Mother might be nearing the end

AliCat

New member
Joined
Sep 3, 2018
Messages
8
Reason
Loved one DX
Diagnosis
08/2018
Country
US
State
MA
City
Boston
Hello all,

My mother has been living with ALS for nearly two years now. She has lost all ability to speak and only has use of the fingers on her left hand.

I got a phone call tonight from my sister that my mom had likely died. My stepfather found her slumped over while on the toilet and couldn’t find a pulse and she wasn’t breathing. Paramedics were called and they couldn’t find a pulse either. She was brought to the local hospital and they put her on bipap, and when they did that, she started to breathe again and her heartbeat returned. She does seem to be unconscious and unaware of her surroundings. A CT scan was normal but they did discover she has pneumonia. She is being transferred to Mass General.

She has a DNR so bipap is the only intervention she has. Has anyone had an experience like this with their loved one? I just don’t see where we can possibly go from here. Part of me just wants this all to be over and I feel guilty for thinking that way.

Alison
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,055
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
City
Seattle
I am very sorry, Alison, and you have nothing to feel guilty about.

If your mom did not have a pulse for more than a few minutes, she will likely not regain consciousness, and if her stated wishes do not include antibiotics, respiratory therapy treatments, nutrition, fluids, etc. during a hospital stay in the midst of pneumonia and respiratory insufficiency, your intuition that this is a one-way journey seems correct.

Especially since she has a DNR, your stepdad or whoever has her power of attorney has the option to discuss her wishes with the attending physician at MGH (or where she is now) and with all goodbyes said, ask that the BiPAP be discontinued with the help of morphine and with those who choose to be present, to ensure that her transition is peaceful. Of course, you are best guided by your past discussions with her, and by her life.

--Laurie
 

AliCat

New member
Joined
Sep 3, 2018
Messages
8
Reason
Loved one DX
Diagnosis
08/2018
Country
US
State
MA
City
Boston
Thank you! I got a little more of an update early this morning that they will be testing her to see if there is any brain activity at MGH. At the local hospital she was first brought to, they had been giving her antibiotics and nutrition because I think her DNR was originally only no invasive ventilation. That has since been changed to no life saving measures. She responds to painful stimuli but is still unconscious. The rest of her vitals are strong.

I just hope that whatever happens, happens quickly and painlessly. She deserves not to suffer anymore after what this miserable disease has done to her.
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,583
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
City
Pittsburgh
Ali you are in my thoughts. As others have said, don’t feel guilty. This disease is a beast and it is a blessing for them to gain their angel wings. However it will still hurt like hell. Major hugs to you.
 

beauty4everyone

Distinguished member
Joined
Jul 5, 2018
Messages
198
Reason
PALS
Diagnosis
04/2018
Country
US
State
GA
City
Someplace
I'm very sorry for this challenge your family is experiencing. Hold fast. Be at peace. She rests knowing you are a loving daughter. When all that could be done has been done, there is no need for guilt. If you can, talk to her, play her favorite soft music, and let her hold your hand. Reassuring her of your presence is a blessing. B.

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