Can I use a CPAP or BIPAP respirator by myself? How about a feeding tube?

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louflum

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I am considering entering an assisted living facility. It offers skilled nursing only 8 hours a day, so I have been told I cannot use an invasive respirator or continuous feeding tube. I don't use any respirator or feeding tube now but expect to need one or both later. Likely I will need a bipap or cpap and maybe a non-continuous feeding tube. Can I work those devices myself after hours? I really like this facility.
 

Nikki J

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Maybe. It would depend on your capabilities at the time. You need some degree of hand arm strength and dexterity. If they will help with a non continuous feeding tube that shouldn’t be an issue anyway. Bipap is considered non invasive but if there are unattended hours you would need to be able to at least adjust your mask. A bigger issue though is eventually you will need more help than assisted living usually provides
 

louflum

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Thanks for your reply. I would consider being taken off a respirator and ending my life when I can do so. After that point is the more help you are referring to? I hope to stay in the assisted living until I die. Does that sound realistic to you, or should I consider a nursing home?
 

Nikki J

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You could be still able to breathe and be completely paralyzed requiring help with everything. Assisted living won’t remotely do that. And there are lots of stages before then that any assisted living I have seen would not do. Everyone’s pattern is different. If your breathing is affected early and goes fast you wouldn’t need as much help ( though when your breathing is bad you can’t do very much due to profound fatigue ) as someone with limb involvement that progresses a lot before breathing. For most of us assisted living doesn’t work for long
 

ReginaS

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You would need to be prepared to hire additional help. I have a friend in assisted living and yesterday I saw an ad on TV for that facility. The ad is nowhere close to what things are really like there when I go and visit which it pretty much every day or every other day. (She does not have ALS). The staff is supposed to check in on her several times a day - depending on level of care - but when someone brings a coffee and says good morning that already counts for a check-in. Occasionally I go in and she sits in front of her dinner and does not have a fork. The staff that I know is really nice to me and to her but they are understaffed and it is hard work. The staff has not much time for any extras.
My partner considered moving into assisted living and really was much better taken care of at home. But also, I was there, friends visited often.
It really depends on your situation. If you go, be prepared for that you might need to hire 24 hour care at some point. It will depend on the hospice people if they follow your wishes in the end or not. Even if you set everything up the way you want to there could be a staff change and you cannot know for sure what will happen.
Do you have someone with PoA who can reliably watch over the situation?
These are just my thoughts. I have seen good care in the facility where my friend is and also hair raising stuff.
In any case, I wish you all the best with your decision. If you read here you will find stories of people and you will find much information. All the best to you.
 

lgelb

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Very few PALS would do well with occasional AL check-ins, let alone that when you will need to get some phlegm out or adjust your mask is not predictable. Hand function is rarely fully preserved past when you would have BiPAP and feeding needs.

Assisted living, as Regina noted, is about a series of focused visits, generally not less often care on demand except in emergencies. In particular, they are rarely set up for any significant overnight assistance.

That said, often a skilled nursing facility is not ideal, either, for some of the same reasons and because ALS is often beyond what they are equipped for.

There are always exceptions, but it is also true that management or staffing changes could upset any workable scenario.

Not knowing your situation, is it possible that you could hire help to assist you in your home?
 

ReginaS

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There are some hospice houses that take people with ALS where one most likely would get adequate care but that's more for the end stages. It would be worth inquiring though and ask specifically about any medical equipment that you would like to use - i.e. if they support that.
I will give you some examples of what I learned over the past years of rather typical situations in AL:
I have a combined situation of assisted living (highest care level) and hospice care for my friend. (Hospice has gone on for over a year or 2 and gets renewed periodically). I have hired outside help in the past but that was not really a success. Once hospice is involved it seems to me that it is not necessarily in addition to what I pay for assisted living care - hospice gives baths and AL stopped doing it. They don't substitute what they not longer do with anything extra in a different area...like for example taking my friend outside on a porch for 30 min. She would love that. Though it is generally more work to get someone in a wheelchair to the dining hall than if they walk there themselves. It's also more work to put my friend to bed. Sometimes they put her to bed around 8PM. She is a night owl.

Also, if my friend goes to the dining hall she will be seated a different room - a room, no windows, where they put people who have more trouble eating because of their age and frail bodies... most of them are over 90.
The facility is supposedly one of the best in town. I know a nurse who took her mother out of the facility and back into her home because the care was not adequate. They were very happy with the facility as long as she needed no care. I also know a therapist specializing in elder care who took her mother out of that facility bc her mother needed her food cut so that she could eat and swallow and the staff was not able to do it despite assuring the family several times that they would. There is little to no help with AV or electronic items. Many PALS need that. Recently someone stopped me in the hallway because she needed help w. her Alexa. She could not reach her son and vice versa. These are just a few examples and they do not seem to be rare events. My 2 friends had the luxury to be able to check on their mothers often otherwise they would have never found out.
When I toured the facility we were not shown the nursing units, the apartments with barely any sunlight, the memory center, the first floor which is actually the basement. I would have needed the experience that I gained later to ask for more questions and even then.... I guess that's how it is.

At first I got upset at what I perceived a lack of care and the rather high monthly bills that were more predictable than the care. Over the years I got used to it and think that the nurses and aids and other staff really do what they can. If it's your only option it is certainly better than nothing. If you are considering this step because you are hesitant to be dependent on family members .... It can be a gift to let others take care of you - for both sides. Of course that depends on the situation.
 
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