What are the end stage symptoms of Parkinson's?

20 answers | Last updated: Feb 24, 2017
A fellow caregiver asked...

What are the end stage symptoms of Parkinson's disease? What should we expect near the end? What is normal and what is not? My mom is 81 and has was diagnosed with Parksinon's disease 8 years ago. It has progressed quickly. She is on medications every 3 hours and has a feeding tube for her medicines since, at one point in her disease, she wasn't able to swallow without getting choked.

Expert Answers

Graham A. Glass, MD, is the deputy director of the San Francisco Parkinson's Disease Research, Education, and Clinical Care Center (PADRECC) and an assistant clinical professor of neurology at the University of California, San Francisco (UCSF). He completed a fellowship in movement disorders at the Mayo Clinic.

Parkinson's disease affects the whole nervous system and over time patients such as your mom develop a number of symptoms that are not often thought about. Although we often focus on tremor and movement problems, other "non-motor" symptoms can affect her quality of life more severely. No two patients with Parkinson's disease are the same and some patients are affected by some symptoms and other patients are affected by others. When a patient has had Parkinson's disease for many years problems that tend to affect them include swallowing and speech, problems with drooling, balance problems, constipation, and bladder problems which may include incontinence. Memory can often be affected as well and sometimes patients can develop confusion and hallucinations which may actually be worsened by some Parkinson's medicines. It is important to work with a doctor that has significant experience with Parkinson's disease if possible, as these problems can be complicated to treat. The National Parkinson Foundation has a number of educational materials that you may find helpful in further understanding all of the symptoms that can be associated with Parkinson's disease at the advanced stages National Parkinson Foundation

Community Answers

Pnschmidt answered...

Following up on Dr. Glass's comment, check out the National Parkinson Foundation's "Managing Advanced Parkinson's Disease," available as a PDF or free book here: http://bit.ly/cDxMmd

Ladydawn answered...

You did not indicate if your mother was still at home or in another facility. There may be services available through a nursing care or even assisted living facility which require travel when living at home.

The end stages of Parkinson's disease are neither pretty nor dignified. But there are some therapies you can do obtain for her to help ease your mother's pain/discomfort and possibly bring some symptomatic relief...(Symptomatic relief sometimes means less medication)

About the end stages themselves, you can read about through the various rating scales. As has been mentioned, patients manifest different symptoms and different rates of progression; however, there are some commonalities.

In the article below, you will find the 2 most common rating scales and links to the UPDRS and the revised version. http://parkinsonsfocustoday.blogspot.com/2009/03/questions-about-parkinsons-disease-part_3744.html

Has your mother gone to or been seen by a speech therapist who specializes in PD and/or stroke? It is still possible that there would be benefit her for her speaking, swallowing and breathing. Her neurologist should make a referral to a specialist. If that is not possible, please see the link below to an article about vocal exercises which can be done at home. There are a few articles at the site about breathing exercises and also voice exercises: http://parkinsonsfocustoday.blogspot.com/2009/05/voice-exercises-will-help-parkinsons.html

I would also suggest that for an improvement in quality of life - for feeling better, you inquire after medical massage. Because different states have different qualification for either licensing (as is done in my home state of Ohio) or certification, please distinguish between medical massage and spa massage. They are not the same and if not done by a professional can even be harmful to your mother. A medical massage therapist will work with your mom's doctor if requested. Don't forget there is a decided endorphin benefit from regular massage. http://parkinsonsfocustoday.blogspot.com/2009/07/massage-therapy-adjusting-to-parkinsons.html

Take a close look at your mother's entire treatment and therapy regimen. Review it with her doctors. Since she has a feeding tube, I assume that she is on IVs, patches, possibly liquid forms but I could be wrong. Look at what kinds of exercise she can do now? What are her other options. Push to think outside the box.

Without taking a bite out of her rapid progression, it may continue at this rate.

