Lost my mom

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Motherofthree

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I lost my mom 3 weeks ago. She was dignosed with genetic ALS - C9 in January 2019. It’s been a long road and she was very miserable the last couple of years. Everything was stripped from her and she was scared and in pain. About 9 weeks ago she slid off of a bed while getting cleaned and broke her leg. She was in tough shape before that but as soon as that happened things progressed quickly.

She started wearing the bipap all day and got moved to a hospice facility because my dad was having trouble doing it all himself and she was really struggling. She couldnt talk and could type in the beginning but she couldn’t really communicate her last couple of weeks. She was fighting morphine or really any medication but she was always crying or just in pain. My dad lived at the hospice place with her for those 5 weeks and I slept there 2 nights a week. It was just the two of us and it was so hard. She finally agreed to taking a small dose of morphine and we upped it and then it kept on getting upped and I don’t think she would of wanted that but she was in so much pain and we didn’t know what to do.

I have so much sadness and guilt. My dad thinks she died angry with us. My dad and I were holding her and watched her last breaths and I am just so heartbroken. I keep myself busy and then something reminds me of her and I feel like I can’t breathe. Her journey with ALS has been awful and is everyone’s and I just wish we could put an end to this awful disease. Thank you for reading this, I know you all are some of the only people that will truly understand what I’m going through.
 

affected

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I'm so sorry, not just for your loss, but for the pain your mum went through. As if ALS isn't enough.
I hope you can really talk this through with someone as I don't want you to take that guilt forwards into life with you. ALS is the worst thief in this world, and now that it has taken your beautiful mum, don't let it take your future.
We all deal with a load of PTSD after our PALS dies, and getting help to work through it can make a huge difference.
I am a different person since I went through my time as a CALS and since losing my Chris. I can only wish you much peace but it takes time and a lot of grieving. Talk here as often as you need.
 

lgelb

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I'm very sorry. Don't think for a moment that she was angry when she died. She knew you both only wanted the best for her, far from fear and pain. You may not think you knew what she wanted, or it may have been hard for the two of you to verbalize and discuss it in the moment under so much stress, but you will come to see that you did right by her. As Tillie says, if it takes counseling or just a lot of conversations with someone you trust to see and really feel that, make that investment in your future -- your mom would want that for you.

We all wish for an end to the suffering this disease causes, and there are always opportunities to raise awareness, direct resources to productive avenues, and advocate for P/CALS.

Best,
Laurie
 

Mary2

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I am sorry for you and your family about the loss of your Mom. She is at peace and may you have peace as well.
 

Bleue

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Alexandria
I am so sorry for your loss. There’s no way your mom was angry with you all when she passed. I’m sure she was angry at the disease. My mom was. It’s insidious and we will never understand what they went through to lose every part of themself little by little. PTSD as a CAL is real. You are so in the moment during, pivoting at every new challenge, you almost can’t think of anything outside of being a CAL. When you lose your PAL, you start to look back and start doubting yourself and asking if you did enough, or missed something, or should have said something, or done more, or whatever. Talking to a great friend or family member, or even a counselor, or support group, will help you realize that everything you went thru, all that your feel - we all feel like that. It’s makes us a member of this sucky club. Hopefully the anger will make us warriors in this fight to end this insidious disease.
 

ARCG

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1/2015
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So sorry for your loss. I second what Bleue said. The second guessing happens accompanied with guilt and talking with someone will help you see it from an objective prospective. both pals and calls get frustrated, but they are really frustrated with this awful disease, not each other. What you are feeling now is common. Hope you can find peace going forward that you did the best you could in impossible circumstances.
 
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