grahamalex61
Member
- Joined
- Apr 6, 2013
- Messages
- 12
- Reason
- Lost a loved one
- Country
- AUS
- State
- NSW
- City
- Sydney
My life partner of over 13 years, Michel, passed away on Friday, April 5, 2013.
His first symptoms showed two years ago. His case was one of the most aggressive his neurologist had seen. But through it all, he was brave and strong and proud. We spent the last 6 months enjoying life, the summer here in Sydney, and doing as much as possible. I took him out nearly every day, to the beach, to cafes, to restaurants, to the park (where I would run pushing his wheelchair, push it hard, let it go and watch him speed around the track swaying from side to side, free) , downtown...I did everything possible for him. But sometimes I didn't want to go out because I was exhausted. He never tired from going out...it gave him life.
The days were good, the nights a nightmare, waking constantly to turn him, sit him, give him something to drink, reassuring him, re-positioning him, cry with him. You all know what it is like. We had lines in the sand when he knew he had enough; he would never go in a hoist (he didn't), if he had a pureed meal (just one), if I couldn't lift him anymore (I did until the end), if the he needed to have the carers who came into the house actually do something directly for him (they didn't), if the days started to become like the nights (that started to happen). He didn't want to die from pneumonia, and winter was coming. He didn't get pneumonia and he escaped winter. But luckily, in the end he went quite peacefully and for that I will always be grateful. He is now running free, smiling and happy!
I spent 24/7 caring for him and it was at the time challenging and exhausting. Now he is freed, I realise it was a privilege to have been able to give him all my love and time and energy. I will cherish our times together and now I have so much time on my hands I am lost.
He planned for our future always, and before he died, he planned for my safe and secure future. We even had a Civil Union last August (something we really never felt we needed).
Just before he went to hospital (for the one and only time), he wanted to tell me something: he said "Thank you for everything; I'm sorry if I hurt you (it wasn't always easy); I want you to get healthy again and have a holiday and enjoy the rest of the year off; let our friends support you because you are so independent; I am so lucky to have had you in my life especially when I was sick. Don't remember me the way I am now, but the way I was before." But most important for him, he hung on until the day after my birthday.
He was amazing; only used Rilutek for 7 months and stopped; only took a mild drug to help the excess saliva for the last month. He hated all medicines and fought on alone and had the right to make these choices. Now I realise how incredibly strong he was. I would have taken everything under the sun to ease my discomfort.
Do I miss him! Hello! I will miss him for the rest of my life. The outpouring of grief and love around the world has been staggering and helps me so much (he knew it would). Today a friend came to visit to deliver special messages he gave her to give me after he had died. He always thought ahead.
I now have many ideas in mind to celebrate his life, and more importantly, that I want to help other CALS. Why? If I can spare one person any anguish and they benefit from my journey, then I would do it in a second. I used to sometimes read the forums, and now and then I would see an idea, and more importantly, it made me realise that we are not alone. I'm not trying to be arrogant, but when you have been through what people go through, both those who have ALS and those care for them, you become part of a special club.
When Michel was in the middle of this, I said to myself, when this is over I am going to run as fast as possible from ALS/MND and never look back. Hah! Now, I have a passion to help and support and share that I never thought possible. ALS is the enemy and the only way is to fight it more now than ever. It will be another way of honouring the memory of my beautiful, talented, special man!
Thank you for reading...Graham
His first symptoms showed two years ago. His case was one of the most aggressive his neurologist had seen. But through it all, he was brave and strong and proud. We spent the last 6 months enjoying life, the summer here in Sydney, and doing as much as possible. I took him out nearly every day, to the beach, to cafes, to restaurants, to the park (where I would run pushing his wheelchair, push it hard, let it go and watch him speed around the track swaying from side to side, free) , downtown...I did everything possible for him. But sometimes I didn't want to go out because I was exhausted. He never tired from going out...it gave him life.
The days were good, the nights a nightmare, waking constantly to turn him, sit him, give him something to drink, reassuring him, re-positioning him, cry with him. You all know what it is like. We had lines in the sand when he knew he had enough; he would never go in a hoist (he didn't), if he had a pureed meal (just one), if I couldn't lift him anymore (I did until the end), if the he needed to have the carers who came into the house actually do something directly for him (they didn't), if the days started to become like the nights (that started to happen). He didn't want to die from pneumonia, and winter was coming. He didn't get pneumonia and he escaped winter. But luckily, in the end he went quite peacefully and for that I will always be grateful. He is now running free, smiling and happy!
I spent 24/7 caring for him and it was at the time challenging and exhausting. Now he is freed, I realise it was a privilege to have been able to give him all my love and time and energy. I will cherish our times together and now I have so much time on my hands I am lost.
He planned for our future always, and before he died, he planned for my safe and secure future. We even had a Civil Union last August (something we really never felt we needed).
Just before he went to hospital (for the one and only time), he wanted to tell me something: he said "Thank you for everything; I'm sorry if I hurt you (it wasn't always easy); I want you to get healthy again and have a holiday and enjoy the rest of the year off; let our friends support you because you are so independent; I am so lucky to have had you in my life especially when I was sick. Don't remember me the way I am now, but the way I was before." But most important for him, he hung on until the day after my birthday.
He was amazing; only used Rilutek for 7 months and stopped; only took a mild drug to help the excess saliva for the last month. He hated all medicines and fought on alone and had the right to make these choices. Now I realise how incredibly strong he was. I would have taken everything under the sun to ease my discomfort.
Do I miss him! Hello! I will miss him for the rest of my life. The outpouring of grief and love around the world has been staggering and helps me so much (he knew it would). Today a friend came to visit to deliver special messages he gave her to give me after he had died. He always thought ahead.
I now have many ideas in mind to celebrate his life, and more importantly, that I want to help other CALS. Why? If I can spare one person any anguish and they benefit from my journey, then I would do it in a second. I used to sometimes read the forums, and now and then I would see an idea, and more importantly, it made me realise that we are not alone. I'm not trying to be arrogant, but when you have been through what people go through, both those who have ALS and those care for them, you become part of a special club.
When Michel was in the middle of this, I said to myself, when this is over I am going to run as fast as possible from ALS/MND and never look back. Hah! Now, I have a passion to help and support and share that I never thought possible. ALS is the enemy and the only way is to fight it more now than ever. It will be another way of honouring the memory of my beautiful, talented, special man!
Thank you for reading...Graham