If you are her caregiver, please get back up. Sometimes it is easier for someone else to have insight into what will help even if it is just brushing her hair or doing her nails.

One afterthought. Make sure that she can breathe easily through her nose. Sometimes there are sinus issues which can also impede swallowing and cause choking.

Best Wishes

A fellow caregiver answered...

My mom has Parkinson but early stage, but the big problem is that she is always shouting without any reason. She disturbs every person and we are receiving many complaints. She is in a caring house and even the doctors do not understand why she is shouting. When we ask her why she is shouting she answers I am not shouting. She is in medication , the doctor is giving her tranquilizers but still he doesn't understand what is the problem. Is she hallucinating ?

Ladydawn answered...

To anonymous whose mother is shouting: You do not describe when your mother is shouting and what she shouts. Listening to what she is actually saying might lend some insight into the problem. If she is shouting in conversation, perhaps she has a hearing loss. If randomly yelling, perhaps she is having illusions, hallucinations, or vivid dreams. These can be caused by the Parkinson's, as side effects of her medications or because she is developing dementia. MAOIs and even Sinemet can promote hallucinating because of the chemical changes to the brain - as can other medications, alone or in combination. You would do well to listen to what she is shouting to help determine at least part of the problem.
Her medications could be adjusted.
Sometimes it is possible to help a person to realize that she is in an altered state so that she can be part of the solution. Perhaps she has not adjusted to her new surroundings and her brain is just trying to make sense of them. There may be keys to help her recognize that she is hallucinating. Keep in mind that to her these seem real so that simply telling her they are not is not going to be enough.
Accusations don't help and obviously the tranquillizers aren't making a difference. Are there certain times of day when she yells or is it consistent throughout the day?
There may be no complete solution but just putting her on tranquillizers may not help much if she is hallucinating because of her medications.

Taweel answered...

Thank you for your quick reply.

My mom shouts randomly any time during day or night without any explanation or reason. Sometimes she shouts the name of her husband and she wants him to come and visit her. But the main problem is that she is not aware that she is shouting and when the doctor is talking to her inquiring if she has any specific reason to feel anxious or if she has any problem to discuss with him, she only replies that everything is OK with her.

The doctor is in perplexity and he doesn't want to put her on sleeping pills to keep her quiet. She used to share the room with another person in the caring service but unfortunately that person cannot stand her anymore because she was deprived from sleeping and is annoyed by her screaming. We tried to explain to mother what is happening and now that she is alone in the room (without telling her that we have to pay extra charges) because she is disturbing her roommate, she said it is OK for her to try to be alone.

The problem that even when she was at home she was shouting during the day but especially during the night that my father was unable to sleep and this is the main reason why we moved her to a caring place.

Your help and support is much appreciated.

Ladydawn answered...

Response to question about mother shouting.

It sounds as if your mother is shouting not only in her sleep but also when she appears to be awake. Are you and the doctors sure that she is not aware of the waking shouting? Could she be trying to conceal her knowledge by denial in an effort to protect her image as an ill but normal person?

Does she drink a lot of caffeine or eat too soon before resting or sleep periods?

Because she is apparently in denial, it makes for a difficult discussion.
How often is your father able to visit her? Is she a social person by nature? Has the content of her shouting changed since going to the nursing home? Is the yelling constant or is it intermittent? Aside from yelling for her husband to visit her, what else is she shouting about?

Just because she says she is not suffering from anxiety, doesn't mean that she isn't. What does she do during the day? Are there sufficient activities available to her? What did she do when at home with your father?

Dau answered...

My father was also having problems with this and we found that Hospice is very good at reevaluating medications and will be allowed to help care even while in a nursing facility. This was very helpful for our family and having an extra professional nurse from Hospice come into check on him and additional showers and support for the family added care that was much needed during this stressful time. Not only did we feel he benefitted from the extra care but it added to more attention by the staff there while he stayed in a nursing facility. It was covered by medicare.

