Battle Over

[Jane]

battle over

Hello everyone, My wonderful Sis lost her battle on May 31 at 4:15 in the morning. All the family were there with her.
It was a long battle 3 years in total but the last 8 months she was bedridden and on bi pap24/7.
Although we had battery back up for bi pap and suction machines, I was always very worried that we would be without power too long, one of those irrational fears that we sometimes can't shake.
Carol, I too prayed that she would have release from this awful disease and felt a sense of gratitude when her struggle was over.
I miss her terribly we did everything together and wonder how to go on but I have nieces and nephews who will need help and support and she would expect me to take care of them so I will.
The forum is a wonderful place to come and read, get info and feel that we are not alone in the struggles we face
Thanks for being here!
Jane

 

[dana]

Jane, I am so sorry to hear about your sister. I am glad that she is no longer suffering, but I am sure that you will miss her so very much. It sounds like you are a wonderful Aunt, and your nieces and nephews are lucky to have another great woman (other than their mom) in their lives. I bet your sister really appreciated all of her family being with her during that final stage in her life. Once again, I am so sorry for your loss. No one is ever ready when it happens. God bless you and your family and I will say a prayer for you all.
Dana

 

[Al]

Hi Jane. Thank you for letting us know of your sisters passing. Too many times we are left wondering about people that pass through here on their journey to what we hope will be a better place. Most of us will shed tears reading your post which seems strange for someone you have never met. We have a bond here that is very strong. You don't have to meet someone in person to feel their pain. Some will say with faith there is no pain but some still feel the pain. We feel your pain and hope that in time you will feel comfort as we hope that your sister has found.

 

[ladave]

Jane-

My sincere condolences. I know that, whenever my time comes, I will want my loved ones to carry on and get maximum joy out of living, and I am certain that is what your sister would want for you. Peace.

 

[Granny]

Dear Jane,
I am so sorry that you lost your dear sister, but understand that you feel relief that she is not suffering any more.
We do feel your sorrow and will pray for your family.
Hugs and prayers, Leah

 

[Al]

Jane I hope you don't mind my moving your post over to a thread by itself. I felt more would see it in it's own thread. Once again I am sorry for your loss. Al.

 

[Jane]

re moved message

Hello Al, it is fine that you moved the message. I was hesitant about a new thread. Also thank you all for your condolences. Unfortuneatly we all face this disease and its outcome. The support and comfort found here is amazing, I am grateful to all.

Jane

 

[Barbie4]

So sorry

Jane:

I am so sorry to hear your news. I am new here, and am just starting this journey with my best friend who has just been diagnosed. I just wanted to say to you, that although I do not know you, my thoughts are with you today. Al always says it best.

sincerely,

Barb

 

[Granny]

Hi Jane,
This is Leah again, just wanting to say that after I read your message this morning I went back and read some of your old posts and realized the number of great tips and encouragement you have given to us! Thank you.
You took such good care of your sister.
Take time to grieve and rest, but I hope you will come back to us again when you feel you are up to it. You are part of our family.
Hugs and prayers, Leah

 

[skode]

Jane
May you find comfort and peace that your sister is happy and healthy in her heavenly body and rejoicing with the angels.

I know for certain that we never lose the people we love, even to death. They continue to participate in every act, thought and decision we make. Their love leaves an indelible imprint in our memories. We find comfort in knowing that having shared their love has enriched our lives. Though some day we all have to part with those we love, they are not lost. We are always better for having loved. In this way, love transcends even death. To live in the hehearts we leave behind, is not to die.

 

[marlo]

Hello Jane,

Theres nothing that i can say that the others haven't already said, but i too wanted to add my condolences. I believe she is alive, just in a different place and in a "healthy body". And i am sure your right ,, to think that she would want you to help the nieces and nephews carry on.
May God be with you on your new journey to healing.

Love and Prayers
Marlo

 

[Theresa2004]

Jane, I haven't been on very much lately, but I did see your post.
I pass on my condolences to you and your family.
You have shared a lot of valuable information to those in need and been a great support to your sister.
Prayers are with you.

 

[ekoozmin]

Jane--I am sorry to hear of your loss. Please accept my condolences. May you find much strength to cope with all the adjustments you'll need to make as time goes on. My thioughts are with you during this difficult time.--Liz

 

[Ontario caregiver]

Jane

Sorry to hear about your sister, I too do not get on this site very often, but try to get in to read most of the post.

I have a few questions, you said your sister was on 24/7 on the bipap, my husband is 20 hr. per day on the bipap, did she has als in her lungs first that is where my husband had als hit his muscles first. Did she have extra pain control, my husband has severe back pain with 2 different pain pills it still does not help. He does not want to take morphine to control the pain, but I can not understand why he would not and at least be free of pain at this stage of the disease, has anyone else used the morphine or had this severe back pain, which could be skeletor muscle pain.

We were told in May at the als clinic to just go home and let it go, which was do not fight anymore and let nature take you, He has had als for 8 years, so he sure has did well with als.

The other coment was also for another posting I agree that why is their not more help, when my journey is completed caring for Gary I will be a voice for this disease to write and phone and complain for more homecare and financial help the caregivers need. In reality most want to die at home saving the health care system lots of dollars not being used in hospital care, so why can't they relieve the caregiver with some financial help in unemployment ins./ and extending the care leave to one full year with your job quaranted like we have for pregnacy leaves. This is my future voice but right now I really only have time for caring for my husband and keeping my health up to survive this jouney as I am so burnt out wiith this part of the journey.

I have vented again but must go to help with Gary, will be reading updates when I have time and I wish all als survivors and their caregivers all the best.

 

[Jane]

pain control and bi pap use

Hi Ontario Caregiver, Sis first had symptoms in her arm (right), and it then progressed to legs then other arm and finally speech, swallowing, and lastly breathing. She did have pain but it was controled with meds. ( gabapentin, extra strength tylenol, codiene) but also used meds to help with shortness of breath ( lorazepam and versed) both worked and helped her through the S.O.B. episodes.
There are other very effective meds. besides morphine, I hope your Husband can find one that will help him.
We also found that massage helped a great deal. Sis would sleep like a baby after one.
I too will continue to work for ALS in my area,with the hope that one day we can beat this terrible, terrible disease.
Hope this answers your questions, Jane