Planning the road ahead

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KarstBoy

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My wife is in the early stages of bulbar onset ALS so we are trying to get ahead of the ball by planning for eventualities. One of the items on the list is the eventual need for a facility that can handle the intense physical care needed toward the end.

I've contacted a couple of nearby Assisted Living places and found out that if a feeding tube is involved, they can not accommodate ALS patients. They say a registered nurse is required for doing the feeding in case something goes wrong.

Q: Is there a particular kind of facility that is more suited to ALS patients?
Q: Does anyone know of a place in the DFW area of Texas that specializes in ALS Care?
 

lgelb

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I'm not sure why you are presuming she needs to leave home at the end? Most PALS do not.

The short answer is that there are no ALS-specific facilities in your area, and we will have difficulty identifying any that are a better option for her than your home. Assisted living does not support the level of care that you describe. Skilled nursing facilities would be on a cash pay basis since Medicare does not recognize end of life as a need for that level of care, and they are not set up for ALS.

However, you will have access to hospice agency help, which does assist with some "physical care" at home via Medicare, if you so choose, when she is in the final phase. The general rule is that a doctor will write that order when you and they recognize that phase.
 

KarstBoy

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Thanks for the reply Igelb.

I want my wife to be at home with me in comfortable surroundings as long as possible but at some point, due to the poor physical shape of my 74 yo shoulders (4 rotator cuff operations, 3 of which were unsuccessful), I just assumed I'd have to find some place to take her when she needs 24 hour, intense physical help (for instance when/if she is totally paralyzed). When needed, I'll have someone help me during the day for as long as possible, but after that, when 24 hour help is required , it's a question mark for me.

At any rate, we're still only a month out from the final diagnosis so we've got a lot to learn about what to expect. We've yet to get an appointment scheduled for the OT & others on our Neuro-team. Takes forever to get any medically related appointment these days. We'll have a clearer picture of what to expect and what questions to ask after we've talked to these folks.

Thanks for the info on hospice.
 

lgelb

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Watch a video on YouTube about using a Hoyer lift with a divided leg sling. That's one of the most physical things you would do. You should never have to lift her weight without a power assist.

The need for some kind of help at night once a PALS is settled in bed is usually more on the order of needing a drink, an itch scratched, a sheet adjusted, or a mask adjustment, than to be lifted, just as most people without ALS do not have to get out of bed at night. So the effort at night is generally less physical than during the day. Making sure you both get enough sleep is important, but it can be done by systematically addressing whatever is inhibiting sound sleep (something facilities typically, sadly, don't have the staff to do).

It's early days, as you say, so I don't want to overwhelm you, but my expectation would be that she will find it best by her criteria -- which are the ones that matter most in this -- to stay with you. So I would start with that premise and see how far you can go.
 
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nona

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I know from working with nursing homes professionally and from my own level of care needs that a nursing home would be inappropriate and intolerable. I live alone and have a variety of family, friends, and paid caregivers who help me about ten hours a day. I am alone overnight. The power lift has been critical for the people who can no longer lift me, including my stepmother who is 68 years old.
 
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