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end stage parkinsons question

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Old 03-03-2007, 06:02 PM   #1
Join Date: Mar 2007
Location: hernando, fl
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ladypb HB User
Question end stage parkinsons question

my mom has had parkinson's for about 15 years, Dr said she is in end stage i have tried to find info on how long end stage lasts but nothing. she doesn't open her eyes anymore, speech is very slurred, incontinent, wheelchair or bed ridden. she gets a U.T.I. every few months, all food has to be pureed, she cant swallow very good also chokes. last week she got food in her lungs. had to go to emergency room to suck out lungs. she wasn't able to breath. My sisters live all over the united states and want to know how much longer they have to visit her. i don't know what to tell them .right now she is in hospital with a bad infection. but getting better. thanks for all the info i can get cindy

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Old 03-06-2007, 06:18 PM   #2
Senior Member
Join Date: Oct 2006
Posts: 114
Busygirl HB User
Re: end stage parkinsons question

I am so sorry about your mom.
No one can predict how long end stage lasts. Every patient is different.

Sounds like her health is steadily decreasing. See if there is a local Parkinson's support chapter in your city, if not, go to their main website.

Please set some time aside to care for your own needs as well. It sounds like you may be the sole caregiver? You need to be healthy to care for her.
Tell your sibs you need a break and ask them to come spend some time caring for your mother.

Wishing you the best.

Old 03-20-2007, 05:38 AM   #3
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Location: cape cod, ma
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dancersmom HB User
Re: end stage parkinsons question

How I feel for you girl!! My dad passed away in May. You have to be strong. Let me ask you, have you thought about hospice care? We had them for my Dad at the end. They were very supportive and helpful. He was able to pass away at home and we were all there, its just something to think about.

Old 03-27-2007, 02:07 PM   #4
Join Date: Mar 2007
Location: Carlisle, Cumbria, UK
Posts: 2
Lily28 HB User
Re: end stage parkinsons question

Hi I'm interested in knowing how other's cope with family with advanced Parkinson's, my mum's been in hospital for 3 months now in the latter stages of PD. She has had it for about 12 years and lost her sight in the process. she was very independent prior to admission but is deteriorating rapidly. i guess she has lost about 10lbs a month since going in & it's pitiful to see her like this. she suffers a lot from a dry mouth which makes her gag & choke. she has hallucinations too which is hard to deal with. although sometimes when i visit her, she seems fine & quite chatty & switched on to what is happening.

has anyone had any experience of stopping parkinson's meds? I feel that a lot of the time, it's a case of the 'devil & the deep blue sea'. by that i mean the parkinson's causes problems but so do the meds, so is there any point in taking them?

I've looked at a few threads on here and so many people seem to have suffered watching their loved ones in terrible states. how can we deal with this for the best?

glad to hear any replies as is always a comfort to know that other's know how hard it is to watch this horrible disease destroying good people.

Old 03-31-2007, 06:24 PM   #5
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Busygirl HB User
Re: end stage parkinsons question

Re: the halucinations, have you tried keeping a light on at night? That seems to help decrease the halucinations.

Maybe someone else can comment on stopping the meds.

Wishing you well.

Old 04-04-2007, 01:55 PM   #6
Join Date: Mar 2007
Location: Carlisle, Cumbria, UK
Posts: 2
Lily28 HB User
Re: end stage parkinsons question

Thanks for your reply busygirl. funnily enough my mum always wants a light left on at night anyway even though she's blind too, although can detect the difference between light and dark.

she's just so frail and thin and i wonder sometimes if the meds are just prolonging the inevitable, so if any other readers have experience of medication withdrawals i hope they could advise. haven't had the courage yet to ask her doctor.

Old 05-25-2007, 07:18 AM   #7
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Join Date: Apr 2007
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Terrigrrl HB User
Re: end stage parkinsons question

My father passed away in Januray after living with Parkinson's for about 10 years. He thought he could chop up some wood for the fireplace and fell. He broke his femur near the hip and they did operate, but he did not wake up for 6 weeks. After that, he was sometimes cognizant yet often times not. Much of it had to do with a mixure of pain meds and his Parkinson's meds along with mega doses of antibiotics.

This happened last November and it took him 3 months to pass. At the end, he made Terri Shaivo look healthy. He was in so much pain that we decided on "comfort care", which is actually a form of euthenasia, administered by larger and larger doses of morpheine.

All I can say about the whole situation is that it made me decide that if that ever happened to me, well, I would take measures into my own hands. No, I'm not talking suicide, I'm talking taking the best care of myself possible until the end stage and then, well...I suppose that's up to me.

My best to all of you out there who are suffering. This is one disease that needs more examination and a push for a cure.

Bless you.

Old 06-19-2007, 05:32 AM   #8
Join Date: Oct 2006
Location: Al
Posts: 6
lesa777 HB User
Re: end stage parkinsons question

We have tinkered with my Dad's meds for years we have taken him off and when we do that his parkinsons symptoms worsen so it is either sides from the meds or the effects of the parkinsons there is no way to get around one or the other sorry I could not tell you something better.

Old 07-07-2007, 06:48 AM   #9
Join Date: Jul 2007
Location: Madisonville, Louisiana
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Jonell139 HB User
Re: end stage parkinsons question

I am a newbie! My dad has Parkinsons and Shy Dragers. Its just me and my mom taking care of him and probably pretty soon hospice. We have no idea what to expect towards the end. He has been basically bedridden for quite some time. He is having problems breathing at night and is almost ready for a feeding tube. We can barely hear him when he talks and there is a gurgling sound in his throat. Can you give me any clue what we are in for or how much longer we have with him? It's so horrible, his mind is as sharp as a tack but his body is killing him. I hate this disease! I would rather him have dementia, that way at least he would not know what was going on. Please respond and give me some advise!

