Danijela
Senior member
- Joined
- Dec 3, 2008
- Messages
- 667
- Reason
- PALS
- Diagnosis
- 11/2008
- Country
- UK
- State
- UK
- City
- Bolton
We had a tough time lately: pneumonia, hospital stay, weight loss, incontinence, inappropriate care package...you know the score.
And once I paused my endless tasks I realised that L was BECOMING ALS. All our conversations and all of our interaction was about ALS and associated issues and needs. It absolutely DOMINATED everything.
This is not how I want to live my life. I would rather have 5 minutes with the old L than 5 years with THIS. I told him so. I asked 'what happened to that guy who loved music, politics, art? Who are you - Mr Body Fluids?' This had some impact as he a/cheered up b/ decided to cut down the ALS talk.
There is also something else I realised about carers and health professionals. For them, giving care (in whatever form, from showering and hoisting to prescribing equipment and asking questions) is IT. The focus. The aim. The task itself is the end goal. For ME, and US - it is just means to an end - which is being as normal as we can be. Way too much focus was on the tasks, with Laurence allowing it to be so. I want Laurence in the wheelchair showered and dressed - not because I care about dressing and showering but because I want us to go out and do Christmas shopping.
Over and out.
Dani
And once I paused my endless tasks I realised that L was BECOMING ALS. All our conversations and all of our interaction was about ALS and associated issues and needs. It absolutely DOMINATED everything.
This is not how I want to live my life. I would rather have 5 minutes with the old L than 5 years with THIS. I told him so. I asked 'what happened to that guy who loved music, politics, art? Who are you - Mr Body Fluids?' This had some impact as he a/cheered up b/ decided to cut down the ALS talk.
There is also something else I realised about carers and health professionals. For them, giving care (in whatever form, from showering and hoisting to prescribing equipment and asking questions) is IT. The focus. The aim. The task itself is the end goal. For ME, and US - it is just means to an end - which is being as normal as we can be. Way too much focus was on the tasks, with Laurence allowing it to be so. I want Laurence in the wheelchair showered and dressed - not because I care about dressing and showering but because I want us to go out and do Christmas shopping.
Over and out.
Dani