Ready to move my dad with Parkinson's to a facility - need help

[Anonymous]

It's becoming clear that my mom can no longer care for my dad who has Parkinson's at home. They have a full time caregiver, but their home is small and dad is no longer ambulatory at all and it is becoming too much. What are next steps for Parkinson's patients? What kind of facility should we look for? My mom is stressed and is having a hard time with this decision, so I want to start researching and visiting places myself (MD). We are heartbroken to have to move him, especially because he is still eating well and could live with his condition for a while longer (he is 86).

[Anonymous]

Op, as you may know, he will not qualify for "Assisted Living" from what you've described. I wish I had something to offer. Mostly wanted to bump this thread, and hope you get some help.

[Anonymous]

Unfortunately, budget is going to be the major factor here. Does your dad have cognitive and memory symptoms as well, or just physical? You mention he is eating well, how is he doing with other daily activities, particularly bathing and toileting?

I’m so sorry, it’s a horrible disease.

[Anonymous]

Op, I’m so sorry.

If he has mobility issues, maybe it would make more sense to have your mother move to an apartment/condo that is accessible for people with mobility issues? Then he could still live with your family but be in an environment he can be cared for - you don’t make it sound like he needs lots of medical needs. That might be less expensive than paying for full-time nursing care, and your mother can still coordinate his care.

[Anonymous]

Anonymous wrote:Op, I’m so sorry.

If he has mobility issues, maybe it would make more sense to have your mother move to an apartment/condo that is accessible for people with mobility issues? Then he could still live with your family but be in an environment he can be cared for - you don’t make it sound like he needs lots of medical needs. That might be less expensive than paying for full-time nursing care, and your mother can still coordinate his care.

She said he's not ambulatory, which probably means he can't move around on his own at all, which means 24/7 care and a lot of assistance with toileting and bathing.

[Anonymous]

I’m so sorry for you. I recently lost my brother to PD and he lived at home with wonderful caregivers. But they didn’t have nursing skills so they didn’t see or realize the sudden medical problem that he had and he couldn’t communicate it. He was much younger than your Dad which is so sad. I’d reach out to a PD organizations such as the Michael J. Fox group for good advice.

[Anonymous]

I;m not sure why the PP said that OP's dad is not a candidate for assisted living. It may not be the right choice, but plenty of people in those places have Parkinson's and many are not ambulatory.

Another option is for your mom and dad to move to a one-level apartment in an elevator building and continue to have an aide.

Do you want him to qualify for Medicaid? Do you think he will live more than five more years? if so, talk to a lawyer.

[Anonymous]

Thanks, all. He basically cannot do any functions on his own other than feed himself, messily. He can sit in a chair but needs to be continually repositioned. He does not speak much, though once in a while he will smile when we joke with him.

It's heartbreaking and compounded so much by my mom's sadness and resentment as she tries to decide how to proceed. They would probably need to sell their house in order to move to an apartment or to put my dad in an expensive facility.

Has anyone worked with a geriatric care manager? This sounds like maybe someone who could help us go through options.

[Anonymous]

Anonymous wrote:Thanks, all. He basically cannot do any functions on his own other than feed himself, messily. He can sit in a chair but needs to be continually repositioned. He does not speak much, though once in a while he will smile when we joke with him.

It's heartbreaking and compounded so much by my mom's sadness and resentment as she tries to decide how to proceed. They would probably need to sell their house in order to move to an apartment or to put my dad in an expensive facility.

Has anyone worked with a geriatric care manager? This sounds like maybe someone who could help us go through options.

