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Tonight's picture was taken in November of 2005. Mattie was three and half years old. Mattie loved his pajamas and he especially loved climbing and jumping on our bed. In fact, on the weekends, if I did not get up early enough, I would hear Mattie running down the hallway from his bedroom, into ours. He would then come over to my nightstand and literally stare at me. As if he could wish me to wake up! Some times I would indeed wake up but other times he resorted to climbing into bed next to me to make sure I was awake. Like Peter, Mattie loved the morning hours.
Quote of the day: In days that follow, I discover that anger is easier to handle than grief. ~ Emily Giffin
My dad had his second to last physical therapy session today. Literally he has been doing therapy at the hospital since July 7th. Four months later, we have done speech, occupational, and now physical therapy. On December 1, it will be my dad's last session. Mainly because he has plateaued and there really isn't more the therapists can do with him. So now the trick is how to maintain what he learned. The weight falls on me, since my dad has NO memory of anything he has done with his therapists. Literally you can ask him five minutes after a therapy session is over what he did, and he truly can't tell you.
The therapist and I have discussed getting him a personal trainer, skilled at working with people who have dementia to come to the home. I even found such a company, with licensed professionals. Of course the catch is health insurance will not cover it, it is an out of pocket service. I am discussing this with my parents and neither one of them seem open to this concept. But it would help me, and remove me from having to be my dad's therapist too. I find that he performs much better and works harder for a stranger than he will for me. So in this case, a personal trainer is a good option for him.
Changing the subject, later today, I received an email from a parent of a child with cancer. The email said:
I wanted to reach out because I learned about the Standards of Care you guys worked on and I just wanted to say thank you, it was exactly the things I’ve felt like we needed support with all along but haven’t gotten. I’ve kind of felt crazy all along for wanting these kinds of support. I thought for a while maybe I was the only one struggling so much and that’s why none of these supports are in place as a Standard. As time has gone on I've realized I’m not alone and so many other families are struggling too, so again thank you for working to make sure those supports are put in place I think it’s so needed and so important. I also just wanted to say that if there’s anything I can do to help or share our story and how needed these things are I would love to help. I have the link for your Standards brochure and will share it with our hospital and I hope that’s a step in the right direction.
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