Kat's mom

[KatBee]

Hi friends,

I've been MIA for a long time, but my mom was relatively stable. A slow and steady decline, but nothing that limited her abilities much beyond where we were in the fall.

But suddenly there were some noticeable changes in the last few weeks, culminating in a huge change today. I couldn't really convince her to wake up and the way she was sleeping was not normal -- eyes open, face sunken-looking, didn't wake up easily. Eventually I got her sitting up and having some fluids and a bit of yogourt, but her speech never got strong all day. And it was fine until a few days ago. But now it's gasp-y and very sparse.

I called a nurse to come sort of on an emergency basis and he did a bunch of assessments and called mom's primary care provider and home care agency for us basically to tell them it's time to really step things up.

Until tonight mom's been able to spend nights by herself. She lives in a bachelor apartment, so it's not super feasible for me to spend nights here -- but I am tonight, obviously, now that she can't leave her bed.

She looks like she's dying. The way her face is.

But I'm feeling really out to sea here. My mom never wanted to get to this stage of the disease -- we have a legal application in the works to allow her to access physician-assisted dying. So I feel extra unprepared for what to expect now... I hadn't asked much about it because her plan was never to let the disease itself kill her... the whole idea was to spare her that, but we just couldn't make it happen in time is it going to be awful?

My husband started packing up our apartment (across the country) today, we were planning for him to finally move out here since it looked like it was going to be yet another several months -- but now I don't know what's going on. So I think he's just going to fly here asap and we'll undo the moving arrangements we've made so far... maybe? I'm just rattling things off, this is so unexpected...

Mom's primary care provider is coming on Monday. I hope he's able to give me more information. But I expect that there's not much predicting or even treatment anyone can do... just hope for an easy let-down...

Does anyone have experience with the term "30% palliative" or "30% pps" or even 'bed-bound' and can you tell me what happened from there with your pals?

 

[affected]

Re: 30% palliative

Kat, personally I had never heard that term, but a quick search I see it's some kind of rating scale.
Probably applies to other diseases.

The problem with ALS is that it is just not the same in each PALS.

Bed bound means nothing with ALS, because some PALS are bed bound a long time. Some PALS die while still being fully mobile.

I was recently talking a CALS elsewhere who had similar happen, and after 3 days the PALS came to and was responsive again.

I'm not trying to confuse or give hope, I'm so sorry it is like this. ALS is so unpredictable.

What are they saying - were they more precise than 'it's time to step things up'?
Step what up?

Have you asked your mum what she wants right now in the situation that is happening, when she is a little awake, or is she unable to think clearly enough to express?

My Chris had an incredibly peaceful passing, at home with just me. I gave him palliative care as he declined rapidly in his last 4 days. He was aware of the day and time of day, but he was well medicated and had no fear or pain. It does not have to be awful, many past CALS have attested to this. If you can give her a lot of love, and keep her comfortable, and IF she is actively dying, it can be very peaceful.

I'm sorry I can't directly answer your questions fully because of the nature of this disease, but I hope it kind of tells you some things as you work with your mum and her medical team and make decisions.

 

[Atsugi]

Re: 30% palliative

Yes, at PPS of 30% palliative means totally bed bound, unable to do any activity--extensive disease--total care required--drowsy and confused, but nutrition intake may still be OK. When she can only take sips, that would be 20%.

I don't know your PALS situation. I can tell you mine, so you can compare.

My PALS had an incredibly fast progression, so it might be different than your case. Plus, my PALS refused all tubes except a cath to pee. In the last week, she couldn't speak, and only blinked while I held up a letter board.

Her urine turned dark and dirty, nearly chunky. Her organs were shutting down. She refused either air or oxygen, preferring morphine to stave off the physical and emotional effects of air hunger. A few days before she died, her breathing was very, very soft, so I guess her diaphragm muscles were gone. Then one morning her eyes locked up and no further communication was possible. I applied eye drops continuously.

I made sure to clean up her bedding and I cut a nice nightgown so that I could put it on her without moving her, and I washed her hair. I called family to come over. That evening, her heart stopped. She was surrounded by her sisters and brother, with her daughter and husband holding her hand. I used a stethoscope, and found her chest was unbelievably quiet, no sounds at all. Then I call the funeral home and they took her within the hour. It was all very dignified.

