talk to me about late stage Parkinsons

[Anonymous]

My father died in almost perfect health otherwise, but with Parkinson's. He could no longer swallow and wasted away, but was totally sharp until the end. His medications were stool softeners and the typical Parkinson's meds.

[Anonymous]

For the PP who asked about “atypical” Parkinson’s, just do a Google search… Basically there are other syndromes where there are similar symptoms to Parkinson’s even though it’s not the classic form.
My parent seems to have all the non-motor symptoms of Parkinson’s but does not have the traditional Parkinson’s motor symptoms, or at least not severely. A neurologist specifically told him he did not have Parkinson’s.
However, he is on the main drug for Parkinson’s and other doctors keep referring to his parkinsonian illness.
Since it’s not like there’s a specific test to diagnose it it’s all a little bit ambiguous.

[Anonymous]

My uncle had it for years. It progressed faster once he developed cancer. Before he knew he had cancer there were more and more falls and other emergencies and he was sleeping a lot. He would have been better off in a facility that could handle it. It really did my aunt in and she declined rapidly into dementia from the stress even once they finally agreed to caregivers.

He chose not to treat the cancer and went on hospice. I visited him on hospice. He had moments of seeming totally lucid and normal and other moments where he was hallucinating all sorts of fun things (may have been the meds). He lingered on hospice for much longer than expected because people kept visiting. They told us to stop visiting once everyone got time with him so he could pass peacefully. It was time and he passed peacefully. My cousins and aunt were barely sleeping and they all ended up with covid (when covid was still scary) from the lack of sleep. I say this because it is so important for everyone to take care of themselves, take breaks, get all the help you can afford.

[Anonymous]

Anonymous wrote: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.

Could you find her a plot in a community garden or see if someone nearby will let her use a patch of their yard?

[Anonymous]

Anonymous wrote: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.

What is hospice care providing? We had my dad in care for parkinsons for six months and after he didn't die they kicked him out of the program. Overall it seemed like a scam - they sent a nurse twice a week and a CNA twice a week who wouldn't even give him a shower. Hospice fired all his doctors so he was left with no care, no doctors, no one to prescribe his meds. It was a nightmare. Luckily we can afford private care.

[Anonymous]

My father has parkinsons. Since he is still mentally sharp, I highly recommend you make sure your parents' estaet work is in order. Wills, trusts if desirable, health care power of attorney, HIPAA releases, and financial power of attorney. Do it NOW if you have not already.

[Anonymous]

Anonymous wrote:My father died in almost perfect health otherwise, but with Parkinson's. He could no longer swallow and wasted away, but was totally sharp until the end. His medications were stool softeners and the typical Parkinson's meds.

I'm so sorry for your loss, PP. Thank you for posting. Would you mind sharing at what age your father was diagnosed and at what age he died?

[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 so very sorry OP.
Your dad will not just “get better.”Parkinson’s has its own dementia diagnosis and what you need to understand is that his is a dying brain, not a growing brain. The progression can be delayed by various things, but he will not just bounce back and regain functions or speech or clarity that was lost.
Sadly, most people with Parkinson’s end up falling and the fall results in exacerbated traumatic brain injury. If this happens to your dad, please try your best to remember and help your mom remember that it is not the fault of whoever was “watching” him. Walking and balance are severely affected but so is the mind. And your dad may suddenly not recall that he is unable to get up and go at will.
I saw just before this that another poster on a different thread posted about a woman named Tam Cummings. She is an amazing resource. She even gives out her personal cell to anyone who needs to talk to someone about their loved one with dementia. Get one of her books or look her up online to help understand a little bit more about what your mom and dad are facing.

[Anonymous]

Anonymous wrote:

Anonymous wrote: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.

What is hospice care providing? We had my dad in care for parkinsons for six months and after he didn't die they kicked him out of the program. Overall it seemed like a scam - they sent a nurse twice a week and a CNA twice a week who wouldn't even give him a shower. Hospice fired all his doctors so he was left with no care, no doctors, no one to prescribe his meds. It was a nightmare. Luckily we can afford private care.

I’m so sorry to hear if your nightmarish experience PP, but it does sound to me as though perhaps you may not have been properly educated about hospice before your dad entered into hospice care?
Hospice is care, but NOT medical TREATMENT. It is focused on making the patient comfortable as they are dying. It is not curative, but palliative.
So any meds (other than medications to ease pain or help with sleep) would have been discontinued. They have their own physicians who do prescribe meds, but since hospice is covered by Medicare, only certain meds are approved for coverage (again, pain meds—not treatment meds)
The hospice CNA should have assisted with bathing in some capacity, so that part doesn’t make sense.
But the reason they would have “kicked him out” of hospice is because they are only supposed to be a service for someone who is 6 months to a year from dying. Since we can’t really predict that closely, there are some who enter into hospice but if they do not continue on a steady decline, they do not remain in hospice care.
If he declines again, you can always request a new assessment for services to restart

[Anonymous]

ETA: another thing that hospice provides (again covered by Medicare) is a social worker to meet with the family, bereavement counseling after death for up to a year after the patient dies, clergy (if the family desires) who will visit weekly.
Hospice care is usually provided in the home so that a patient can die with dignity in the comfort of familiar surroundings rather than a sterile hospital setting.

[Anonymous]

Anonymous wrote:My uncle had it for years. It progressed faster once he developed cancer. Before he knew he had cancer there were more and more falls and other emergencies and he was sleeping a lot. He would have been better off in a facility that could handle it. It really did my aunt in and she declined rapidly into dementia from the stress even once they finally agreed to caregivers.

He chose not to treat the cancer and went on hospice. I visited him on hospice. He had moments of seeming totally lucid and normal and other moments where he was hallucinating all sorts of fun things (may have been the meds). He lingered on hospice for much longer than expected because people kept visiting. They told us to stop visiting once everyone got time with him so he could pass peacefully . It was time and he passed peacefully. My cousins and aunt were barely sleeping and they all ended up with covid (when covid was still scary) from the lack of sleep. I say this because it is so important for everyone to take care of themselves, take breaks, get all the help you can afford.

Unless he was in pain during this time (and he should not have been if hospice nurse was properly managing that), then I am unsure why anyone would advise loved ones to stop visiting someone at the end of their life when it is clearly bringing them joy. I am glad he was able to pass peacefully though.

[Anonymous]

Anonymous wrote: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.

NP but does insurance pay for advanced illness/palliative care at home?