talk to me about late stage Parkinsons

[Anonymous]

People say "you don't die from Parkinsons, you die with it." My dad has an atypical Parkinsons like syndrome. No one has given us any realistic sense of how to plan for the future, maybe because they are not sure since it is not typical? Has anyone else dealt with this? My dad is in his mid-80's and his health is extremely fragile (regulation of digestive system, blood pressure, sleep, etc is all out of whack, and he's pretty shaky walking around) but mentally he's mostly with it. I'm just trying to plan for the future, with questions like, could he live another 10 years? Will he move beyond home care at some point (we have in-home help now 12 hours a day)? I imagine it's not super easy to get into skilled nursing with no notice, so I'm wondering, should we be getting on waiting lists? Any thoughts, advice from those who have been there/done that would be most appreciated.

[Anonymous]

If he’s already having autonomic nervous system involvement, which it sounds like he is, his remaining life expectancy is not going to be more than a few years. There are outliers, of course, just like some in the same condition would pass within a year or even months. It is very heard to say.
Ask him what he would like. It seems you have a good setup in place. But you’ll need to have the talk about how much he wants done. Will he want to be on tube feedings or receive any additional life-prolonging measures? Is he open to Hospice or Palliative care?

[Anonymous]

Hi - my mom has Parkinsons and I know how hard this is.

Can you go with him to see his doctor to ask some of these questions? I've gone with my mom to her doctor - and it's helped me feel less like I am grasping for any info at all.

Or if you're not local - or can't get out for his doctors appointments - can you ask him to ask his doctor if they'll have a phone call with you?

[Anonymous]

My Dad died "with" Parkinsons last year. He went from being sort of OK...though with lots of different issues...to just falling apart. I think the biggest issue for him was needing a catheter. After that he had frequent UTIs and lost mobility while recovering each time. He could just not recover enough before he was sick again.

Please also be very aware of how big an issue bedsores can be. It might seem like the biggest issue but trust me...If turning every 2 hours is recommended...set your watch. Pay someone to help.

[Anonymous]

This is OP--I can't really have a frank conversation with my dad's doctors in front of him because my parents are in denial. They are expecting my dad to "get better" and do not want to hear otherwise. And what do I know, maybe he will improve somewhat...but lately he hardly gets out of bed. We are alert to the issue of bedsores and the risk of infection/sepsis.

[Anonymous]

Anonymous wrote:This is OP--I can't really have a frank conversation with my dad's doctors in front of him because my parents are in denial. They are expecting my dad to "get better" and do not want to hear otherwise. And what do I know, maybe he will improve somewhat...but lately he hardly gets out of bed. We are alert to the issue of bedsores and the risk of infection/sepsis.

I'm really sorry. That's hard. My dad is in denial about my mom's Parkinson's, but not to that degree, and it still really sucks. Like he doesn't feel any urgency to move out of their house - which requires my mom to go up and down stairs - because he thinks that it's important for her to get that exercise. I think he really doesn't get that the stairs also put her life at risk.

Could you ask the doc if you could give them a call, without your dad there? Or schedule a consult just for the two of you?

[Anonymous]

OP is your dad in the DC area? If so, look at Capitol Caring. It’s not just hospice, they also have “advanced illness care” that includes house visits and can be really helpful. Or maybe look for advanced illness or palliative care where your dad is.

Most regular doctors aren’t very helpful about this. I’m sure some are.

[Anonymous]

My grandmother with Parkinson's had severe dementia. She fell and broke her hip, crawled to a chair and didn't tell anyone for hours and hours. After we figured out she was injured, she had emergency surgery for her hip and died of an embolism in surgery.

Honestly, we were relieved as there was no way she could have gone through PT to recover. She was terrified of the hospital, nurses and everything. She was continuously confused and agitated even at home (and despite meds), and near frantic in the hospital. Her quality of life was already long over. She didn't know us and saw scary delusions all the time.

If it hadn't been her hip, it would have been pneumonia from aspirating food or a UTI or something else. We had been expecting for her body to fail, as her mind was already completely gone. She was mid-90s.

[Anonymous]

Anonymous wrote:People say "you don't die from Parkinsons, you die with it." My dad has an atypical Parkinsons like syndrome. No one has given us any realistic sense of how to plan for the future, maybe because they are not sure since it is not typical? Has anyone else dealt with this? My dad is in his mid-80's and his health is extremely fragile (regulation of digestive system, blood pressure, sleep, etc is all out of whack, and he's pretty shaky walking around) but mentally he's mostly with it. I'm just trying to plan for the future, with questions like, could he live another 10 years? Will he move beyond home care at some point (we have in-home help now 12 hours a day)? I imagine it's not super easy to get into skilled nursing with no notice, so I'm wondering, should we be getting on waiting lists? Any thoughts, advice from those who have been there/done that would be most appreciated.

There will likely be a precipitating event that will require a change to the status quo. Unfortunately, you don't know if that event will be soon or in 10 years. Usually, it comes sooner than they expect.