Ask the doc lots of questions. You should have morphine (and Atavan?) in the fridge.

But as I said, my PALS case was unusually fast.

ADDED: When the face changes radically, perhaps it is the muscles losing muscles tone, for being paralyzed.

 

[KatBee]

Re: 30% palliative

Dear Mike and Tillie,

You will not believe what has happened. I'm not sure I believe what happened.

I was literally in the middle of responding on this forum when I noticed that my mom's shallow breathing had completely stopped.

She just faded right out. She literally just died. And it was quiet and peaceful as you said. But so much faster than I at all could have expected. This is insane. I feel like I'm living in a weird new-age film. I can't believe this is happening. I already called the nurse to record her death and my friend to keep me company and the funeral home to take my mom's body. And now I'm sitting in a 24 hour diner because I couldn't imagine going to sleep.

Thank you both for helping me through the worst night of my life (so far). This is the only part of what I had written before that still matters:

Dear Mike and Tillie,

Thank you for sharing your stories with me <3 It is reassuring to hear, especially given that I didn't read much on end-stage ALS because of my mom's wishes.

It's lovely to hear of the gestures of caring and thoughtfulness that you both were able to provide for your loved ones, and that it can be peaceful.

 

[affected]

Re: 30% palliative

Oh Kat, all I can say is that a peaceful death is all any of us can hope for ALS or not.

And your mum had that. She did not suffer, she just slipped away. And you were with her, and you loved her right through the whole thing.

I hope you can draw peace from knowing that you were there for her, and you were constantly holding up what she would want. This is not always as easy at it sounds, and many struggle with what they want, which is for the person not to die.

It was sudden, but you know, your mum did not want to live a long slow progression, being aware of every loss taking her bit by bit. So she has finished with the torment of the monster ALS. We all wish ALS did not exist at all.

Much peace to you, I hope your partner arrives soon so you can be held and comforted. Don't worry about what is the right thing just now, if a diner feels the right place to be, just do whatever you need. Wish I could hug you xxx

 

[Jlynn]

Re: 30% palliative

Tillie and Mike,

I read quietly on this forum every day and several times a day. I will not go into my story as this is Kats show but I just had to say that I hope you two are still here when things get rolling for my brother as you are both an amazing wealth of information that only a person who has been through this can be. I get all of my questions right from this forum and ask questions at clinic appointments. Thank you and please don't leave me! Kat, I'm sorry for your loss but thankful for all that it was peaceful. It's what we all pray for.

 

[gooseberry]

Re: 30% palliative

Oh Kat, I am sorry about your mom. But she didnt want to reach this point so maybe she went on her own terms, she simply stopped fighting. So very glad she is at peace and flying free. Hugs for you. Steph

 

[Nikki J]

Re: 30% palliative

I am so sorry but happy it was peaceful. My mother also passed very suddenly at the end so I can relate a bit. I believe our mothers picked their time and your mom now flies free. Peace and comfort to you

 

[pittsburghgal]

Re: 30% palliative

Kat, I am so sorry for the loss of your mother. I understand the shock you feel since she passed so quickly but I am happy that she died so peacefully and is now free. I am happy that you were with her and I am sure she was, too. You and your family are in my thoughts and prayers.

Sharon

 

[Margesmn]

Re: 30% palliative

I'm so sorry for your loss. I hope you can find solace and peace in the coming days. I'm sure your mom was grateful for all of the care you provided her.

 

[Atsugi]

Re: 30% palliative

KatBee, I'm sorry for your loss, and glad your mother's suffering is ended.

 

[ShiftKicker]

Re: 30% palliative

Kat, I'm sorry for the loss of your mum. So very sudden for you to try to wrap your head around. My condolences.

 

[KatBee]

Re: 30% palliative

Thank you everyone for your kind words. Your support has meant a lot to me through this time. <3

 

[Loverly]

Re: 30% palliative

It always seems a surprise.
I'm sorry for the pain of it all, but glad that she passed without drama.
Love from across the miles,
Jennifer

 

[Nuts]

Re: 30% palliative

Oh Kat, what a shock. I'm sorry that you've lost your mom, but grateful that her passing was so peaceful

Hugs.
Becky