last stage

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Shelleypatricia

New member
Joined
Nov 26, 2013
Messages
9
Reason
Loved one DX
Diagnosis
09/2013
Country
CA
State
b.c
City
Chilliwack
My mum was diagnosed with ALS in September 2013, the bulbar kind. She has since refused a feeding tube and is currently around 75 lbs (from 130). She is wasting away before our eyes. I wonder how low can a person weight be before their organs shut down. I pray that she will just fall asleep and not wake up but I don't think that is very realistic. I don't want her to suffer and she is ready to go. Any idea how long she can do this for?
thanks
shelley
 
If she can drink, Sandy is making me 3 kinds which I try to get down at least twice a day, all blended/liquidified:

1. 28 oz. of whole chocolate milk with a banana and two tablespoons of either peanut butter or Nuetella = 700 cals
2. 16 oz. of her gazpacho soup, no cals, but plenty of fiber and other good stuff
3. 16 oz. fruit smoothie = 300 cals

so that gets 2,000 cals per day plus we try to supplement it with something else but usually choking fears keep me from trying

hope this helps, as to little cals made me slow witted (slower than usual :), grumpy, and tired/weak. After 6 weeks on the pity pot, I decided to try again with encouragement from this forum ...

Kind regards,

Max

BTW, I am 62, I had to give up food in February, and my weight is now holding.
 
Thanks Max,
My mum is swallowing very little. only resource and thickened juice but she feels that somethings are just rolling around in her mouth and coming back out again. She is 79 and getting frail as we speak. We try to blend meals but she is not having the most success swallowing. I worry about when she can't swallow at all.
 
have you called you ALS or MDA local resources? There a lot of Canadians on this forum, so perhaps they can direct you. This is a very hard time and only you/she will feel what is right. Perhaps clergy?
 
Prayers are with you at this difficult stage. Thinking of you.

Debbie
 
I'm so sorry for this situation, watching this happening is so terribly heart wrenching.

I think you need to get palliative care/hospice team involved immediately. This will do 2 things:
1. take the burden off you having the support of a medical team trained to assist in the last stages of life
2. make you mum truly comfortable as possible and give a high chance she will pass peacefully

Please know that many PALS pass very peacefully with the palliative support.

Hugs to you in this hard time
 
thank you so much for all the kind words. We will have to meet the palliative team very soon. Your support is such a comfort at this sad time.
 
Shelley, it's not at all unrealistic that your mother might just fall asleep and not wake up. How is her cognition? Does she have an appetite, but simply can't swallow well, or has her appetite diminished so she really doesn't want much? Diminishing appetite is natural part of the dying process, and is usually indicative that the body is starting to shut down. As it does, the blood chemistry changes, which, among other things, will begin to affect her cognition. This is perfectly normal. It often happens that the decline is gradual, and that the patient begins sleeping more and more. Eventually, the patient falls asleep for the last time.

Your mother's weight is very low, and my guess is that she is near the end, especially if her appetite is very low. A common phenomenon very near the end is a spurt of energy and renewed appetite, but this is very transient. There is much hospice literature which gives a lot of information of what to expect throughout the dying process. Your hospice will probably give you some booklets about it. You can also find it online by searching such things as "dying process", or similar phrases.

I wish you much strength and comfort as you care for your precious mum.

-Phil
 
ShelleyPatricia.. I am also in the Fraser Valley. Would love to connect!
 
Annie's Phil said:
Shelley, it's not at all unrealistic that your mother might just fall asleep and not wake up. How is her cognition? Does she have an appetite, but simply can't swallow well, or has her appetite diminished so she really doesn't want much? Diminishing appetite is natural part of the dying process, and is usually indicative that the body is starting to shut down. As it does, the blood chemistry changes, which, among other things, will begin to affect her cognition. This is perfectly normal. It often happens that the decline is gradual, and that the patient begins sleeping more and more. Eventually, the patient falls asleep for the last time.

Your mother's weight is very low, and my guess is that she is near the end, especially if her appetite is very low. A common phenomenon very near the end is a spurt of energy and renewed appetite, but this is very transient. There is much hospice literature which gives a lot of information of what to expect throughout the dying process. Your hospice will probably give you some booklets about it. You can also find it online by searching such things as "dying process", or similar phrases.

I wish you much strength and comfort as you care for your precious mum.

-Phil
Click to expand...
that helps more than you know Phil. My mum tries to eat but she really doesn't have much of an appetite. I believe I will contact the palliative care team on Monday and get them to come out. I know she doesn't have much of an appetite and has started sleeping more. It is such a comfort knowing that other people have experienced what we are going through. You don't feel quite so alone and it makes it a little bit more doable.
thank you for your thoughts.
 
ValleyMomma said:
ShelleyPatricia.. I am also in the Fraser Valley. Would love to connect!
Click to expand...
I am fb Shelley Wautier ale I am not sure how to send a private message but i can message you with my phone number or e mail too.
 
You are dealing with an extremely trying time shelleypatricia. We too are in the Lower Mainland and have used the Health Authority Palliative team for a long time. their experience with ALS was limited, however as we move closer to the end of this journey their knowledge and help with end-of-life has been invaluable. Hope you do bring them into your situation, for their expertise may bring some of the comfort that you seek for your beloved mother.
 
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