End Stages of Parkinson’s Disease

In most newly diagnosed Parkinson’s patients, the anxiety revolves around the effect that the disease will have on daily functioning. However it should be noted that most Parkinson’s patients can quite comfortably manage with daily activities although there may be some level of difficulty. The symptoms in the initial stages of Parkinson’s disease may be mild, but in the last two stages of the disease or the “end stages”, the symptoms become such that the person becomes totally unable to function without help.

Stage 4 of Parkinson’s Disease

In this stage, the main difficulty is in maintaining balance and posture, so patients need assistance while standing and walking. Increase in tremor, rigidity (increased tone) and bradykinesia (slowness of movement) as the disease progresses make the performance of routine tasks difficult without help. Falls tend to occur more often. The patient is mobile at this stage but needs help to carry on with their daily tasks.

Stage 5 of Parkinson’s Disease

At this stage of the disease, the patient is unable to stand or walk and constant nursing care is needed as they cannot function independently. A number of patients also suffer from dementia, depression or hallucinations, which further aggravates the situation.

Features of the End Stages of Parkinson’s

The end stages of Parkinson’s disease can be extremely difficult and heart-breaking, both for the patient and his close relatives and friends.

  • There is progressive worsening of symptoms despite of drug therapy.
  • Tremor increases gradually, and in the later stages there may be action tremor (like an essential tremor) whereas initially there was tremor only at rest, thus making performance of routine tasks difficult.
  • Unsteadiness in walking or turning, resulting in falls, become more pronounced as the disease progresses and ultimately the patient can only stand or walk with help, while in the end stage he becomes completely bedridden.
  • Dementia and depression occur in a large number of patients of Parkinson’s disease towards the end stages of the disease and anxiety, mood changes and insomnia may be an associated symptom.
  • Dysphagia or difficulty in swallowing often leads to less intake of food and nutrients, causing weight loss, weakness and tiredness.
  • Constipation is often troublesome and may be a side effect of anticholinergic treatment.
  • Recurrent infections occur such as pneumonia.
  • Improper bladder control may lead to urgency and frequency.
  • Hypersalivation or drooling is common due to difficulty in swallowing and may lead to choking.
  • Memory loss – both recent and long term.
  • Confusion and hallucinations become more pronounced in elderly patients being treated with anticholinergics.
  • Pain and discomfort in the lower part of the body and limbs.
  • There is progressive difficulty in speech with slow, soft, monotonous voice and the patient may have problem finding words.
  • There may be dyspnea or difficulty in breathing.

In the end stages, the patient becomes totally helpless and cannot survive without a care-giver. They are unable to sit, talk, walk, turn around in bed, control bladder or bowel movements, or conduct any bodily function on their own. Combined with their gradually declining health status, both physical and mental, the end stage leads to death ultimately. Unfortunately, there are no medicines yet that can cure Parkinson’s disease but  only help to alleviate the symptoms or delay progression of the disease.

24 Comments

  1. My husband was diagnosed approx. 10 years ago with Parkinsons; however, he has never shown the classic “tremor” synptom. He has been on Leva-dopa for years. Approximately 2 1/2 years ago he began having balance problems/falling, urinary incontinence, hallucinations, became quite aggressive and was diagnosed with dementia. As symptoms progressed he was diagnosed as psychotic.
    Five months ago a neurologist refined the dementia to lewy body with ALS symptoms.

    His legs are contracting and he is wearing braces almost constantly. My question: please explain the contractions. When I ask I am told
    “it is simply a progression of the illness”.

    Thank you.

