To stay or to go...

[Erika]

Hello,
So my mom has been in Mexico for a couple of weeks now. It has been quite a readjusting time for both my dad and her. Last time she was there(Dec), she could still go up and down stairs. Now, she's sleeping in her living-room turned bedroom and is able to only walk a few steps before being too winded. Her trunk muscles have weakened also. So she's on her recliner or wheelchair most of the time now. She has deteriorated quite a bit in this short time, but continues to use her bipap only sometimes. She also recently told my sister she doesn't want a feeding tube and can't make up her mind on the breathing tube.

There are days when she just wants to come back, but then she has told my sister she would like to stay and feels good to have the company of visitors. I thought she'd be to embarrassed or tired to receive guests, because she has done that in the past, so knowing that she is letting others in is awesome. She is just afraid of needing an ambulance or emergency medical help and not gett it due to the traffic there is where they are. She's also afraid she won't get the same medical attention that she would get here.

My question is, what kind of medical emergencies would require us to call 911? I feel so dumb asking this, but I just don't know what to expect. Is there something we can do while medical help arrives? I'd like to know because if she wants to stay , I'd hate to have her here and miserable. We want to try to calm those fears and do whatever if there is more we can do. I wish I could be there as she meets with new doctors who'll take care of her while there. I miss her.

-Erika

 

[lgelb]

Erika,
The leading reasons she would need emergency care are:

1) A fall. The solution: don't fall. Only supervised transfers. If she does fall, minimizing bleeding and stabilizing any sprains/fractures, and keeping her still (unless she is bleeding from her mouth or in respiratory distress) while awaiting the ambulance are 3 things they could do.

2) Choking on food or liquid. Sounds like not a concern yet, but will be at some point if she needs a feeding tube and doesn't get it. Possible aids: suction machine and learning how to help her with assisted coughs, and adjusting her diet as she goes.

3) Respiratory insufficiency. If she is not going to be trached, and has access to BiPAP, the answer is making sure someone who knows how to start/adjust the machine is nearby.

There should be a talk if she is going to stay there, about what intervention she wants and doesn't, like if she wants to be intubated if she has a respiratory crisis. Google "advance directive" or "five wishes" form for examples of questions to discuss. And she should have paperwork that is valid there, for health care power of attorney.

Best,
Laurie

 

[Barbie]

in the entire 9 years my husband fought ALS, only had to call 911 once when he choked on food. that was early on and he recovered before the paramedics arrived.

hospitals are not really a good place for pals in my opinion. we did everything possible to keep him out since he got better care and attention at home. one stay in 9 years and that was respiratory related. I agree with Laurie's summary.

 

[Erika]

Thank you Laurie and Barbie.

As of right now I'm the one who's on her power of attorney paperwork, but that's here. Also, she doesn't really talk about her "wishes". It's so overwhelming to her. I'm hoping if we keep bringing it up differently ,maybe she'll be a bit desensitized to the subject, as someone else wrote. All we know for now is, she doesn't want a feeding tube.
Also, we're trying to figure if her memory is being affected as well. I've mentioned some symptoms that I had posted on another thread to her neurologists. He wants to go over some brains scans she had done at the beginning of this year and will evaluate her on her clinic day in January. That's when she's supposed to return, but her crap has been acting up too. She can't get her breathing to go without machine and we can't find someone to take a look at it.
Laurie if I sent you the settings, do you think we can figure it out? If read a few other threads and downloaded the manual for it but I can't figure it out.

 

[lgelb]

Erika,
Of course, I will PM you my e-mail [done]

--Laurie

 

[Atsugi]

FWIW, Barbie is absolutely correct, and I want to emphasize it.

The problem with medical professionals is that they always exude confidence, even when they have no clue. Very dangerous when dealing with ALS.

We went to the ER several times when her breathing was obstructed and we were away from home. I virtually chained myself to her, and wouldn't let a nurse or doctor come between us--like I was an overprotective shepherd dog.

My attitude has always been: If the staph doesn't get you, the staff will.

 

[Aussiemndcarer]

Yes totally agree. We avoid hospital . It's not on our radar. We are lucky here in our part of Australia, we have a neurological nurse visit our home every two weeks. She liaises with our GP doctor and our community care nurses who also visit every other week. All this is free of charge. We live 18 Km's away from the local hospital and one hour from where the neurological nurse is based. Early on we had home visits from an occupational therapist who measured up and made our home suitable for a wheel chair. They even altered the bathroom to make showering work. Too many sick people in hospital! We don't want to catch their bugs!

 

[Nuts]

Erika, I know that you want to take the best care of your mom that you can, and for you to be that involved you need her here.

What she may need, however, is a large number of friends and family who will continue to visit and support her. Are there more there? Will she have more visitors? Will her days be happier if she is surrounded by more freinds and family (not forgetting that you may have to work or be caring for a family of your own). Sweetie, quality of life is as important, if not more important, than length of life at this point.

You've heard from some of the most experienced among us about the common reasons for a 911 call. I'm with those who say the best thing you can do is keep her out of the hospital if at all possible. As your mom's condition progresses, you will find that those who care for her everyday become specialists in HER care--no medical team not familiar with AL:S and/or her will have that advantage.

Here's something that I didn't expect to happen with my husband--he is much less private than he used to be. He loves company, and is increasingly less and less concerned about what people "see" or think.

Big hugs...this is not easy.

Becky

 

[Erika]

Yes! From everything I've read so far and from other experiences, that's the last place we want to be! But should there be a need, we want to be as prepared and as informed as possible. Thank you all for your input!

 

[Erika]

Erika, I know that you want to take the best care of your mom that you can, and for you to be that involved you need her here.

What she may need, however, is a large number of friends and family who will continue to visit and support her. Are there more there? Will she have more visitors? Will her days be happier if she is surrounded by more freinds and family (not forgetting that you may have to work or be caring for a family of your own). Sweetie, quality of life is as important, if not more important, than length of life at this point.

You've heard from some of the most experienced among us about the common reasons for a 911 call. I'm with those who say the best thing you can do is keep her out of the hospital if at all possible. As your mom's condition progresses, you will find that those who care for her everyday become specialists in HER care--no medical team not familiar with AL:S and/or her will have that advantage.

Here's something that I didn't expect to happen with my husband--he is much less private than he used to be. He loves company, and is increasingly less and less concerned about what people "see" or think.

Big hugs...this is not easy.

Becky

Hi Becky,

Yes, she does has more visitors there. She was really struggling in the beginning and wanted to come back everyday up until about a week ago. We talked and reminded her that she just needed time to adjust. So far she seems to be turning a corner.Even though she has deteriorated a bit and her memory, decision making and focus abilities are a bit of, (That's why we want to have her experience both sides of the border in case we can't get any feed back from her) her mood is better, now only snapping at my dad (poor thing ). Her skin and overall appearance seems better.


I know if she decides to stay it will really suck for us on this side, but I will be here supporting her 100% finding out ways to make her life easier there and flying down as often and for as long as I can. She's just so scared though...So while she decides I want to provide her with a "plan of action" to her worst case scenarios and hopefully calm some of her fears to this horrible disease.

And you're totally right, we find ourselves rushing to cram as much info down busy doctors' throats, only to get quick impersonal answers a lot of the time. My sister and I are little by little specializing in our own areas in which we will better help my mom. for now though, we will take a big breath and call it a night.

Thank you!
-Erika