Life With ALS.com

+    Diagnosed Aug 2005

+     Bipap March 2007

+     PEG July 2007

+     Trache and Vent July 2008

Still Living, Loving & Laughing

Caring for your caregiver.

This is an extremely important topic, if your caregiver is burnt out they will be of no use to you.

This is even more important if your caregiver is your spouse. They are too close to the situation so experience more stress than an outside caregiver would. Watching your loved one go down hill is emotionally hard so can take its toll very quickly.

Therefore it is important to give them some down time and/or time away to recharge. This will spare the possibility of burn out.

It will be hard to let your caregiver go away as they are the best ones to take care of you. It is definitely more comfortable to have them around than a stranger. But you have to allow your primary caregiver to get some time to themselves. They will be better caregivers after doing this.

It might take a lot of encouraging before they will as they will find it hard to leave you in the care of somebody else. But you will both have to realize how important this is. In our situation my wife did not want to leave me and I did not want her to either. After 2 years of not having a break I noticed her attitude was suffering and so was her ability to care for me. I realized we had to do something. We found a couple of outside caregivers, trained them, and made arrangements for them to stay with me while she went away for 5 days. It was just in time. There were some challenges but I survived and my wife was able to get some much need time away.

We have continued with these caregivers during the weekdays so she can get out and do things without having worry about me. Even if she decides to stay at home she is learning to relax and let the caregivers tend to me. She is much more rested now and feels a lot better. It has made a huge difference.

We are fortunate living where we do because we get government funding to hire our own caregivers. This provides a lot of flexibility. Without this funding I am not sure what we would do. I know a lot of PALS (people with ALS) don’t have this support so it makes it almost impossible to do what we have been able to do.

Added: Oct 23, 2010