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I am an only child caring for my father, age 90, and has had Parkinson's Disease for 10 years, but probably longer. He did well with it on C/L for many years, even after a stroke, which he fully recovered from. He also has CHF, T2 diabetes, and other issues. He did rely on a walker but lived alone for 7+ years until recently with just part-time caregivers. About 6 months ago, he started to decline rapdily. He told me his legs would freeze up when trying to walk and there were many times my husband and I had to go help him up off the floor. Then the falls started, just minor at first. I begged him to move to AL but he refused. Then one morning at end of May my caregiver found him on the floor, face down, not sure how long he'd been there but he'd had a serious fall. Trip to the ER, followed by surgery to fix a herniated disc, 2-week hospital stay then rehab, and now he's in long-term care at the skilled nursing facility where he did rehab. All doctors and PTs etc. say he cannot live alone, and he has no other family, he has outlived everyone - it's just me, his only child and my husband. I have a teen daughter and a job, so I cannot take on full-time care for him nor do I want to, so unfortunately long-term care is the only option. I am having to clean out his huge house of 45+ years on my own and sell it to pay for care. It's just been a lot the past month and a half, and I am overwhelmed and burnt out.



My dad now needs 2-person assist to get up and down, cannot walk but a few steps with assistance, can't dress himself, etc. He definitely has some cognitive decline happening as well, as he has had hospital delerium and now it seems that has stayed as he has periods of seeming totally lucid and fine, and then he's very confused and has delusions or thinks he's back working in management at his old corporate job. I had noticed some mild congitive changes a year prior to the fall - he fell for a phone scam and it was a living nightmare to get him to see he was being scammed and I was not the bad guy and it cost him $10K. Then he became more forgetful, missing meds sometimes, things like that, so I extended caregiver's hours to be there more often because he insisted on living alone and I was scared of a fall happening that would cause decline like this and that is what happened.



My dad's neuro was useless. We've been trying to get in with a new neuro that specializes in PD and we had an apt then I got Covid and couldn't take him, then boom, the fall happened. We do have an apt. in a couple of weeks with this new neuro, but I was wondering if others have been through something like this with an elderly person having fast decline after a fall/surgery type of event?



In addition to the mobility issues now, and the definite cognitive issues, my father has also lost around 27 lbs since this happened end of May. He is still eating but not much at all, he says he doesn't have much of an appetite. He sleeps much of the day and is very tired all the time. Twice he was found unresponsive at the SNF - the first time, they rushed him to ER and they ran a bunch of tests and found nothing. Second time it happend the doctor was there and realized it was due to low BP and it was happening when he was being helped up from lying/sitting to standing, he would pass out. They have adjusted his BP meds and that seems to have stopped the episodes. He also just had his first UTI that caused an increase in confusion and he is still being treated for that. With all of these things together, the loss of mobility, delusions, short-term memory issues, not eating much, weight loss, sleeping a lot, low BP blacking out episodes -- are all of these things signs of end-stage PD? I am just trying to prepare myself for what is coming, and also what to ask the new neuro about. I also wonder when I need to approach the subject of when to get a Hospice evaluation, I don't know if he is there yet.



Anyone else with a LO with PD that can help tell me about end stages?

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PD patient here responding to you. I suggest you contact the Parkinson's Foundation at 1 800 4PD INFO today and speak directly to an experienced person who will give you lots of help for free.
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My dad had PD for years and was pretty slow in the decline. But at the end, all his symptoms worsened very quickly. Once he was falling all the time, & he could no longer swallow--he refused to get out of bed. Hospice came onto the scene at that point--he lived about 2-1/2 weeks on Hospice.