    • My husband has Parkinson’s disease. He is 65, diagnosed 4 years ago, but disease was already attacking his body 10 years before the tremors started to show in his R arm and leg. He is still working and active. He plans to retire April 2018. we find that exercise has been a blessing for him. We know it will not stop the progress of the disease, but it is helping his balance, his core strength, and attitude. Being in the fitness field for almost 50 years, I set up a gym in our basement, and work out with him and also stretch his arms and legs. I also took a course at Rock Steady Boxing and box with him at least 2 to 3 times a week. We talk walks and he shoots baskets at the county recreation park’s basketball court near our home. (He use to play basketball in high school.) My friend is a massage therapist and comes to the home one to two times a month to keep his muscles stretched. She is moving out of state in October so we are now seeking chiropractic care along with acupuncture and continuing massage therapy. He is such a proud man and it is difficult for him to share his fears or anxiety with me. (He has always been one to hold his feelings inside and not express them easily.) I have noticed some of the symptoms mentioned by others on this page – the constipation, balance issues, and noticed he has some bouts of choking – not often, but I am keeping track of how often it is happening. Sometimes he is moody and it is hard for me to put my finger on exactly what he is thinking or feeling. I realize diet has not been mentioned by anyone, but the meals I prepare for him are made with fresh ingredients, not fried, gluten free, and no preservatives. I limit his intake of sugar also, but he does enjoy a glass of wine in the evening or maybe a beer. (He does love chocolate!!) I appreciate reading all of the information provided by other individuals and must admit I am afraid of the future. Being his only caretaker right now, my hopes are that I will be able to be the best caretaker for him. Both of his daughters live out of state as does my daughter. We are considering moving closer to one of his daughters who lives in Florida. He loves to work outside in the yard, but the winters and snow removal are becoming a bit overwhelming for him. The warm weather may be better for him. I pray I will find the strength to keep my husband as mobile and active as possible. I cannot imagine not having him by my side.

  2. My father aged 79 suffering from Parkinsonism for the past 6 months. now totally bedridden due to the difficulty in swallowing.Now maintining in bed with home nurse with the control of my mother. Totally in depression- the whole family.

  3. my aunt is in the last stages of parkinsons. been in last stages at least a year.how long to you think she will live like this.she has had parkinsons 13 yrs.

    • my friend has parkinsons and was diagnosed 10 years ago and is stage 5. she sleeps 23 hours a day…very little nourishment and yet when she does recognize us and is able to respond with a word or two, it is like she is feeling great. she has 24 hour nursing. As far as how long she will live….some days it feels like she may go anytime….and other days she will look at us and say I’m still here. Doctor says could do this many more years.

  4. The lady I have cared for since she was 83 is now 91.90 was the down ward spiral.She can no longer feed her self .Has to be turned every 2 hours .We have 24 hour care .At times she swallows ok .Then others she is so out of it we give her baby food yogurt .Soft foods only.Thicken liquids only .She can be coma tos one day neon the next Dementia and haucinations are also there .No pain thank God but its like watching someone die alittle each day .

  5. Thanks for the very informative post. Parkinson’s disease is terrible and the best one can and should do for their loved one is to give their very best when they have the chance.

  6. My Mother is showing the “End” stages of this mean disease. She is 85 and has had this for 10 years. Thanks to my brothers and sisters, she has company every day. I live in Des Moines IA. It is very hard to think of her living away from my Dad. She has a poor quality of life. My God take her home soon.

  7. I have Parkinson’s. I find simple tasks very difficult now. Many days I long to die. My situation is complicated by lymphedema in my left leg. Mostly I am tired.

  8. my husband is 85 and is at the end stages of Parkinson. He can not do a thing for himself. Could not take care of him and had to put him in a nursing home where is well care for . It is heart braking to see him like this and like you I pray to God. Is there a support group somewhere ?

  9. The end stages are horrific!!! My father had Parkinson’s for 20 years!! He had the Tremors very bad.. He did great up until 3 years ago he became light headed, and had repeated falls!! His memory became worse!! His brain in march 3 years ago looked fair by the end of April he was constantly falling sat in a daze!! He knew he was dying he told me his time was near!! When the scanned his brain in April half his brain was gone!! He fell again in July and never got out of his bed again!! He could not speak good!! But his mi d was clear but his body was shutting down. He lived 3 weeks in pure Hell!! We watched him suffer trying to get air his throat was closing up!! He lost so much weight I am truly thankful for Hospice the are true Angels.. My son and I cared for him 24 hours a day!! I was beside him when he finally passed!! Thank God no o e dresser Es to suffer in such a painful death.. It will be three years this July he passed and the horror of watching him suffer never leaves my mind!! He wanted to die at home, if I should ever get this horrible disease I do not wa t my children to have to watch me suffer till I pass it’s not fair for them!! May you all find peace

    • Thank you….I am going through this horrible time watching my poor grandfather deteriorate before my eyes. I lost my grandmother in Feb. she had all her faculties but her health was poor. I know she tried hanging on hoping he would go first. I was asked to be there POA. & i agreed with honor. I hope the dear lord takes my nono
      soon & peacefully. He has fallen 3 times this month in the nursing home. Once getting 9 staples & now with such a skin tear abrasion. His swallowing is declining & his mind in & out. I sit there with tears in my eyes because I feel hopeless. I am in the diagnostic field and have a decent medical background but honestly I am lost for words. Thank you to all the passionate & loving people in the world. Every time you share your experience it soothes someone else’s heart. xo

