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Kathy's mom

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Katalin

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Sep 22, 2018
Messages
114
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Lost a loved one
Diagnosis
05/2018
Country
CA
State
Ontario
We were never able to get to clinic to get things checked out: she was really weak, and they offered to send a respiratory therapist to her home, so we didn't need to go. They eventually recommended Ativan, sublingual, but we didn't have a chance to use it often.

She was mostly able to relax her way out of it, and occassionally used a little thing I put together for her, which was a stick pen, with the ink tube pulled out, and she'd breathe through the narrow end of it. I put yellow tape on it so it was highly visible and she was able to grab that and inhale through it. It seemed to work, but she was resistant also to doing much when she had them.

She passed away two days ago after a really hard struggle with breathing, almost completely unable to swallow and her speech was almost unintelligible. She died at home and I was by her side, madly trying to get the right palliative meds into her, and only in the final hour was she finally comfortable.

I wish I'd thought of the baclofen to tell the palliative team, instead I only remembered the Ativan type meds. They didn't control her laryngospasms well. They're not that common. I regret that, but I know I couldn't think of everything. People, get palliative involved early. We could have made her passing so much easier if we had...instead, we had a mixup with the physician and the referral didn't go through fast enough. She just declined so very fast.

She's at peace now. I'll need a break from all this, so thank you ALL from the bottom of my heart for your help and hand-holding and good kindness. I'll never forget you all!
 
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KarenNWendyn

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2,335
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Such a hard journey you went through with your mom. But you showed her so much love and devotion during that time. You gave her outstanding care. Such a horrible disease.

She is at peace now. I wish you strength and comfort.
 

lgelb

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Nov 5, 2009
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7,517
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09/2009
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I am sorry to hear this, Kathy. She was so fortunate to have you at her side, then and always. Try not to be haunted by the last few days. She knew what she meant to you.

Best,
Laurie
 

affected

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Joined
Apr 26, 2013
Messages
11,768
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
So very sorry for your loss Kathy xxx
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
718
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
Oh Kathy, I'm so sorry you lost your mom. Don't regret how things were or ran, it's just too much to get it all right and you did great.
I also had to walk away from the forum for some time. I spent more time with friends talking, I was outside, I made up for the last crazy weeks. Peace to your family and thank you for being there for her!
 

Jlynn

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Joined
Mar 16, 2016
Messages
386
Reason
Lost a loved one
Diagnosis
12/2015
Country
US
State
NH
Kathy, I'm so very sorry for your loss and the pain that you and your Mom had to go through. This beast is kind to No one. Take care of yourself. Jlynn
 

chally

Very helpful member
Joined
Apr 23, 2015
Messages
1,255
Reason
PALS
Diagnosis
02/2015
Country
US
State
wv.
She is at peace now, you took great care of her!
 

Nikki J

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Joined
Mar 22, 2012
Messages
7,577
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I am very sorry. As said above she was very lucky to have such a loving and amazing caregiver
 

KimT

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Nov 18, 2014
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3,345
Reason
PALS
Diagnosis
08/2015
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You mom is at peace. You were with her during her transition. That's what matters.

Live well. I'm so sorry for your loss.
 

pittsburghgal

Distinguished member
Joined
Jan 7, 2016
Messages
493
Reason
CALS
Diagnosis
11/2011
Country
US
State
PA
Kathy, I am so sorry for your loss of your Mom. Your love and concern for her was evident in every one of your posts. I hope you find comfort knowing that she is free now and that you did all you could to try to help her.

You are in my thoughts and prayers.

Sharon
 

Wilson2009

Distinguished member
Joined
May 4, 2017
Messages
159
Reason
PALS
Diagnosis
01/2017
Country
US
State
KS
So sorry for your loss. Our thoughts are with you and your family.
 

Narrowminded

Very helpful member
Joined
Apr 30, 2016
Messages
2,469
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
Kathy I am so very sorry for your loss. You were an amazing caregiver. You Mom knew you loved her and did everything possible for her. Never doubt that for even 1 second. Know I’m praying for you and your family for peace and comfort.

Hugs
 

JimInVA

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Joined
May 29, 2014
Messages
775
Reason
CALS
Diagnosis
04/2014
Country
US
State
VA
I am so very sorry for your loss. She was fortunate for your loving care. Your Mom is comfortable now and I'm sure she will want the same for you. Go find your peace.



My best...


Jim
 

[email protected]

Distinguished member
Joined
Jan 3, 2016
Messages
212
Reason
PALS
Diagnosis
11/2015
Country
US
State
Iowa
My condolences for your loss. You did exactly what a loving caregiver can do. Peace.

Ed
 

Katalin

Distinguished member
Joined
Sep 22, 2018
Messages
114
Reason
Lost a loved one
Diagnosis
05/2018
Country
CA
State
Ontario
Oh my goodness, thank-you all so much for your kind words. They are truly consoling to me, you have no idea. What a lovely group of people you all are. We're blessed to have this community to support each other. It would have been so lonely without it, and thanks for reassuring me that I couldn't have done more. I still wish there was more I could have done, but I know I couldn't have. I did the best I could. My best and only thing I could say that I learned, that was so important, is get palliative involved as soon as you even remotely think you need it. It would have been so much better to have their support earlier than during a crisis.

Big hug to you all on this journey, PALS, CALS, and people who have lost their loved ones. Big hug.

Kathy
 
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