Can someone advise please?

[clh71]

My mum has ALS, diagnosed a year ago. She can't move at all, and her speech has fallen off a cliff in the last month, barely understandable now. Also, we think she is experiencing lower oxygen levels as she looks heavy lidded and tired. She has refused all intervention, no PEG, no ventilation of any kind, no treatment. I understand this, although it is hard. Thing is, I don't have anyone to ask what to expect. If she is experiencing breathing troubles, how quickly will it progress? All her other symptoms have progressed really quickly once a weakness starts, so I am guessing it will be the same. And, what will happen when she can't swallow? She is already struggling to swallow, but managing a little. I am so scared that she has chosen to go painfully. What are the signs to look out for if things are getting serious? I have no-one else to ask, and I need to know how long, or just how things will happen. I don't want her to starve, or choke. It's so scary. She won't tell me anything and I have to guess what's happening because she refuses to acknowledge things. Not knowing is the scariest thing. Any insight you could give me, even if it is bad, would be greatly appreciated. Thank you.

 

[Alyoop]

Hi there, sorry about your problems. If you can copy this post and put it in the main forum eg general discussion, then it will get a flood of answers from both people with Als (PALS) and carers like yourself. Many people do not read this part.

Love ALy

 

[joelc]

I moved it to here.

Unfortunately there is no way to tell what the time frame might be. Since she is refusing a PEG or ventilation the best you can hope for is for her to have respiratory issues. That is much better than starving to death. Is she willing to use a Bipap? If she is then starving is a definite possibility.
Sorry for how direct this might sound. It is hard when everything is refused. I would strongly encourage her to get a PEG (feeding tube) and wait for respiratory issues to take her.

 

[Katie C]

If you look up CO2 buildup online you might get some of your answers. It's really not a bad way to go, all things considered. If your mom's starting to have swallowing issues, make sure you're making soft foods, puree what isn't soft enough, and thicken liquids like water. Hope this helps.

 

[Al]

I hope you won't find this upsetting as it may help.

Preparing For Approaching Death

AL.

 

[Madison1943]

Hi, all I can say is I'm just like your mother. I don't want anything that will lengthen my screwed-up life. I can't walk or even stand up and my arms are weakening. My breathing is still good unless I exert myself. Chewing is hard, but I can still swallow. I want to end the suspense and get out of here, but I don't want to just take all my pills and do it myself. Hospice is helping and know that when I can no longer swallow I will not eat anymore. But I won't just starve to death. They will give me enough morphine and ativan that I won't know what's going on. Same with breathing issues. Do they have hospice where you live? If they do, try to get them involved. They won't urge you to prod your mother into a feeding tube or bipap. Good luck and don't worry.
Carol

 

[clh71]

Thank you all so much for your replies. Especially you, Carol. It is extremely touching that you would take the trouble to explain this to me, from your perspective, and I am deeply humbled by your honesty and strength. And it has helped, the unknown is often more scary than the reality. Your imagination runs wild with terrible images that torture you. But, if you have a clearer idea of what to expect, no matter how terrible, you can prepare for it as best you can. Carol, I wish you and your family peace x

 

[clh71]

Hi Al. Thank you for that. I nursed my mother-in-law through cancer 18 months ago, she was at home with us, so all of that is pretty familiar to me, unfortunately. It's not the last day or two that worries me, as I know that the body will take over and she will not be distressed. It's the couple of months before that that worries me. It's not the death that scares me, it's the dying - if that makes sense? PEG, Bipap, all out of the question for her. She wants this on her own terms, defiant, stubborn, absolutely beautiful. I am scared, but I am my mother's daughter. I am strong and I will take her on this last trip together.