About you answered...

A factor to health problems and at end stages of one's life has an effect deeply within the family who may be trying every effort and remedy to comfort, releive and modify all elgible support and care. There are many faces to Parkinson's Disease. You did not mention if you or a Care Facility was giving care to your mother. It appears that good care is being provided even with the disease progressing quickly. Medication is being given with measured care of the progression of the disease and adequate nutrients for nutrition for her body is being given along with proper hydration. The end stages of Parkinson's Disease has listing of the different symptoms one may face through this difficult time. Since there are many facets to this disease, I would like for you to talk closer to your attending doctor for your mother on his professional insight of her progression of your mother's Parkinson's Disease. With deepest regards to your question, I hope you will get the answers that can satisfy your concern and love for your mother.

Sad2see answered...

My mom says my grandpa is going to starve himself soon he has this disease and he wants to give up he can barely eat or drink now what can we do to help him in his last days I feel so helpless I love my grandpa he has been like a dad to me

Momsie answered...

I'm going to be 75 years old soon. I've had the symptoms of Parkinson's disease for 15 years and was formally diagnosed seven years ago. So far I'm able to take care of my big house, babysit my grandchildren, write my memoirs, teach classes at my church, garden, exercise, dance. the saddest thing to me is that I'm no longer attractive my husband. That was a huge loss. But life goes on and I find movement especially vigorous exercise more helpful than medication when the symptoms get bad. My plan is to hang on here as long as I can, squeeze as much enjoyment out of every day I possibly can. When I can no longer function in my life no longer has meaning, I plan to do the same thing as the grandpa mentioned above. I plan to stop he eating. I don't feel sad about it. I think my family will be concerned and upset so I have to try to explain it to them. I'm sure that I would be sad and upset if I was in my sweet fanilys' position. In my position the fact that I can take control of my own destiny gives me a peaceful feeling..let your grandpa know how much you love him. Tell him you'll miss him and try to understand.

Julianneo answered...

My beautiful mom struggled with Parksinsons for 10 yrs and later diagnosed with Lew Body Dementia. I was her caretaker. She lost her struggle at age 80 and struggled greatly at her death. She suffered towards the end with severe anxiety,confusion,hallucinations,shuffled,fear,. I crushed all her meds and gave them in her applesauce. In the end there was no helping her except for being there and holding her hand. She had a living will she made when she was still well. No feeding tubes etc. Basically it became very very dfificult to swallow and so she stopped eating and drinking. From that point on it took 10 days. She remained conscious but would just stare ,no longer could speak. I had hospice to my home and used their care pack which included under the tongue morphine with Md order. I am a nurse and she died on my sofa with her children and her 1 granddaughter holding her hands. It wasnt pretty,the hardest thing I have ever done. She died on July 21st at 10:05 am. Mom wanted to be at home,she would have lasted longer with a feeding tube but there was no quality of life.

Tschueggu answered...

@ Julianneo, my mom is 88 and she was diagnosed with Parkinson's almost 20 years ago. she has caregivers and hospice and a living will in place, and she is at home where she wants to be. But this is the cruelest time of all now, because the sinemet doesn't seem to be helping and she doesn't want to take it (we graduated to crushing it in applesauce too). Her body spasms like it never used to before and freezes at odd times. She mostly just lays in bed, sleeping or conscious, but she can't really speak anymore. If only I know what to do to help stop the spasming and freezing. Her doctor recommended dissolving the meds in water but she doesn't want to drink either. What does the tongue morphine do to help? I just want her to be able to go peacefully and I am at a loss of what to do. Maybe you just have to stick it out.

A fellow caregiver answered...