    • Thank you Barb. My dad just passed away after 22 years with Parkinson’s. His last year was tough and his last 3 weeks were terrible to go through. My mom had to put him in a psych ward because of Parkinson’s induced psychosis, but no meds at home or there really helped. It was very helpful to read yours’ and others’ comments about the end days. I had been feeling guilty about maybe not getting the right help at the end. My dad was so strong physically, emotionally and spiritually. He was prepared to die and lived strong until his body just couldn’t anymore. He walked into the hospital with his strong persevering attitude. It has been helpful to hear other similarities on end stages though. Makes me realize Parkinson’s really did just take over. We really did care for him well, especially my mom (his wife of 49 years) and it really was just time to let him go. He lived a beautiful life even with Parkinson’s, he even taught snowboarding til he was 65. Passed away at almost 71. Thank you everyone for sharing. Knowing his troubles the last couple of months were due to Parkinson’s and not any last choices we had to make for him has really given me peace of mind. Thank you!

    • Hi barb
      Sorry for your loss, my father had had PD for over 11 years , after a difficult deduction we all agreed it would be best for him to go into a care home where he went down hill in 18 days and was admitted to hospital and in a week he has seriously gone down hill .
      The doctors are not saying anything but he has not eaten in over 10 days he is no longer on a fluid drip , he is only getting tiny amounts of puree food , he is sounding chesty. We are waiting to find out if he is end of life , how long is this likely to go on for

  10. My husband of 23.5 yrs just passed on from progressive Parkinsons.
    He was 64 yrs of age and was diagnosed 8 yrs ago.
    In the past year, I left my job to take care of my husband around
    the clock.
    He stayed at home with palliative care assistance in the last days.
    I am struggling hard,… thinking of the past months, days….hours.
    I read the comments above and feel for everyone anquishing.
    Keep your faith in God.

  11. I have Parkinson’s disease and reading these story’s makes my decision easier. I was diagnosed with PD 13 years ago at the age of 39. I saw my mother suffer with alzheimer’s Disease and to see the disease progress to the point where she didn’t eat or remember anyone and was almost unrecognizable because of this. So, when my time come to that point. I will get in my car and close the garage, put the car on and put Marvin Gaye on the radio and say good bye.

    • I hope you have changed your mind about that, Brian. I would encourage you to talk to a pastor who can tell you how to get help from Jesus. Just because there is suffering does not mean there is no point in life. My dad has Parkinsons and has had it for 16 years. He has been important to our family all these years and still blesses us with his presence now. God loves you and has a purpose for your life. God will use what you experience to bless you and others. You can use your suffering to encourage others.

  12. My father was diagnosed 13 years ago but I truly believe he’s exhibited symptoms for years before. He is now 69, just lost his wife and is on the final stages. Every day is more heartbreaking than the next. At moments he’s coherent and his witty self and can hold a conversation, but 90% of the time he’s delusional and frantically paranoid about a few set themes that have now ruled his life. I am beyond heartbroken. He doesn’t shake for the most part, this disease has riddled him from the inside out. My thoughts and prayers go out to all in this same situation, there are no words,just gut wrenching exhausting heartbreak.

  13. My sweet wife was diagnosed 11 years ago she is 63 now. She has bravely fought this but iIs apparently in last stages. Swallowing issues dimenta hardly walkiing. She was such a health nut and an acerbic instructor and this horrible disease has taken its toll. The mental paranoia issues are the worst. She called police on me at midnight I was asleep. Sorry to rant I really don’t know how to do the next year or so I am still working and supporting us. Part time caregiver is a God send. God bless us all.

  14. Hi just got here. I am so sorry Gods children have to go thru this disease. I watch my husband deteriorating before me and I ask Why?. He has Parkinson,Alhzeimer, Sigmoid CAncer, COPD, Pacemaker, Thryoid and recently a Colonostomy. His legs have cramped up and soon his arms will stay crossed against his chest. But the bedsores of this heels is what worries me the most. Some days he will sleep 30 hours making giving him his medication difficult. I push thru the day by reminding myself @He chose me, I chose him, God gave me to him and God have him to me because he knew that this time would come and that he would need a caregiver 24/7/365/. When we see each other in Heaven I just want him to remember that I tried to take care of him the best that I could.

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