On Sunday we had a meeting of the people who have been doing some caregiving for my partner, under the “CSIL” programme — Community Support for Independent Living. This program gives you the money to hire your own caregivers independently. I don’t think they usually give it to dementia caregivers, because it was set up for physically disabled people who wanted to direct their own care. However, in our case, so far, it is working wonderfully, since I hire only people Don likes, and they can take him out in the car (which equals freedom from his constraints, in his mind) and take him to concerts, the museum, etc.
Anyway, we all got together for a quick meeting and debrief. We talked about the different experiences each caregiver has had — what he can do, what works — for example, care rides, and what doesn’t (too crowded a situation). We talked about the issue of bathrooms — when the caregiver needs to go, what do you do with your client, who is liable to get lost by way of panic? And vice versa. Answer – give him something to hold, and, for both of you, use the disabled washroom if there is one, because it only has one door, so it is easy to watch.
We laughed, and told a few stories, (including how to use the old Navy stories as a way to distract him) and all understood that the goal is to keep Don entertained and happy, so that he is “healthy” longer. And to give me some space so that I can rescue my own life.
I got some insight into what my partner is like when I am not there too.
In the end, one friend hugged me as they all left and said, “You have a team now.”
And yes, a team meeting to discuss changes and further developments seems like a very good idea every couple of months. That is another advantage of being on the CSIL program — the ability for the prime caregiver to share in that team evaluation aspect of care.