Decline Question

[jab1222]

Hi
My Mother was diagnosed with bulbar onset ALS summer 2012. She is currently almost completely paralyzed (some hand and arm movement), on bipap 24/7, has peg tube, in bed at all times due to sitting up it hurts to breath (with bipap), on Hospice.

She is on anxiety medications and some pain medicine (not morphine yet, seems comfortable without it so far). We have amazing ladies hired to help care for her. It is getting very hard to see her in this state but we are trying to keep her in her home as comfortable as possible, no one seems to be able to give us an idea of how long she will be like this before she passes.

Anyone have experience with endstage bulbar onset ALS.

Thank you for any advice or word of wisdom.
Julie

 

[Atsugi]

Although my PALS was obviously rapidly progressing, I was still surprised how quick the end stage was. But others seem to have the opposite experience. My only advice is to continue to burn both ends of the candle: maximize her enjoyment of life every day that you can, and prepare to meet the end at anytime. Just take one day at a time and do the best you can for her. It's great to be at home instead of in an institution.

 

[jab1222]

Thanks, we are trying to surround her with loved ones and being at home has to be a comfort. Just wish as we all do that I had a crystal ball and a way to stop her suffering and decline. She has had a rapid decline in the last 3-4 weeks, limbs were working (but weak) less than a month ago and breathing even with bipap is much worse now. Very hard to see, even though she is 72 (onset of disease around age 68 and diagnosed at age 69) she was always very active and loved socializing.

 

[jab1222]

Sadly my mother passed away on March 8th, she is at peace now and no longer suffering.

 

[affected]

My sincerest condolences on your loss, she is at peace now. I hope you can all find peace quickly as you deal with the loss.

Tillie xx

 

[Jeanau]

Thank you for letting us know about your mother. I am sorry for the hurt you are feeling, but I'm so happy that your mom got to be at home and surrounded by the people who loved her. I hope to be so fortunate. God bless you as you grieve!

 

[lgelb]

Peace and strength to your family. Your mom was lucky to have you all.

 

[4tloml]

My condolences to you and your family. It must have been a comfort to your mom that you were able to keep her in her own home with all the support she needed there. Wishing you peace and comfort now.

 

[texastracy]

My prayers today include you and your family in this time of sorrow.

Tracy

 

[poppies]

Thinking of you and how you are coping ten days down the line. I hope that your sense of comfort that your Mom is at peace is overshadowing your sense of loss at her passing. Be well.

 

[sisterpain]

So sorry for your loss, thinking about you and the void your mother has left in your heart! My sister is in the same position that you described your mom to be few days ago and we are all doing the same thing, being there for her, showing love, remembering fun times and making her lough (though that has been a little hard lately). I hope god will give you strength to handle your loss, because as much as i try to imagine how it can be to lose your loved one, i still cannot grasp the true reality of it until it happens... Sending virtual hugs your way...

 

[jab1222]

Thank you all. Sisterpain, keeping you and your family in my prayers. The last few weeks were very hard for everyone in our family.

 

[sisterpain]

Jab 1222 Thank you for your prayers! We continue to struggle... last night, she had an episode of build up secretions that she could not clear and were too deep to be suctioned and a cough that could not stop. She was resistant to using morphine, but after hours going through a very panicky rough time, she finally agreed. It calmed her down eventually, but it was so stressful for all of us. It is getting hard for her to eat partly because she can't swallow and partly because she can't breathe without the bypap even for a minute.
This is a horrible disease