Forums | ParkinsonsDisease.net has forums, and the internet is absolutely full of great information on this condition. There's lots of information on Lewy's online as well. Facebook has some good forums for sufferers and families as well, regarding both conditions.
If you have any specific questions do give us a chance to answer as well; we do have members with family dealing with both conditions. My brother had Lewy's.
Just type us out a specific question and we will be happy to answer if we are able on the Forum. And do check out those Forums specific to Parkinson's and families dealing with it.
Best of luck and sure do welcome you to the Forum.
My husband is also in his 10th year and is in the moderate dementia stage. I am his 24/7 caregiver with a companion caregiver coming every other week so I can get out. He is 66 and I am 59. Two years ago I retired to be his full-time caregiver. It is a very rough road with a lot of unknowns as he progresses. He walks daily at least a mile so his mobility is still pretty good which ac.tually makes dealing with the dementia harder as wandering is a problem. I use an angelsense watch for tracking and communicating and door alarms that sound if the door is opened.
We don't go out much as he cannot handle public spaces very well and freezes.
My husband has had parkinson's for 16 years. He can only walk a few feet. Uses wheelchair in house. Am his POA. Took away computer and cell phone few years back. Was computer genius and was going to give charity money to scammer. Psychiatrist told him if he did he would have a guardian appointed. Had extra questions put on 401K. Nobody with any kind of dementia should have financial access. His mobility will lessen over time and it will be easier then with escaping. An adult day care would give you a break and things to do for him. Some church organizations have them. Some support groups allow you to take him and some have care at the meetings. Some also have zoom. He will progress through all 5 stages if a heart attack or stroke or cancer doesn't take him out first. He will become incontinent. That super beta prostate reversed that for my husband for now. He can toilet himself but men have strong arms. My husband can be alone while I go out. He draws or does crafts or reads or watches TV. I have to cook and clean and laundry and financial. I did paperwork at work for disability and SS and for long term care insurance. He is stage 4. Sounds like yours is stage 3. Stage 5 they are bed ridden, doing everything for them. Some have trouble swallowing and then you do puree foods. When they rate the stage they only look at motor symptoms. They don't take into account the memory problems. Parkinson's is listed under dementia at most assisted living facilities. Can you hire a caregiver a few hours to clean and do laundry or give you a break out? Do respite if you can in a facility. They allow up to 30 days. You could get a vacation. I set up for facility and would do 3 days at a time when relatives visited. Also did 30 days when had surgery. You need a plan for emergency for you. You just have facility do assessment and they are their if need be and have shuttle buses and can ev n pick them up and drop off. What would you do if you had a kidney stone get stuck and you went to ER and were kept a day or 2? Set up backup.
Getting hospice for Parkinson’s disease is not an option in general. There is long, slow progression and PD is not deadly disease.Doctors need to establish people have six months to live and nobody knows how PD will progress.Perhaps once people reach stage 5, which is final stage and they have other co- morbidity then something can be done.Many say most people with Parkinson’s disease don’t reach stage 5, common cause of death is aspiration pneumonia or falls.
My brother was diagnosed with Parkinson's in 2017 when he was 70. He went into a nice retirement place in 2020, first in independent living, later to AL. He stopped calling me since last year which indicates his condition is getting progressively worse. The last time I texted and used his email in March 2023, I never got a reply. When I checked into his AL, his caregiver told me he is doing fine. Since he lives about 20 miles from me in the best of care, I do not worry about him knowing he is well cared for.
My husband has Parkinson, no dementia, diagnosed in 2015 but it was there before as GP noticed some changes, so about 10 years as well.First 5-7 years we hardly noticed anything, travelled and led busy, active lives. He fractured his hip 2 years ago, things change as he is not as mobile.But very independent, except for cooking, cleaning. Very involved in intellectual pursuits. Parkinson is cruel disease, but, people with it being more susceptible to other conditions/ diseases makes it worse. Like cancer.He is in lot of pain, which is difficult part and drs seem to ignore it. We do have arrangements with 2 agencies, respite care, friends who would show up in the middle of the night if needed. There is no way if he progresses to stage 5 or gets unlikely dementia that I will be able to do it alone.We have arrangements for different scenarios.
My husband was diagnosed with soft palate cancer in 3/20 just as the pandemic shut everything down. I had to leave him at the door of the hospital 5 days/wk. for 7 wks. and wait in the car for 3+ hours each day as it was too far to go home.
Soon after, he showed signs of Parkinson's and on the tail of that he was diagnosed with dementia. He can't figure out how to use the computer or phone, even the remote for the tv anymore. He takes a very long time to eat, though that could be related to the throat cancer treatment (which he has been told is no longer there - they won't say cured.)
He is home, I am retired - I am 71, he is 83. He gets anxious if I am not nearby. We will be married 40 years next week. I have POA, and am now responsible for all payments, cleaning, shopping, meals, doctors' appointments, etc. Not really retirement.
