hopealive
Active member
- Joined
- Sep 22, 2006
- Messages
- 93
- Reason
- Lost a loved one
- Country
- US
- State
- OR
- City
- Albany
Hello All,
I am not even sure why I am writing this, I just need to get it all out I think.
When your mother is diagnosed with ALS, if you are like me, you greive, you grieve for days, months, years.
You grieve every single loss. Loss of her speech, loss of her abililty to swallow, loss of her ability to kiss, loss of her ability to raise her arms above her head, loss of her ability to hold her first grandchild, loss of her ability to move her arms or hands at all, loss of her ability to hold her head up, loss of her ability to ring a bell so we can help her, loss of her ability to write, loss of her ability to point to an alphabet board, loss of her ability to breathe,so many losses over the last 3 years.
In the days after my mother's passing I honestly just felt a huge sense of relief and joy for her. We tried to make her life joyful, and comfortable, however I feel we fell short over and over again. The day before she passed I felt clearer than anything I have ever felt in my life that I was to go and just hold her hand. I held her hand for two hours. Usually I would just chatter, tell stories, try and fix things for her, on that day I just sat and held her hand.
I would give anything to hold her hand again. I know I am being selfish, she is finally at peace and is whole! She can have a drink of water now. I think the significant thing about loosing someone to this disease is... that sense of releif that comes when they pass. I thought there might be something wrong with me, in that I felt joy even. Now that it is 6 weeks later, I just feel sadness and a deep sense of loss. I am beginning to remember her before ALS, and it just isn't fair that such a beautiful and strong woman is now gone. She did nothing to deserve this, took great care of herself, cared for others, was a lovely human being. Of course I am glad the suffering is over, but WHY did she need to suffer at all.
I know we don't have any answers this side of heaven, I am just needing to put it all down.
So many of you have offered hope and encouragement throughout the journey.
I guess one thing I must say to each of you caring for a PAL is, treasure each day. They will not last forever. I feel like if I had known the end date I would have done more, held her more, just sat with her more. As you are in the day to day caring for your loved one, it just feels overwhelming at times. I know, however now..... I just cannot believe I didn't see the end was near. I was just in survival mode I suppose. Hug those PALS even if it feels like a hard conversation, tell them how sorry you are they got a raw deal. Tell them how much they mean to you, how their courage and grace inspire you to do and be all that you can be. Tell them they truly will receive their reward one day, and for goodness sake pray, pray, pray that they might be healed! Wouldn't that just be awesome.
Thanks for listening.
Love,
Holly
I am not even sure why I am writing this, I just need to get it all out I think.
When your mother is diagnosed with ALS, if you are like me, you greive, you grieve for days, months, years.
You grieve every single loss. Loss of her speech, loss of her abililty to swallow, loss of her ability to kiss, loss of her ability to raise her arms above her head, loss of her ability to hold her first grandchild, loss of her ability to move her arms or hands at all, loss of her ability to hold her head up, loss of her ability to ring a bell so we can help her, loss of her ability to write, loss of her ability to point to an alphabet board, loss of her ability to breathe,so many losses over the last 3 years.
In the days after my mother's passing I honestly just felt a huge sense of relief and joy for her. We tried to make her life joyful, and comfortable, however I feel we fell short over and over again. The day before she passed I felt clearer than anything I have ever felt in my life that I was to go and just hold her hand. I held her hand for two hours. Usually I would just chatter, tell stories, try and fix things for her, on that day I just sat and held her hand.
I would give anything to hold her hand again. I know I am being selfish, she is finally at peace and is whole! She can have a drink of water now. I think the significant thing about loosing someone to this disease is... that sense of releif that comes when they pass. I thought there might be something wrong with me, in that I felt joy even. Now that it is 6 weeks later, I just feel sadness and a deep sense of loss. I am beginning to remember her before ALS, and it just isn't fair that such a beautiful and strong woman is now gone. She did nothing to deserve this, took great care of herself, cared for others, was a lovely human being. Of course I am glad the suffering is over, but WHY did she need to suffer at all.
I know we don't have any answers this side of heaven, I am just needing to put it all down.
So many of you have offered hope and encouragement throughout the journey.
I guess one thing I must say to each of you caring for a PAL is, treasure each day. They will not last forever. I feel like if I had known the end date I would have done more, held her more, just sat with her more. As you are in the day to day caring for your loved one, it just feels overwhelming at times. I know, however now..... I just cannot believe I didn't see the end was near. I was just in survival mode I suppose. Hug those PALS even if it feels like a hard conversation, tell them how sorry you are they got a raw deal. Tell them how much they mean to you, how their courage and grace inspire you to do and be all that you can be. Tell them they truly will receive their reward one day, and for goodness sake pray, pray, pray that they might be healed! Wouldn't that just be awesome.
Thanks for listening.
Love,
Holly
