affected
Guru status reached
- Joined
- Apr 26, 2013
- Messages
- 16,096
- Reason
- Lost a loved one
- Diagnosis
- 05/2013
- Country
- OZ
- State
- AU
- City
- lala land
I am so terribly saddened to tears to realise from that incredible PALS thread that there are so many who are in what I find a less than ideal, sometimes less than acceptable situation.
I'm not wanting to talk about specifics of any PALS here, definitely not. I'm talking in a general way only.
What I have noticed in the closed CALS group I am a member of is that over the past year there has been an increasing number of members joining there who purely just vent about how hard it is, how angry they get, how much they fight with their PALS. It dismays me beyond belief as they go on and on about things that are, well, just what you do for someone who has a progressive disease.
How can we help CALS to realise that this is the last journey they have with their PALS and that they need to make the most of every moment?
We know how hard it is to be a CALS, but at the same time, I would do it all again in a heartbeat for my Chris. I always felt that I had met Chris so that he would be looked after well and with love. His first wife had died of cancer (at only 41), and his kids certainly were not even remotely up to the task. As much as it was horrific that I was losing my dreams, losing my man, and having to do all the caring role, what he went through was just shocking. I still some days just stop and shake my head with a tear and think - my god, what he went through! Not, what I went through, but what he went through.
Now he has been gone more than 2 years, and I'm still around, so really my time as a CALS was 'just' one phase of a whole life. It was the final one for him and he deserved, as does every PALS, to have dignity and a high quality of care.
Maybe I'm naive or something, but I'm shocked that anyone can forget or neglect the most basic of care needs for someone they love.
I was not a perfect CALS, but I am proud of the level of care and love I gave to my Chris and I believe that has helped me heal afterwards.
I'm not wanting to talk about specifics of any PALS here, definitely not. I'm talking in a general way only.
What I have noticed in the closed CALS group I am a member of is that over the past year there has been an increasing number of members joining there who purely just vent about how hard it is, how angry they get, how much they fight with their PALS. It dismays me beyond belief as they go on and on about things that are, well, just what you do for someone who has a progressive disease.
How can we help CALS to realise that this is the last journey they have with their PALS and that they need to make the most of every moment?
We know how hard it is to be a CALS, but at the same time, I would do it all again in a heartbeat for my Chris. I always felt that I had met Chris so that he would be looked after well and with love. His first wife had died of cancer (at only 41), and his kids certainly were not even remotely up to the task. As much as it was horrific that I was losing my dreams, losing my man, and having to do all the caring role, what he went through was just shocking. I still some days just stop and shake my head with a tear and think - my god, what he went through! Not, what I went through, but what he went through.
Now he has been gone more than 2 years, and I'm still around, so really my time as a CALS was 'just' one phase of a whole life. It was the final one for him and he deserved, as does every PALS, to have dignity and a high quality of care.
Maybe I'm naive or something, but I'm shocked that anyone can forget or neglect the most basic of care needs for someone they love.
I was not a perfect CALS, but I am proud of the level of care and love I gave to my Chris and I believe that has helped me heal afterwards.