Time to talk to his Dr and get the info. He won't get 'better'...and at least you can make him comfortable. That's the kindest thing you can do now.
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Cdriver Jul 2022
Thanks. Very sorry about your dad too.
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Check with the neuro but it seems you could get hospice now. He’s 90, has Parkinson’s and this is what dying looks like. He won’t get better and please plan accordingly. Very sorry.
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Cdriver Jul 2022
Thank you. I plan to discuss with neuro next week.
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Now is the time to call Hospice. Your father meets all the criteria. They can help him and, even more important, Hospice will help you get through this.
Don't wait until it is too late. So many wait too long.
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Cdriver Jul 2022
Thank you. I plan to discuss with his new neuro soon.
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My sympathies for you and your Dad. YES ask for hospice evaluation, with the falls and weight loss he should qualifiy. They do NOT make him die, they help him and you navigate the final stages of life. They provide necessary equipment, comfort meds, counseling, spirtual support if you want and GRIEF support even after the loved one has passed. There is no guilt only grief. You have done the best you can do and everyone's limit is different. My Mom (Alz D) has been on hospice for 22 months, then off for 6 months and is back on hospice since Jan. She is 96 1/2 yr old, clueless about everything and just keeps living. It is the long, pianful goodbye, but she has very little pain or anxiety.
Like Alzheimers, PD is different in each person. My BIL (78) showed signs about 6 years ago but did not get answers for 2 years. He has gone from a strong, smart (PhD smart) athelete to a fraile weak, man who can not do much of anything in the last 2 years. My sister had to place him in Feb when the Dr told them neither of them were safe to continue home care -even with help. He has Lewy Body Dementia too. When she first moved him, he told everyone she had sold their home and was living with a new boyfriend, so very painful to hear. She visits him 3 or 4 times each week. He has NOH and the staff finally sees it coming (he gets tremors, tilts to one side and can go down in a flash) due to the BP suddenly dropping. They MUST keep him hydrated and have salt pills near by. Adjusting the meds in a care facility is very hard and my sister actually pays a former CG to come 3 nights a week to over see his evening routine. I totally agree to reach out to the Parkinson's foundation, a great resource.
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Cdriver Jul 2022
Thank you so much for all this, very helpful. The dr at our NH is very good, thankfully. She says she did a depression screening on my dad and he was def depressed so they are gonna try a SSRI. I mean of course he's depressed...his whole world was just changed in an instant. She thinks this is why he's lost so much weight, and maybe it's part of it but I believe the PD is also part of it. We are seeing a new neuro in 2 weeks so hoping to get some answers and discuss Hospice evaluation. We found out yesterday at cardiologist that his kidneys are declining rapidly too...he already had stage 3 kidney disease so waiting on lab work to come back to see where that's at.

The long slow goodbye is heart-wrenching I am sorry you are going thru it too. If this is the end for my dad, I just keep praying for it to be fast and painless for him, this ongoing decline and all the medical treatments and tests is just so much.
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It’s worth remembering that the hospice evaluation doesn’t mean that you have to go ahead with hospice if he qualifies for it. Just the evaluation might provide you with good information about 'what to expect'.
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My father passed away from complications of PD. I'm so sorry, it is a horrible, absolutely debilitating disease. It takes away the ability to just about everything. My father also had hallucinations along with dementia. The medications they gave him really were not much help at all, there is no cure. The only place for him was a SNF. The staff at the nursing home were terrific, they really went above and beyond to care for him. Eventually your father will need someone to do everything for him, including feeding and changing him. My father died of pneumonia because he didn't have the strength to clear his lungs anymore.
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Cdriver Jul 2022
I am so sorry about your dad. Thanks for your reply. I am comforted hearing that most PD patients need SNF care as that helps me deal with the guilt I feel about him being there. He already cannot do much, he is completely incontinent, but does still get help in trying to use toilet. But that has been going on even before NH. He can still feed himself but he just has very little appetite. I just wish I had a better idea how long this could last, though I know it's different for everyone.
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My father has Parkinsons, COPD, Diabetes, and he is 84 and all I can tell you is that when the Parkinsons body experiences trauma, the symptoms progress rapidly, but the patient has the opportunity to regress the symptoms. I base this on my experience with my father, he went into the ICU for pneumonia (he was at Stage 2 Parkinsons) in Nov 2021 and was in ICU / SNF until March '22. SNF said he is hospice, there is nothing they can do for him anymore; he was in Stage 5 Parkinsons.

