Mother giving up?

[Watching Mom Go]

Hi- and Thank you for providing a resource for those of us trying to figure out this journey. My 81 yr mother was diagnosed with ALS in Dec 2014, but had symptoms for years prior to diagnosis. She is now living in an assisted care facility. In the past few weeks I have noted an apparent rapid decline. After seeing her yesterday, it seems to me she may be surrendering.
She has been in bed for 5 days- said it's not comfortable sitting in her wheelchair anymore. She was eating solid food- slowly- but her breathing is quite labored and I'm concerned about choking. She eats alone in her room- her choice.
We have another clinic appt in 2 weeks- I will discuss hospice or a personal care attendant at that time.
Anyone else have experience with a patient who stops fighting and just lets go? Honestly, I don't blame her- there is so very much more to her personal and our family history that I won't go into here, but she is exhausted, physically, mentally and emotionally.
Any suggestions on how I can help ease her transition? She has chosen to forgo intervention, other than comfort care.

 

[Atsugi]

My wife didn't exactly "give up." She had an excellent understanding of what was happening and simply accepted it. She refused all tubes (except a catheter), ensured everybody knew to let nature takes its course, and put that in writing. She told us that, when she experienced air hunger, we were to give her morphine instead of oxygen.

Sounds like you're doing it right. Just be there and grant her every wish. Hospice will provide medications to keep her comfortable.

You--or somebody--might want to get to understand how to dose morphine. If she gets to the point where she can't breathe, a proper dose of morphine will relieve any feeling of air hunger and also prevent fear or anxiety, so she can go peacefully.

 

[Watching Mom Go]

Thank you for that insight- air hunger- I cannot imagine a worse way to go... I will definitely ask about Hospice. My mother was a nurse, she is well aware of what's coming... and has put her wishes in writing.

 

[affected]

Hon this is a terminal disease. I am sure you didn't mean it consciously but saying she is giving up will be like blaming her for dying on her rather than the monster.

What are her breathing tests like, the build up of CO2?
How wasted are the muscles around her joints and how stiff are they. How often are you doing massage and ROM to help with this as the pain from the joints is very cruel in ALS.

What did her last swallowing tests show? Yes swallowing is a risk so far as choking. PALS don't actually die from choking, what normally happens is they aspirate and die from the pneumonia.

So how can you help make the last days/weeks easier for your mum and let her go knowing how much she is loved? This may be the better question?

 

[Watching Mom Go]

Of course I don't blame her for dying- however, she has a history of non-compliance with EVERYTHING, long before this beast came along. And her attempts to remain fiercely independent have caused incredible stress on all of us. She is dissolving before our eyes. She denies any pain, but I will continue asking the question.
I anticipate markedly reduced swallowing ability as well as breathing stats at her next appt.
As for making her more comfortable- if only she would let us. Any attempts to help are interpreted as interference and control. Prior to her diagnosis she was belly crawling through her home through filth and animal waste while insisting she was still perfectly capable of caring for herself.
I'm sorry she is dying in such a gruesome manner- she has a large family standing by at the ready once she allows us to help- it is not easy on any of us.

 

[Atsugi]

Sorry to hear that, Watching. Thank you for sharing it, though. ALS has done some really bad things to families.

 

[lgelb]

Watching, every PALS lets go one way or the other. If she wants this to be when, I agree w/ Mike & Tillie, just try to ascertain her wishes and based on those, engage hospice or whatever level of care is needed, including morphine if that will increase comfort, to help her passage.

Given the large family, if your conversations confirm that the end is near, you may want to begin scheduling goodbye visits if some have to travel, and separate appearances so that 1x1 time is available.

Best,
Laurie

 

[affected]

very difficult indeed

my husband had FTD and so I allowed him to make many decisions that I felt were poor in regards to his care or even at times his safety. I did this because I felt that he was terminal and it was his body and his right to have some little control, regardless of what I might feel was a better decision.

I will never know if I could have 'kept him alive longer'. Maybe I could have. But he would have felt robbed of all right to choice and would have been even more miserable than he already was. So I felt that this would have been a poor choice in itself.

But it is never easy watching the progression in any PALS. It does make the person dissolve away before your eyes.

It is probably best to approach this by asking - mum what do you want me/us to do to help. Rather than offering the solutions you see as wise. That was something I had trouble learning, but I did learn to do it. If possible I would offer what I thought were good strategies, but if he wanted something any particular way, I let him have what he wanted. He was rapid progression, and he did it the way he wanted, FTD and all. I'm not suggesting your mum has FTD, just commenting from my own experience, and how I coped internally, and how I tried to support my husband.

Now you have joined here, I hope you keep us updated and we can try and support you as your support your mum.