He can walk around with a rollator and will walk with someone (as he might not be able to figure out which way to turn) around the block a couple of times a week, but it tires him out and he has what we call the "stutter step". He has had a couple of bad falls though not broken anything. My daughter has been here since last July. Planned to be here 3 weeks only but is now planning to leave in November. I'm not sure how I will manage then.
Find out all you can about options for in home care and what facilities are nearby. The county Office for the Aging might be able to help with info. It is exhausting to think about it but make the first call and it will help you feel better in control because you will have facts with which to work.
May you rest and feel strength in these trying days.
Jess4Him: My son in law's mother is a Parkinson's with dementia patient and struggles. As you are a decade into care, please seek respite if at all possible to ATTEMPT to curb exhaustion. Online support groups for Parkinson's exist and could be quite beneficial to you.
My husband has moderate dementia that began in 2016. His mobility began to deteriorate around that time, too. His new geriatrician believes he may have Lewy Body and Parkinson’s. He also has controlled A-fib. He is 75 and it’s been a hard journey for both of us.
Hi Peggy. I know the strain you must be under. My husband has PD. It’s a hard gig. Take what ever assistance you are offered and please take the respite . My husband is 88 years old and I’m 72 I lost 12 kg caring for him ,after many falls and a op for a brain hematoma he was placed into care . In the beginning it was hard and you carry a lot of guilt. He is doing well and basically now lives in his own village . So after 18months I’m ok now and solo living . Taking a holiday next month to Vietnam. I’m in the last season of my life and grabbing by the throat and running. If you every need just someone I’m here for you 💋
Jess. If you go up to the blue timeline at the tops of the page, the AgingCare line, you will find a little magnifying "search" symbol. Press on that. Type in Parkinson's and you will find a lot of posts from people dealing themselves, or having family dealing with this condition. Also look to the alphabetized care "topics" listed under that word. If you have specific questions, do ask each individually, and await answers. I sure am sorry you are dealing with this, and I sure send you the very best. Await any specific questions you may have of us.
If you have any specific questions do give us a chance to answer as well; we do have members with family dealing with both conditions. My brother had Lewy's.
Just type us out a specific question and we will be happy to answer if we are able on the Forum. And do check out those Forums specific to Parkinson's and families dealing with it.
Best of luck and sure do welcome you to the Forum.
She developed dementia along with her Parkinson’s disease.
Your profile says that you can’t leave your husband alone. You must be exhausted. Have you considered hiring some help or placement in a facility?
We don't go out much as he cannot handle public spaces very well and freezes.
Jess4Him, friends and family are a necessity.
Call PCP , get order for hospice evaluation and admit if hospice eval. deems him appropriate. ( Bet he is)
If you already have hospice care, confer with team about potential facility placement.
If on hospice services they can also provide you with 5 day respite care for him
So that YOU can take a BREAK.
Have case manager help you navigate options for his care going forward in home or in placement.
If he is veteran, call VA for benefits info
He fractured his hip 2 years ago, things change as he is not as mobile.But very independent, except for cooking, cleaning. Very involved in intellectual pursuits. Parkinson is cruel disease, but, people with it being more susceptible to other conditions/ diseases makes it worse. Like cancer.He is in lot of pain, which is difficult part and drs seem to ignore it. We do have arrangements with 2 agencies, respite care, friends who would show up in the middle of the night if needed. There is no way if he progresses to stage 5 or gets unlikely dementia that I will be able to do it alone.We have arrangements for different scenarios.
Soon after, he showed signs of Parkinson's and on the tail of that he was diagnosed with dementia. He can't figure out how to use the computer or phone, even the remote for the tv anymore. He takes a very long time to eat, though that could be related to the throat cancer treatment (which he has been told is no longer there - they won't say cured.)
He is home, I am retired - I am 71, he is 83. He gets anxious if I am not nearby. We will be married 40 years next week. I have POA, and am now responsible for all payments, cleaning, shopping, meals, doctors' appointments, etc. Not really retirement.
He can walk around with a rollator and will walk with someone (as he might not be able to figure out which way to turn) around the block a couple of times a week, but it tires him out and he has what we call the "stutter step". He has had a couple of bad falls though not broken anything. My daughter has been here since last July. Planned to be here 3 weeks only but is now planning to leave in November. I'm not sure how I will manage then.
Find out all you can about options for in home care and what facilities are nearby. The county Office for the Aging might be able to help with info. It is exhausting to think about it but make the first call and it will help you feel better in control because you will have facts with which to work.
May you rest and feel strength in these trying days.
If you go up to the blue timeline at the tops of the page, the AgingCare line, you will find a little magnifying "search" symbol. Press on that. Type in Parkinson's and you will find a lot of posts from people dealing themselves, or having family dealing with this condition. Also look to the alphabetized care "topics" listed under that word.
If you have specific questions, do ask each individually, and await answers.
I sure am sorry you are dealing with this, and I sure send you the very best. Await any specific questions you may have of us.