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ddpreds

New member
Joined
Feb 13, 2008
Messages
5
Reason
CALS
Diagnosis
09/2006
Country
US
State
TN
City
Nashville
For quite a while I have been "lurking" here, reading things people post so I could try and understand what my Mom was going through.
She first starting coughing a lot in 2005. Diagnosed with the "possibility" of ALS in 2006. And officially diagnosed in early 2007.
Her speech was the first thing to go. I haven't heard her voice in two and a half years.
She did really well for a while. An occasional fall. Luckily never hurting herself.
Things started going down hill fast the middle of April. She was addmitted into the hospital with bronchitis, and an infection. That seemed to really speed things up.
I lived at home with her to take care of her and work too, but I finally had to break down and ask for help.
My sister was of no help, so I had to go to one of my aunts.
Hospice was coming at this point, but only the nurse for two or three times a week.
The end of May, I more less started staying at home to help her and be there.
Sunday, May 31, I had a bad feeling. I stayed up all night just to watch over her. At 3AM, I saw her move so I knew she was awake. I went into the living room where her hospital bed was set up and ask her if she was okay.
I knew I needed to say things then. I told her I loved her and she patted me on the back. I knew she was worrying about me being there by myself, so I told her not to worry, I would be fine.
(Glad this is not paper 'cause I can't hold the tears.)
Monday was a very bad day. She was so aggitated the morphine and ativan were doing nothing.
I called the hospice nurse and we got 24 hour nurse care starting that night.
Tuesday, she was somewhat responsive the first half of the day, but then, nothing. Wednesday morning, after I talked to her and told her she could let go and go to a better place, she never woke up again.
I still can't sleep through the night, thinking I will hear the wireless door bell I bought for her to let me know she needs me.
I miss her something terrible, but I know she is in a much better place, with my dad, not having to worry about PEG tubs, morphine, ativan, hospice nurses or me.

Thank you all for your information, your kind hearts toward other people and my God bless all of you and help you through each and every day.

The ALS Walk is being held here in Nashville, Saturday, September 19th and I am walking in her honor.
 
Please accept my condolences on the loss of your Mother. I hope you soon find peace & comfort. Doing something positive, like participating in the ALS Walk in her honor, is a step in the right direction
 
ddpreds, I am very sorry about your mom, please accept my condolences. I also want to thank you for relating your mom's story. We all have our trials to go through with this disease and I am glad that your mom had your love and support when she needed it the most. Now it is time to take care of yourself so I hope that you can carry on with your life and remember the good times that you had together. Thank you for your support of the ALS society, I know that your mom would be very proud of you.

Barry
 
I am still reeling from losing my mother in June. I know exactly what you went through and I know that it was a bittersweet ending. I hope you and your family pull together to get through finding your new kind of normal. May you find peace knowing she is no longer suffereing.
 
sometimes i think the care taker has a harder time letting go of things that had to be done while alive along with the what else could of i have of done. the what ifs and did i do enought weigh heavy on our minds but as a mother i can assure she knows you did all you could and was glad you were there for her so rest your mind and move on as she would want that for you. put the bell away and remember her with love and a smile of the memories
 
ddpreds, my heart goes out to you for the loss of your mother.
May she rest now free from this disease and may you find joy and comfort in your memories.
My deepest sympathy.
Dana
 
I'm very sorry you lost your Mom. It is so wonderful that you were able to be with her and I'm sure she is now with you in spirit.

Good luck to you...
 
What a wonderful daughter you were to her,may you both find peace.
 
I am sorry for the loss of your mother but thank you for sharing your story.

AL.
 
am so sorry for your loss, my father died in June. i was at home this weekend and my mum accidently set off our wireless doorbell she had for dad, and we all froze! was very odd

sending hugs and prayers x
 
I am so sorry for the loss of your mom...my mom was diagnosed May 09 and we are just starting to learn about this disease. I only hope that I can be as strong as you have been. Good luck in the walk and I wish all the best for you.

Thinking of you
Kim
 
My mom was diagnosed in May '09 and has gone from breathing fine (she had limb onset) in May to being on the bi-pap18+hrs a day and not able to walk. The wonderful people at the clinic we go to have offered so many answers to our family, but we are still trying to prepare ourselves for what we know is coming sooner than later (the docs say it is rapid progression ALS). She is my best friend, and I am overwhelmed by the thought of not talking to her everyday, but know know that she will finally be at peace. She has battled a rare bone cancer that recurred 3 times in the last 7 years, and finally we were thinking she won. We were wrong. I think that by doing and saying everything you could in the time you had was the best. I am trying to do that now, spending every moment I can with her.

I'm so sorry for your loss.
 
So sorry for your loss. Hopefully you will start to forget how she was at the end and remember her as she was before she got sick. Slowly your life should get back to normal. She wouldn't want you to be worrying about what you could of done. Just being there with her would of made her happy.
Colleen
 
My mom was diagnosed in May '09 and has gone from breathing fine (she had limb onset) in May to being on the bi-pap18+hrs a day and not able to walk. The wonderful people at the clinic we go to have offered so many answers to our family, but we are still trying to prepare ourselves for what we know is coming sooner than later (the docs say it is rapid progression ALS). She is my best friend, and I am overwhelmed by the thought of not talking to her everyday, but know know that she will finally be at peace. She has battled a rare bone cancer that recurred 3 times in the last 7 years, and finally we were thinking she won. We were wrong. I think that by doing and saying everything you could in the time you had was the best. I am trying to do that now, spending every moment I can with her.

I'm so sorry for your loss.


We know in our heads what will come, we know in our hearts that they will be better off, not suffering, we think in our heads we can prepare, just know that when the time comes for her to go home, shock will come to you. You can never be prepared for that time, but I wish for you and your family that God will be with you and comfort you during this time.

I wish this for everyone going through this and the ones that have gone through this. And don't be afraid to say whatever is in your heart. I didn't get that chance with my dad when he passed away, and that hurts me every day.
 
I am so sorry for the loss of your mom...my mom was diagnosed May 09 and we are just starting to learn about this disease. I only hope that I can be as strong as you have been. Good luck in the walk and I wish all the best for you.

Thinking of you
Kim

I learned a lot from reading post from people on this site. Things to expect, what's happening when things start progressing, etc..
You find strength just by knowing she needs you, she loves you, and she took care of you when you needed her.
I know you will do your best and she will know that too.
 
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