I was pushing for hospice too because he looked like death, could only whisper to communicate, slept all day, kept getting aspiration pneumonia (4x), got a feeding tube, critical 5 inch open bed sore, got sepsis 2x, got ecoli, it was sad, I didn't want this for him. However, his Geriatric Doctor pulled my mom and I aside & told us not to put him in hospice because my Dad WANTS to live and hospice limits how they care for Dad, they won't pay for physical therapy, won't feed tube him, nor pay for occupational therapy, etc. What got me was when I asked the Hospice companies (I interviewed 3 different ones) if they would starve him to death because feeding him thru his tube is "life saving" and they confirmed they indeed would not feed him. That's what got me, I couldn't starve my Dad, that's not right. So, we brought him home, insurance set up in home PT, OT, and swallowing therapy, we gave him his parkinsons meds at the SAME TIME during the day (hospitals & SNF get too busy to be able to give meds at exact time which is SO IMPORTANT to manage the symptoms), hired a full-time caregiver 24 hours / 7 days and I gave a created a detailed careplan for the caregiver (one of the most important tasks for Parkinsons patients are to do the physical therapy / stretching everyday). After 3 weeks of this, he progressed so well we reduced caregiving to 8 hours a day, 6 days a week. Within 2 more months, he eats through his mouth, out of diapers, able to get himself out of bed, and is at Stage 3 Parkinsons. He does use a walker & wheelchair 95% of the time cuz he shuffles and his COPD makes him breathless. We have been able to reduce care to 4 hours a day, 4x a week and the purpose of the caregiver at this point is to keep him active with physical exercises, get him ready for the day, make him breakfast, companionship and honestly....to give my mom some sanity, go do errands, read the paper, etc. :) I acknowledge that 1on1 care is expensive and I get not everyone can afford to do this, I am just sharing my experience (my parents have taken out a loan to pay for his care).
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Evamar Jul 2022
cyahere,
Thank you for sharing.
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Sounds like you are going through a lot of the same thing I went through from March to November 2021. My dad kept passing out and they could never figure out why he ended up in long term care after the last episode in Aug 2021 and rehab. I would strongly recommend you talking to his social worker they can help you decide on hospice. I’m actually surprised the social worker hasn’t talked to you. Does he have a living will if he does you need to find out what it says. My dad did and it said he didn’t want any type of life support etc. when he had his last episode in August and they took him to er the next day his social worker got in touch with my sister and said that she probably should sign a dnr because his living will states he doesn’t want any life sustaining care and without the dnr they would have to do cpr until emergency response got there and took over and if he was still unresponsive when he got to the hospital they would place him on life support. Luckily he was able to be in a great nh that knew how to handle all of this. His social worker was on top of everything and really helped us navigate through it all. I wish you the best.
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My dad had Parkinson's and passed away in 2020. He and my mom moved in with me the year before, so I had only about a year's worth of observation/experience with it.

In that time, he fell probably four or five times. For a while, we were able to get him up (although we had to call EMS for assistance the first couple of times), or he managed to get himself up. The last 2 times, EMS took him to the hospital because they wanted to have him checked out. His BP wasn't an issue, but he was having kidney issues - the first time he came home from the hospital after spending about a week to a week and a half in the hospital and their rehab.

The second time, he went from the hospital to a rehab off-site (NH, essentially). They took fabulous care of him, but his kidneys apparently were failing. Due to his insurance (he had Medicare and private health insurance), most of the care was paid for by insurance. We were planning to have him come home into a hospital bed (Craftmatic adjustable that we modified) when he passed.

It's possible that the things you describe are part of the "end-stage" PD process, but it's hard to tell without testing. I don't know whether they would run a kidney function test, but it sounds similar to what my dad went through in the months before he passed away. What others have said about hospice is good advice - it wouldn't hurt, and you don't need to start it right away.

May God bless you and your dad and give you some peace!! What you are doing is not easy, and it doesn't get easier. We lose them in bits and pieces, and it's only afterwards that we have the space to grieve, I think. <3
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