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
It sure is a difficult call. We tried to sell our home and buy another more suitable. After 3 months with no luck, my husband had progressed so much that he would not have been able to lift a box, nor do any of the 'odd jobs' that you do to make a new home just right for your needs. We realised that we had to start figuring how to make our current home work and fast as any changes here could take months to get done.
In the end, we simply worked with what we had and made the lounge room his room, and found many cheap work arounds, most of which were temporary.
In our case my husband turned out to be rapid progression and was gone 11 months after diagnosis.
What you have to remember is that it is the breathing that takes the person - so watching progression of legs and arms, even speech and swallowing can give a false sense of security. I didn't see you say anything about where your mum's breathing is at and how it has been changing? This can change quite suddenly too. I don't want to sound doom and gloom. After being involved with this disease for more than 6 years here and other support places, I just know how unpredictable ALS is.
These are the hardest conversations of course for you to raise with your mum because a typical situation is: CALS are looking ahead to plan, PALS are pulling on the reins pretending it's not too bad. So there is often a big gap when conversations start up.
In the end, we simply worked with what we had and made the lounge room his room, and found many cheap work arounds, most of which were temporary.
In our case my husband turned out to be rapid progression and was gone 11 months after diagnosis.
What you have to remember is that it is the breathing that takes the person - so watching progression of legs and arms, even speech and swallowing can give a false sense of security. I didn't see you say anything about where your mum's breathing is at and how it has been changing? This can change quite suddenly too. I don't want to sound doom and gloom. After being involved with this disease for more than 6 years here and other support places, I just know how unpredictable ALS is.
These are the hardest conversations of course for you to raise with your mum because a typical situation is: CALS are looking ahead to plan, PALS are pulling on the reins pretending it's not too bad. So there is often a big gap when conversations start up.
