Just wondering what is the best advice or what have you learned along the way as being a caregiver?
You have got to take care of yourself if you are going to care for another. Not only is it a physical necessity to be healthy, it is a psychology aspect that the cared for loved one can mirror.
Take care of yourself and do fun things occasionally.
I’m obviously not a caregiver but this is always what I hear. When I was suffering I sure didn’t begrudge my parents if they still went to the movies or did things with their friends. They earned the right to enjoy themselves and to enjoy their lives.
I became a strong advocate for my son, and insisted on getting him help whatever it took. One of the most helpful things I did was keep a notebook with dates recording his behavior, so that I could submit this to his doctors when necessary, especially when he was being committed to a hospital. I now have him sign a release so that I can talk to his doc and even attend occasional appointments when it is beneficial.
Smile and try and cheer them up a bit everyday knowing that you could be like they are needing help someday.
Make a binder with plastic inserts.! keep all documents in it. Guardianship paperwork, hospital visits, RX history. Its helped me tremendously.
I’m not a caregiver, but I would say “don’t take any of it personally”.
What works one day may not work the next!
I would have to say stand back and away a little more **
The advice I got in my support group was of course not to give up hope.
I think the best lesson I learned was to leave the illness on the shelf sometimes. My brother didn’t always want to talk about his illness, sometimes he wanted to talk about sandwiches, or funny squirrels in the park.
I like to tell people not to forget the person underneath the illness.
Take care of yourself and let go of any guilt.
be tolerant and caring and non judgemental.
Dial down the emotion and the volume.
I am the volatile Irish type. I am not actually extrovert but nevertheless I can get pretty overexcited, whether over something good or bad. I have had to learn to be a bit more serene around my son. And it does make our relationship much easier.
I’m still very noisy round my friends, though!
And the other advice I’d give: join this forum. It really does normalize your experiences and make everything much easier. The support, advice and insight I have got from talking with people with sz and other family members is immense.
If you can, find a support group for caregivers in your area. You need other people who understand what you are going through to talk to. As a child of a parent with the illness), that wasn’t available to me. I’m making up for it as an adult and taking care of myself better. You are carrying a big load that shouldn’t be yours alone.