into his stomach. He pulled out the feeding tubes 2 times while at the Nursing home, having to be rushed back to the Hospital for re-insertion. Still, the doctor would not authorize Hospice. My Dad’s time ran out for his hospital/nursing home per insurance and they were getting ready to release him the week of July 24, 2017. So, my mom met with the case worker during that week to find out about in-home care and my Mom was getting ready to do a “reverse mortgage” on their house to pay the $15,000 a month cost the care worker said it would be to have someone take care of my Dad at home.

My Dad passed away on July 29, 2017. We were all in the hall outside his room at the nursing home, waiting for the nurses to get him dressed and fresh sheets so we could visit him; we never got to say goodbye.

My husband has had PD for 26 years and it has just been steady downward decline. He has been in a nursing home now for 2 years after I was just unable to take care of him
anymore. I really feel for your mother and something indeed has to be done for her. This is not a good situation. Medicaid allows spouse to keep house and one car. I don't understand why your dad couldn't apply for Medicaid. She would not lose her home. I am struggling now and sometimes wonder how much longer I can handle this. Bless you all and good luck.

My husband has end stage Parkinson's and is on a chronic kidney disease diet to keep his kidneys working well enough to get by. We have thought a lot about death and dying. There is a wonderful book out called Hard Choices for Loving People by Hank Dunn. It can help you navigate each decision you make...mostly we can ask ourselves, "Will the benefit outweigh the burden?" If one is in their last stage of life, why try to prolong it with procedures that cause infections. I would just offer water/and pureed/thickened food and let the PD patient decide whether they want to drink or eat. Why make they uncomfortable? One can ask themselves, "Why am I trying to keep my loved one alive? For their benefit or my own?" We have brought hospice in to our home to help guide us in the ways to keep my husband as comfortable as is possible. They have all be wonderful. I would recommend this group down here in Andrews, NC to anyone. Here is a video by Hank Dunn that may help you. https://www.youtube.com/watch?v=knuGYDXngTA

My husband has suffered with Parkinson's for 30yrs. Over the past 10yrs, Lewy Body's dementia reared it's ugly head and has taken so much of him from us. He is now in a nursing home with 24/7 care and a one-to-one, which gives me a little piece of mind.

I can relate so much to the initial comment at beginning of this thread and much of what others are experiencing.

I dread going to the nursing home, yet simultaneously cannot wait to see him.

It is a running battle to see that all my husband's needs are met. Dehydration particularly has seen him hospitalised on two occasions. Sheer ignorance I believe when carers take "No" for an answer instead of gently prompting fluids.

I see my husband every day for 2 or 3 hours, apart from Sunday.

Neurologist has said my husband is one of a very small pocket of people who have coped thus long with such a debilitating ugly disease.

I am about to get ready to go visit him. But will join in discussion later.... if someone kindly keeps thread going. It's so very important to feel that you are not alone in your grief, sorrow and feelings of helplessness. Love... that will get you through the next hour, day and week. xx

KatieCT, I does sound as though your mother needs support and she needs to make her own health a priority. From what I have read you can ask his doctor to refer him to Hospice, or you can research agencies in your area and contact them directly and they can see if he meets their eligibility requirements. It never hurts to get the process started, there are many more people who have lamented they didn't bring hospice in soon enough. Sorry you've reached this point with your dad.

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.

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 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'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...:)

When should my mother-in-law consider Hospice?

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!

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.

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.

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?

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?

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?

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.

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.

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.

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.

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.

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

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.

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.