Moving to Long Term Care?

daughterofALSpa

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Joined
May 31, 2019
Messages
2
Reason
Loved one DX
Hello--this is my first time posting on this forum. My dad was originally diagnosed with PLS about 15 years ago; 2 years ago, the diagnosis was changed to ALS. He is wheelchair bound and needs assistance with all aspects of daily living. He has a catheter and needs food pureed. It's very hard to understand him when he speaks. He also seems to be having memory issues and has become very belligerent (which he was before he was sick as well).

He has multiple aides who currently come to the house; someone is there through the whole day except between 11pm-7am. However, after all these years, my mother is exhausted, and we are looking at moving my dad out of the house.

We were told to look at skilled nursing, but it's really expensive, and we feel that much of the rehabilitative services they offer wouldn't be relevant to my dad, as we'd like him to be treated more like a hospice patient at this point (he keeps saying he just wants to die). He also does not want any assistive devices (i.e. a feeding tube) should he need one. So we've also looked at assisted living and memory care, but I'm worried that his physical limitations are more than what most people in those facilities have.

Has anyone moved a loved one out of the home? If so, where have they moved them and do you have any advice about choosing a facility? Many thanks.
 

Nikki J

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Joined
Mar 22, 2012
Messages
7,576
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I am sorry you are facing this decision. Are you in the US? It is helpful to you and us to fill in the geographic information as these things vary by location. Someone may even know your area!

Assuming US it sounds as if he is way beyond assisted living in his needs. The nursing homes here ( Massachusetts) usually have an acute rehab floor and another skilled floor for people with chronic high medical needs. They also usually have a unit for people with high care needs and less skilled needs. The latter is somewhat less expensive

I know someone who moved to a nursing home after her needs became more than her family could handle. She had no behavioral issues to complicate things and no feeding tube at the time but it was a nursing home not assisted living

It is expensive and a hard decision but people do it. You can have hospice as a nursing home resident just as you could at home
 

ReginaS

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Nov 20, 2018
Messages
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Lost a loved one
Diagnosis
02/2018
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State
LL
In our town there is a hospice house where someone can receive hospice care if they cannot be at home for some reason. A bed needs to be available and the numbers of beds are limited.

These kind of places might know of other places but they are probably hard to find or to get into.

Best of luck with this situation. It sounds very challenging for all involved. My pALS ALS is going fast. We were told he is in his last week's of life. I had a father w. a MND that lasted his whole life until he died in his late 70s. My mother took care of him. Our family life was shaped quite a bit by my father's disease.
 

daughterofALSpa

New member
Joined
May 31, 2019
Messages
2
Reason
Loved one DX
Thank you both for your insights. Yes, it's definitely very challenging emotionally for all involved. I hope we can find a place for him that will work because it's too much for my mom (she needs a number of joints replaced and has put off replacing them because there's no one else to be with my dad). Prayers for you both and your loved ones.
 

ReginaS

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Joined
Nov 20, 2018
Messages
147
Reason
Lost a loved one
Diagnosis
02/2018
Country
US
State
LL
All the best to you too, your mother and father. If you want to let us know how it is going. This is a good place. I have found much support here - often just by reading how others are doing.
 

lgelb

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Nov 5, 2009
Messages
7,511
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Lost a loved one
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09/2009
Country
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State
WA
To search for a good SNF (nursing home), you can use the Medicare comparison site. Your state should have a site as well, to pick up ones that may not be Medicare-certified.

You might also find an adult family home (smaller, less expensive than SNFs) that can deal with an immobile patient because some late-stage Alzheimer's patients essentially fall into this category. Your state will have a list of those as well, and there is word-of-mouth, referrals from doctors/hospitals, even Yelp. In our state, many have signs on the lawn or driveway, so you might see one nearby.

However, if he really wants to die and has or can put his wishes in writing relative to the quality of life he wishes to accept or not, I would ask him if he would in fact prefer to be in a hospice program, which can be delivered anywhere. If you start with finding a hospice he/you click with (you would interview them), if there is more than one in your area, they can recommend a setting for his final days. Then the services they provide will be paid by Medicare, assuming he has that. You will still have the expense for the facility, but perhaps in a more comfortable situation for all concerned.

Best,
Laurie
 

Lkaibel

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Joined
May 9, 2016
Messages
1,281
Reason
Lost a loved one
Diagnosis
06/2016
Country
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State
MN
Expense wise with long term care, there can be sone Medicare options depending on your parent’s assets, etc. If cash runs out to pay for LTC, Medicare/Medicaid will pay and lien the family home, but your mom would get to live in it until she passes. This may not be your parents financial situation at all, but I mention it because Nursing Home Care is crazy expensive and people run out of cash quickly.

It sounds though like your dad is getting closer to the end and making choices to hasten that, a scenario I am very familiar with so cost issues may not look so large regardless. I sympathize with your mom. No way could I have done homecare with my late husband if he’d been angry and belligerent. The last week or so of his (aware) life when he was that was hard enough.
 
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