Susan_AU_08
Member
- Joined
- Jan 18, 2008
- Messages
- 10
- Reason
- Loved one DX
- Country
- AU
- State
- Victoria
- City
- Melbourne
Dear Ordinary Girl,
Your words echoed my own thoughts not so long ago, I was so exhausted I thought I would die on my feet.. but can I please share something with you.. when they're gone they're gone forever.
What you are experiencing may well be the hardest thing you'll ever do in your life but it will end, and you will be here with your thoughts. She's not testing your patience, you're tired. I used to tell my mother I loved her every day, I never wanted her to go, not ever, but at the end I did want it to be over.. there's a difference.
She never wanted to be a prisoner in her own body and I never wanted to be a nurse, but I loved my mother and she loved me and we did our best in our new roles together. It wasn't a rosy path, it was a scary crash course in learning new things and working harder only to see her continually decline. It was frustrating in so many ways and we felt deprived of so many things, but we had our moments, she giggled when the syringe popped out of the feeding tube because I didn't push it in far enough, and sprayed us both with formula, she laughed at the bruises on my legs from walking into all the equipment, she would touch my hand, or poke me if I looked sad... I'd return this favour by tickling her... sometimes I'd threaten to get her drunk by pouring alcohol into her peg (I never would - neither of us drank alcohol, but the idea made us both laugh), sometimes she would kick me when I never saw it coming and I'd remind her I could have her locked up for that as child abuse is an offence, she'd look at me with a cheeky expression... even when the time came when I could no longer understand what she was saying, we never stopped communicating.
Three days before she died looked at me, pointed to her herself, drew a love heart in the air and then pointed at me with her atrophied hand.. she told me she loved me, no notepad, no speech, but with more meaning than words. These are the memories I cherish if I have to remember anything of those dark times, and everything else I remember is the time before diagnosis, so ilgal, if you are reading this, please don't ever feel you are a burden, the only burden is the weight of having your loved one suffer from an illness with no cure, it is never, ever your loved one themself.
I wish all PALS and their CALS many of these small moments in time to help carry you through the days ahead.
Your words echoed my own thoughts not so long ago, I was so exhausted I thought I would die on my feet.. but can I please share something with you.. when they're gone they're gone forever.
What you are experiencing may well be the hardest thing you'll ever do in your life but it will end, and you will be here with your thoughts. She's not testing your patience, you're tired. I used to tell my mother I loved her every day, I never wanted her to go, not ever, but at the end I did want it to be over.. there's a difference.
She never wanted to be a prisoner in her own body and I never wanted to be a nurse, but I loved my mother and she loved me and we did our best in our new roles together. It wasn't a rosy path, it was a scary crash course in learning new things and working harder only to see her continually decline. It was frustrating in so many ways and we felt deprived of so many things, but we had our moments, she giggled when the syringe popped out of the feeding tube because I didn't push it in far enough, and sprayed us both with formula, she laughed at the bruises on my legs from walking into all the equipment, she would touch my hand, or poke me if I looked sad... I'd return this favour by tickling her... sometimes I'd threaten to get her drunk by pouring alcohol into her peg (I never would - neither of us drank alcohol, but the idea made us both laugh), sometimes she would kick me when I never saw it coming and I'd remind her I could have her locked up for that as child abuse is an offence, she'd look at me with a cheeky expression... even when the time came when I could no longer understand what she was saying, we never stopped communicating.
Three days before she died looked at me, pointed to her herself, drew a love heart in the air and then pointed at me with her atrophied hand.. she told me she loved me, no notepad, no speech, but with more meaning than words. These are the memories I cherish if I have to remember anything of those dark times, and everything else I remember is the time before diagnosis, so ilgal, if you are reading this, please don't ever feel you are a burden, the only burden is the weight of having your loved one suffer from an illness with no cure, it is never, ever your loved one themself.
I wish all PALS and their CALS many of these small moments in time to help carry you through the days ahead.
