Reply to talk to me about late stage Parkinsons

Forum Index » Eldercare

Reply to "talk to me about late stage Parkinsons"

Subject:

Emoticons





More smilies

Text Color: Font: Close Marks

[quote=Anonymous][quote=Anonymous][quote=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. [/quote]

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.[/quote]

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[/quote]

Options

	Disable HTML in this message
	Disable BB Code in this message
	Disable smilies in this message

Review message

Search Recent Topics Hottest Topics