End Stage Symptoms + Care facility

[Kgoss]

Hey Everyone!
This is my first post- Please bear with me if I post in the wrong group or this is already discussed.

My mom has bulbar onset ALS, she was diagnosed late 2020. Between then and now, my dad quit his job to care for her, my parents sold their home, moved a state away, into my home with my husband, 2 little boys and I so we could help care for them.

I don't believe she ever accepted her diagnosis, and for a variety of reasons, she no DNR in place, no end of life plans, nothing in paper. When she could speak, she would fight viciously when we tried to discuss plans or what she wanted. She refused to use most interventions that were given to her, such as bipaps, Cpap, PT, OT, and has resisted most machines/adaptive aids/ care, and refuses to communicate. Because of this, she now has symptoms of permanent damage from lack of oxygen.

Where she is now: cannot speak, can use a writing board but won't.. prefers DIY sign language. What she does write is often nonsensical. She cannot walk, adjust herself in any way, wipe, and attempts to hit, scratch, and throw herself down when my dad gives her a shower. This weekend, she threatened to threw herself on the floor if we repositioned her to relieve her bed sores.

She has a feeding tube, which she uses well. Insomnia, bed sores, hemorrhoids, she has lots of difficulties to manage. This weekend, she's asked me twice about where her dad is ( He's been dead for over 20 years) and clarified several times she meant her dad. She writes that she thinks she hears his voice.

She uses oxygen 24/7, on a variety of over the counter meds, and Rilozole.

Tomorrow, 2 of my siblings are flying in to discuss a care facility for mom... I guess the point of this post is, I would love direction here...?

1) Did anybody else have a similar experience that led to outside care?
2) how the heck is the best way to bring that up? My dad and I have had brief conversations about it, but I think he's holding on to the hope that she'll pass away at home. He's exhausted from her care every 30 mins, and every hour at night. Poor man, he tries so hard... but her care is very overwhelming, since she's so combative and resistant. At this point he's started falling and tripping from exhaustion.
3) did anyone experience a better quality of life after moving their PALS to outside care?
4) does this sound end stage and we should just ride it out?

Thanks so much, I appreciate any input..!

 

[affected]

I'm so sorry you are in this very difficult situation.
Is she behaving towards all this in a way that is very like her pre-ALS personality? Or would you say she seems like a different person in her behaviour?
There is a particular kind of dementia that often goes with ALS, and it is possible she is experiencing this and so her behaviour could (I'm only speculating and asking) be the result of her brain deteriorating the way you can see her body deteriorating.

You will need a specialised facility to deal with her complex needs if you were to place her somewhere. Not all facilities would be set up to deal with non-verbal ALS patients.

Have you considered moving to a palliative situation and talking to the hospice facilities in your area for help?

O2 is likely to make her behaviour worse as ALS patients experience a build up of CO2 rather than a lack of O2 for the most part. Giving O2 often means they build up more CO2 which will exacerbate confusion, irritation and the like.

A hospice may be able to help you provide care for her with meds and some assistance for some of the care tasks and more peaceful passing for her?

Not all hospice are equal, and there can be in-home help and facility placement, and they all operate a little differently, so it could be worth making a list of all that are in your area and working out what you want from a facility or help at home, and start speaking to each of them so see if any might meet your needs?

 

[lgelb]

I'm sorry to hear about your mom. If your family can afford a facility, I guess I would be thinking about bring in a care aide to help your dad so that she could die at your home, since she is pretty disoriented (oxygen without BiPAP can do that, in addition to anything else) and moving again would probably make that worse.

On the other hand, if her doctor is willing to write an order for hospice and there is a suitable facility or agency in your area, that would be a more economical option since Medicare pays for it. However, their response would probably be in terms of sedation and likely that would accelerate her end of life since her breathing cannot be adequately supported by oxygen.

Has she had any recent assessment of her breathing? That would inform your question about where she is in terms of prognosis.

Is she on any psychoactive drugs (used for depression, anxiety, psychosis)? What are the OTC drugs she is on? What was her personality before the ALS?

Best,
Laurie

 

[Bleue]

My mom is nearly the same as yours except she has no signs of confusion just total apathy. To everything. Just doesn’t care or want anything that would make her life or my caring for her easier. I think when it progresses fast (diag April 2021) and they are so strong, they fight fight fight then become apathetic. Good luck in your search for a facility. I’d definitely look into in home help and hospice-i’m actually doing that now.

 

[affected]

I am not sure I would think of the next stage of care in terms of accelerating her end of life, as her quality of life seems low, and that of your dad and family is at least as low.
If you can get some clear professional direction on how to really provide her the most peaceful way of living now, regardless of how long that will be, you may all find more peace.
Palliative care, whether by a hospice facility or assistance in home can bring enormous comfort to everyone.
I hope you come back and read the responses here and let us know how you are doing with the other family arriving, so we can support you. We will always make suggestions only here, then support you in the choices you feel are best for your situation.