Any way to know when the end is nearing?

[robbandbec]

My mother was diagnosed a little over two years ago. She has deteriorated quite rapidly here lately, getting to where my father and I cannot understand her a lot of the time, mobility is nearly zero, but most notably, eating practically nothing. She has been around 600 calories/day for a few months, and has been doing more like 200/day the last week or two. No feeding tube. I am wondering how this may time out. I am really starting to struggle emotionally with the reality of losing my mother. Is there any way to know how long this nutrition level can be sustained?

 

[Nighthawk]

Hi,

I am so sorry about your mother but at the same time I am glad you found this forum where many excellent people (PALS and CALS alike) are willing to help you and your mother in this difficult journey.

Well, based on what you posted I take it your mother has Bulbar problems derived from ALS.
Bulbar problems affect the muscles of her face, the muscles for chewing, the muscles for swallowing and the tongue itself. That's why you and your father have problems trying to understand what she wants to tell you both.

As the muscles for swallowing get weaker, it becomes difficult for her to swallow solid food and, even more difficult to swallow liquids (water and thin liquids is the most problematic).

Now, may I respectfully ask you why didn't she get the PEG-tube? Was it because she didn't want to get it or something else?

Second question: After her ALS diagnosis was made, did she attend to the ALS Clinic regularly?
The ALS Clinic is necessary because there is a team of ALS experts (PT, OT, Speech Pathologist, Pulmonologist, Nurses, etc.) who work there and can monitor your mother and asses her needs based on what they observe when she attends to her appointments there.

There was (or is) a "window" to get the PEG-tube and it's based on the numbers of her FVC, which are determined by her Pulmonologist at the ALS Clinic. That's why is so important for Caregivers and PALS to attend their appointments at the Clinic.


Ultimately, I don't really know what to tell you. No one can really predict how long your mother is going to live, only God. However, the level of calorie intake she has right now is motive of serious concern.
Couldn't you call the people at the ALS Clinic and try to setup an appointment as soon as possible? If you can do it (and I am hopping you can) tell them what is going on and what advice/measures they can suggest you for you to help your mother in this difficult situation for all of you.

Look, I sincerely wish I could be more helpful to you or offer you a better advice/solution.
Let's hope other forum members (CALS and PALS) see this thread and can offer you better solutions and advice than I have.

Take care.


NH

 

[grahamalex61]

Of course, as you probably have been told, every case is unique. This is a low intake, but it is amazing how the body can sustain itself. What was her weight and how much has she lost over time? I was making a lots of vegetable soups, which I would feed to my PALS. He could still swallow cereals and muffins for breakfast. I know it is obvious, but what have nurses/doctors indicated about her weight and kilojule (calorie) intake? This is a difficult time for you, of course. My partner, passed on April, exactly two years from first signs. Whenever it happens, it will be difficult, but what you want is for her to be as comfortable as possible. Has the doctor suggested IV for hydrating and nutritional support? What about hospice care if it is nearing the end? My thoughts go out to you at this time! Graham

 

[Katie C]

Is your mom receiving hospice care? She certainly should be eligible for it at this point, and the hospice staff would be better able to answer many of your questions.

 

[lgelb]

Rob or Bec,
I think it is more how she is feeling than how long she has to live.
Is she comfortable? Is she suffering? What are her wishes? How can you address them? Those are the questions I would focus on.
With a caloric intake that is leading her away from you, I think you will ultimately feel better about her passing if it is on her terms.

 

[Barbie]

Is she unable to eat? is she not eating on purpose? is she ready to go? if she wants to live--you have to get more calories in her. starving to death is not fast or pleasant. Have you talked to her doc? Hospice should definitely be involved at this point. I am so sorry your family is dealing with this.

B