Old 07-13-2007, 11:24 PM   #10
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WannaBeFreeToRoam HB UserWannaBeFreeToRoam HB UserWannaBeFreeToRoam HB User
Re: end stage parkinsons question

Hi Jonell139,

Please rethink the decision about getting a feeding tube for your relative!!!

In my opinion, no one should have a feeding tube, unless they are not ill, otherwise and can walk and talk and enjoy life. My MIL had one put in, because my FIL talked her into doing so. It is an operation and just prolongs and ill person agony and terrible way of life...

Think about this, unless yall have already done it.


Old 03-29-2008, 09:31 PM   #11
Join Date: Nov 2006
Location: Il
Posts: 61
Rhoda55 HB User
Re: end stage parkinsons question

Hi everyone! Watching a loved one suffer through parkinson's is truly a terrible thing to have to witness, let alone the poor loved one that has to live with it. My Mom was diagnosed over 10 years ago. Up until the last year and a half, things weren't to bad, just the weakness in her arm, and the tremor in her hand. At that point, she was walking with the aid of a cain.Then from there, she went to a three wheel walker.Then she had a tia stroke last June, and from there, everything got worse. She is now totally wheel chair bound,can't eat or swallow without difficulty. In fact, she chokes and has had to be put on a mechanically prepared diet and thickened liquids. She breathes through her mouth and sounds breathless with little exertion. She has bouts of dementia,can no longer manage the things we all take for granted like brushing her teeth,feeding herself,or getting herself to the toilet.She can no longer walk or stand at all. Like everyone else with parkinson's disease, she has dropped a lot of weight and is down to 85 to 90 lbs. I think we all wonder how much longer do these poor people have to suffer like this. Only God knows. I know how awful it is to witness this, and the feeling there is nothing we can do. I think the hardest part is having to become the parent, and not the child anymore. Having to make these difficult decisions like nursing home care. Mom requires 24 hr. care and I have been caring for her since she came out of rehab in august. Two weeks ago, we had to admit her to a nursing home because she was unable to eat even baby food without choking,she had bowel incontinance, and I was having a hard time lifting her out of the bath tub and getting her out of bed and also getting her from the wheelchair and onto the commode. My heart goes out to all of you and your families that are suffering with this terrible disease.

Old 05-15-2008, 06:51 PM   #12
Join Date: May 2008
Location: versailles,kentucky usa
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indialoca HB User
Re: end stage parkinsons question

my father in law has had parkinsons for quite some time but for the last year he has went down hill. he can no longer dress, feed, bathe hisself. when he is in his wheelchair he has to be restrained from falling out but with the restraints he still slides out. he is on medications but still has up and down days. he chokes on foods and liquids. he is 78 years old this year. any idea how much longer he will live.. his speech is very weak and sleeps all the time. he can not do anything physical and his mentality state is not good..

Last edited by Mod08; 05-16-2008 at 04:57 AM. Reason: Protect your privacy - do not post your full name.

Old 05-16-2008, 09:45 PM   #13
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Tiffany80 HB User
Re: end stage parkinsons question

To : Indialoca
I know exactly what you are going through, my father died 1 year ago from Parkinson's Disease. He was 79 and had lived with the disease for around 20 years. He also did well until the last 2 years, then it was difficult for him to do even the most simple tasks. He never lost total control and fought until the very end. He died of pneumonia, most Parkinson's patients do. They develop bladder infections and lung problems in the final stages. It does sound like your in-law is in the final stages. Only God knows for sure and it is in his hands but the signs are there. If that is the case, I would guess him to have maybe a year to live but again everyone is different. Enjoy the time you have with him. I understand your pain.

Old 03-28-2009, 05:20 PM   #14
Join Date: Mar 2009
Location: millbrook alabama
Posts: 1
susanalabama HB User
Re: end stage parkinsons question

My father was diagnosed with parkinsons just in november. He is already in the end stages of the disease. The family just doesnt understand how his has progressed so fast so soon. Most people have it for years. Now i have to say this he also has several other issues going on renal disease, gastro problems due to diabetices and degeneration of the spine. Our mother passed away in oct. and he is now fixing to pass away they give him less than 4 to 6 weeks. He has been in and out of the hospital every month for the last 6 months. We just brought him home to die a natural death at home and not in the hospital. My husband myself and my teenage children are his caregivers. I have a sitter that comes in monday - friday for 8 hours while we are at work. We have hospice now which is helping. This is the worst disease i have seen, its hard on the patient and on the family. He now no longer knows who we are, which is the hardest for me. I am sorry for going on and on. Has anyone heard of this disease coming on so fast. He is a man that used to be 250lbs a year ago to now weighing 146 and he is 6 4 he looks so bad it breaks my heart.

Old 04-02-2009, 04:22 AM   #15
Join Date: Apr 2009
Posts: 3
sunshine999 HB User
Re: end stage parkinsons question

we had a very successful treatment of this disease.
My mum had the symptomy since the early 90th. All drugs she got didn't help in any way.
Then we came to know a group of persons who do spiritual healing. Ehry worked with my mum for about 1 year and I am so glad that I can say that she is cured completely.
Don't hesitate to ask if you want to know more about this.

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