I sit with a friend who is 83 years old. She had Parkinsons and has had it for many years. I think that there are times that she truly does not know what it going on and other times I can see in her eyes that she does. Today she didn't talk and kept looking around. Her pupils were really small and her eyes were kind of glassy. Sometimes she would shake her head if ask a question and other times look at me like she wasn't there. To me, I think that you just have to tolerate whatever comes along, because they didn't ask for this and they cannot help it. My friend has become paranoid and thinks that people steal things from her. She also wants the door locked so no one can get in and get her. She has mentioned that she is frightened. I love her like an older sister and hate it that she is going through this, but whatever she does, I will sit with her and talk to her. Sing to her or just let her rest. Maybe some music would be good for the mom that is yelling.

Googie answered...

My dad is in a care home with my mother he has had Parkinson's for the last 5 years he now sleeps most of the time eats very little and sometimes not sure if he knows I'm there poor mum just sits there looking at him she has dementia but just wants to be with him I often think that his time is coming to the end. They have been in the home nearly 6 months now and I have noticed a deterioration in him in that time. He no longer has any quality of life he has to be hoisted to be moved around so undignified for my poor old dad.

A fellow caregiver answered...

My mom is on life support right now she has Parkinson's aspiration nammonia and bipolar I didn't know she was diagnosed with Parkinson's when she was 40 I was a child then and now it would seem I'm losing her I hope we find a cure for this horrible disease so that no one else should suffer and I hope I can be the voice for my mom (Theresa)thank you from her daughter Loretta

Adrocha answered...

My dad s 81 and has had parkinsos for 20 years. I have been his caregiver in my home for over 4 years when his fallig became an issue. I did pt and ot and speech therapy throughout but last month after a fall and 2 week stay in a rehab nursing home where they dehydrated him 8 times he returned home. He has not been the same and I have full hospice now. This disease is the most devastating I have ever seen. My dad is so unhappy hospice has been amazing

A fellow caregiver answered...

I am my wife's care-giver. She has had Parkinson's for about 25 years now getting it right about age 40. She has had a deep stimulator implant about 12 years ago and would highly recommend. We would go walking downtown Chicago for about three or four miles while stopping at the good watering holes. Couldn't do that before the implants and can't do that anymore either. Most of her symptoms were shaking though. Now, she is being hit pretty hard with dementia and is on the Excelon patches. They seem to be helping a little. She also has a bad knee that keeps her from doing regular excersize and I know that is counter to keeping ahead of this disease. She has had a couple of bouts with pneumonia and the doctors hit her hard with Amoxicillan. So far so good, but its a bad disease.

Ppdinpcola answered...

My uncle is only 53 and was diagnosed with Parkinson's Plus 5 years ago. He recently recieved a feeding tube and has been put on hospice. His wife of 28 years decided she didn't feel like being his caretaker and neglected and abused him. She has convinced his 3 grown children that this is all an act and he is being over dramatic and lazy. My family in Pensacola had to drive down to Orlando and rescue him. He had to leave the big beautiful home that he built and all of the luxuries he worked so hard for 25 years to be able to have and provide his wife and kids with and they neglected him to the point of refusing to assist in any doctor/medical/transportation/personal hygiene needs and also they all refused to help him up when he would fall. Only laughing and belittling. His wife had always seemed and angel to all of our family and their kids were the greatest and most loving children. The Diagnosis of this disease and the progression of its symptoms only brought out the evil inside those he provided for his whole life. He is now staying with his elderly parents, and is being cared for by his sister and brother and nieces and nephews. This disease has stolen his health, his happiness, everything he worked his entire life to have, his wife and kids. And now he is battling through a divorce while on hospice. I guess my question is: with a feeding tube, loss of bowel control, permanent catheter, almost complete loss of speech, increase in drooling, and a loss of 30lbs in 2 months... How long will I still have my uncle? I know there is no definitive answer and that even patients on hospice can last years in some cases, but in the expert opinion of those who do the caring, the day in and day out, round the clock caring, what is your opinion?

A fellow caregiver answered...

My dad has Parkinson's but the doctor said that it is severe and that he has got it in both sides of the brain do any know what stage he is at