Be prepared for things to progress very rapidly at this point. With my dad, we were in the process of trying to find a nursing home when he got a UTI and was hospitalized. He was discharged to in-home hospice and died about a month later. PD is a terrible disease. Your options are pretty limited: a) private health aides 24/7, which is crazy expensive, b) nursing/memory care facility, but depending on your needs this might not make sense because you might need to still pay for an aide if he needs eyes on him at all times, c) skilled nursing facility, which is one step down from a hospital and super expensive (way more than a standard nursing home). And unless you have he right long term care insurance or are destitute and qualify for Medicaid, Medicare covers none of this.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Thanks, all. He basically cannot do any functions on his own other than feed himself, messily. He can sit in a chair but needs to be continually repositioned. He does not speak much, though once in a while he will smile when we joke with him.

It's heartbreaking and compounded so much by my mom's sadness and resentment as she tries to decide how to proceed. They would probably need to sell their house in order to move to an apartment or to put my dad in an expensive facility.

Has anyone worked with a geriatric care manager? This sounds like maybe someone who could help us go through options.

Be prepared for things to progress very rapidly at this point. With my dad, we were in the process of trying to find a nursing home when he got a UTI and was hospitalized. He was discharged to in-home hospice and died about a month later. PD is a terrible disease. Your options are pretty limited: a) private health aides 24/7, which is crazy expensive, b) nursing/memory care facility, but depending on your needs this might not make sense because you might need to still pay for an aide if he needs eyes on him at all times, c) skilled nursing facility, which is one step down from a hospital and super expensive (way more than a standard nursing home). And unless you have he right long term care insurance or are destitute and qualify for Medicaid, Medicare covers none of this.

Plus one to all of this.

I had a different experience with my dad, but same end result and what PP says about options are correct.

[Anonymous]

OP , so sorry to hear about your Dad’s situation. We have gone through this with a family member with Parkinson’s disease and one with dementia. We dreaded the thought of them being in large institutional settings; we knew they would deteriorate more quickly no matter how much time we spent with them. We were able to find small private assisted living facilities that gave excellent care in a home like environment. The cost was much less than in a corporate facility and our relatives were very well cared for. They didn’t have a lot of special events and scheduled activities, but they did more informal activities. I think we got the listing from the county office of aging. A geriatric case manager is also a wonderful idea, although I don’t know of any in the area to recommend.

[Anonymous]

To the PP, can you give examples of such facilities?

[Anonymous]

Anonymous wrote:To the PP, can you give examples of such facilities?

Sure, here’s one example:

https://www.kenwoodcare.com/dayton-assisted-living-facility-glen-hill.php

[Anonymous]

Anonymous wrote:

Anonymous wrote:To the PP, can you give examples of such facilities?

Sure, here’s one example:

https://www.kenwoodcare.com/dayton-assisted-living-facility-glen-hill.php

I’m the PP whose parent already passed from Parkinson’s but this is an interesting alternative for OP to look into if her mom is not wanting to keep her father at home. Can you share what the cost was for you and what level of care it covers? One thing to consider (along lines of what PP said), especially if your parent has PD related or other dementia or hallucinations is that changing their surroundings to something unfamiliar can be very disruptive for them. I think this is partially why my father went so rapidly downhill after his hospitalization. But your mom has to do what is also in her best interest. Being the primary caregiver is physically and emotionally draining, and you need to be mindful of her physical and mental health as well. Best of luck to you.

[Anonymous]

Anonymous wrote:OP , so sorry to hear about your Dad’s situation. We have gone through this with a family member with Parkinson’s disease and one with dementia. We dreaded the thought of them being in large institutional settings; we knew they would deteriorate more quickly no matter how much time we spent with them. We were able to find small private assisted living facilities that gave excellent care in a home like environment. The cost was much less than in a corporate facility and our relatives were very well cared for. They didn’t have a lot of special events and scheduled activities, but they did more informal activities. I think we got the listing from the county office of aging. A geriatric case manager is also a wonderful idea, although I don’t know of any in the area to recommend.

These are called "residential care homes" (I'm sure there are other names as well) for anyone interested in learning more about them. My guess is there are fewer in the DC area because land prices are expensive and our housing stock is not ideal (not as many ranch style homes).