[Anonymous]

My MIL has had Parkinson's for 20 years and is still lucid, even though she has the pump medication and can only walk with a walker. She REALLY wants to leave her ultra convenient city apartment, which her aides can get to easily, for a suburb house with a garden, because she used to be an avid gardener. We've had difficulty finding a home without steps to access the garden and with a main-level bedroom and full bath! It's just not possible where she is. So now she wants to move to a house WITH steps, and is being very stubborn about it... just because she wants to die surrounded by a garden, basically. A couple of aides have said they'd be open to living in, instead of commuting.

Her children are OK with purchasing the home, but it's still going to take time, it will need a bit of renovation, etc... I don't know if she's actually going to be around to live there, but ultimately I want what's going to make her happy. She seems lucid every time we talk about the stairs, and the distance from the city, but... I'm not sure she really gets that it may affect her quality of life.

[Anonymous]

We are in a similar position with my father who also has atypical Parkinsonism. His first noticeable symptoms were early 2020. He recently began hospice care and is confined to bed, mostly unable to move and with cognitive decline. In the years between he fell often. He has paid care about 40 hours per week. It’s not enough (12 hrs/day 7 days/week would probably be ok). The decline has accelerated the past few months, so we are attempting to keep him home, but it’s challenging. My mother is exhausted. I’m on-call to help evenings and weekends but I’m not available 100%.

I tried to get his neurologist to give a rough idea of the time he has left. Given how much he declined since his last appointment and the severity of his symptoms, he approved hospice, so obviously feels time is limited. But prior to that he was reluctant to give a timeline, especially since my father was so healthy and active before. Sorry that you are going through this. These are terrible diseases and fairly rare so a bit hard to predict and plan for care accordingly.

[Anonymous]

Anonymous wrote:This is OP--I can't really have a frank conversation with my dad's doctors in front of him because my parents are in denial. They are expecting my dad to "get better" and do not want to hear otherwise. And what do I know, maybe he will improve somewhat...but lately he hardly gets out of bed. We are alert to the issue of bedsores and the risk of infection/sepsis.

Wow, are you me...my dad is in a similar state of Parkinsons and mom thinks he will 'get better'. I'm sorry, I don't think there is improvement at this point-just some stability hopefully.

To my understanding, there are some things that Parkinsons causes that can cause death. Pneumonia from aspiration is one. Falls. Choking. UTI's that can lead to sepsis.

I'm not sure my parents understand or accept that the Parkinsons is late stage now. He's had it for over 15 years and was relatively active up until about 7 years ago. He's got some cognitive impairment, but he is mostly present and aware. I sort of assume that he won't be here in 10 years...although I know according to what I've read it's more like 3-5 years at this stage. Parents refuse home help (other than me or brother) so I assume that eventually something awful will lead to hospitalization (like a fall or uti) and he won't be able to live at home anymore, like, he would be discharged to rehab and then a nursing home.

It's hard OP I know. Crazily enough, outside of the parkinson's, my dad was in relatively good health and probably would have lived to be very old, in fact he's 79 so he has outlived many people already.

[Anonymous]

This is the OP, yeah, my dad has been in poor health for years now and so I think they think he will just continue to have health issues like he has has for years and always get better from them. But to me, it seems like the crises now come like every month and everything is generally failing… Digestion, elimination of waste, sleep, blood pressure regulation…Not having a clear diagnosis makes it easy for them to think well, this is just aging, or a temporary illness, rather than the steady progression of a neurological disease that is reaching its final stage, which is what it seems like to me. So far he’s with it mentally, pretty much, even though his powers of concentration and his ability to do anything practical is pretty much gone. But I worry about whether that will continue to be true and whether caring for him at home will even be feasible; What if he becomes agitated, aggressive?
We are in about as good as situation as anyone could be in and it still is incredibly stressful and crappy and hard in part because of the uncertainty.
Today I floated to my mom the possibility that he might not “get better” And she seemed genuinely surprised. How can this not have occurred to her?! I am continually impressed by the powers of denial.

[Anonymous]

PP here-yes, OP, I totally hear you! The denial runs deep. I have to remind myself, that it must be so incredibly difficult to see your spouse since they were 19 and 21, end up in this condition. My mom actually said to me yesterday, 'if Dad keeps getting better we will take a road trip next summer!' ...needless to say that is not possible and there is no 'better', but I just said oh sounds nice.

One thing we probably don't have to worry about with our dads is the agression and agitation. Mine just doesn't have the physical strength for that, and his voice is so quiet now that he can't yell loudly.

The physical things you listed OP are, to my understanding, related to late stage Parkinsons-my dad is amazingly similar. I also do not know if we can realistically take care of him at home always-I do not actually think so, I think what will eventually happen is that something-a fall, pneumonia, will get him hospitalized and then discharged to a facility. But my parents won't consider willingly going to AL or having home help.

I would say-if you are able to get any good moments with your dad, I'd do that-recently me and brother took them to the beach, got a beach wheelchair and Dad really enjoyed that. And yesterday we went for ice cream and he REALLY enjoyed that LOL. We still have the occasional 'good day' which I am grateful for.

[Anonymous]

Op may I ask a question? Could you elaborate on atypical Parkinson’s? My dad (85 to) has a lot of symptoms—hand flappping/tremor: shuffling walk and lack of balance; significant chest tightness and post prandial congestion but he did not have th dopamine deficiency associated with Parkinson’s so we are back at square one.