View Full Version : 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
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
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
06-05-2006, 02:05 AM
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
06-05-2006, 06:38 AM
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
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.
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
06-05-2006, 05:20 PM
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
06-05-2006, 05:31 PM
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
06-07-2006, 05:45 PM
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
06-07-2006, 10:30 PM
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
06-08-2006, 08:21 PM
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
06-08-2006, 09:01 PM
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
06-10-2006, 05:56 PM
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.
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
Ontario caregiver, my heart goes out to you, I understand completely how you feel and I agree with you one hundred percent. I too at this point am very burnt out, I am not complaining I am just tired right out from the worry and fear and the lack of support. I think it is disgraceful to tell family to go home and let go, that is awful. Where is the compassion and the hope. Hope is very much needed to keep going. You said something that is also very true, what about us we need the help to help our loved ones. We have a heart that beats, we are not machines, I again am not complaining, I just do not understand the way they handle this disease at all.
Sandy.
Barbie4
06-11-2006, 07:44 PM
Dear Ontario Caregiver and Sandy:
I am not even close to being in your position yet. I can only imagine what you both must be feeling. I am so sorry that you are both burnt out and not getting the help you require. Have you reached out to the March of Dimes? I have a friend there and she says they help ALS patients. Again, I really don't know what the future holds, but I can tell you this. I am determined to start now and continue finding ways to help ALS Canada or Ontario be able to give more to ALS patients and their caregivers. I agree that there should be financial help (E.I. insurance etc.) for the caregivers. Unfortunately, I do not know at this point exactly what is needed as I am so new at this. Send me a private message and outline your wish lists on what you need now or what you have needed in the past. If you could make any changes in what services are offered, what would they be? I am going to attend a meeting and maybe I could bring some of your issues up.
Stay as strong as you can.
Barb
gecc4
06-12-2006, 08:24 PM
Sorry about your sister Jane. My thoughts and prayers are with you.
I was having difficulty starting a new thread so I thought I would post this message here.
I got an email from Jennifer's husband Kevin (from Markham) informing me that Jennifer had passed away on April 24th. (She had just turned 52)
Jennifer was on the forum for a short time but unfortunatley the disease progressed and she was no longer able to join us. I am not sure how many of you remember Jennifer but I thought I would inform you all.
May she now rest in peace. Anne
Ontario caregiver
04-25-2007, 03:36 PM
Sorry to hear about your sister, she is now in a calm place and away from this terrible disease.
Our thought are with you and all your family.
CindyM
04-25-2007, 05:10 PM
Thank you Anne for telling us about Jennifer. From time to time we become close to someone and then when they don't post for a time people start to worry. It is really considerate for friends and family to let us know what happened. Everyone wants to send warm thoughts to the family and often we are unable to do that.
If you have contact with Kevin please tell him that he is in our thoughts and we extend condolences for the loss of his wife. Cindy
Hi Anne. I do remember Jennifer from her first couple of posts. She wasn't here long which is very sad. Tell her husband our thoughts are with him and thanks for letting us know.
AL.
