Thursday, April 19, 2012
As I was making my umpteenth call the other day, all things regarding Blake, I was suddenly overcome by the realization of what it takes to manage his life. We have a least 2-3 doctor appointments a month. He takes several medications, needs letters to certify his disability for this agency and that agency, managing caregiver schedules and payments, well the list goes on. I'm sure you can relate. I'm an extremely organized person. I have spreadsheets, charts and files of all sorts. And I truly don't mind doing this job. I do it with love and would be happy to do it for another 50 years. But I'm 55. Whose going to do this job when I can't remember things so well anymore? I do have a system for giving him all his medications each day. They have interaction issues, so everything is timed just so, so hopefully I'll be able to continue this routine for awhile. But who will do it when the inevitable will come? So you think about it?
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http://www.cnn.com/2012/04/16/health/autism-homeless-man/index.html
Valerie, I think about this all the time. I too do Jakes large amounts of medication and set it up for a month in advance. I have cards everywhere of his meds schedule. I don't know what will happen when the inevitable will come. I have thought many times of taking him with me if I know my end is near. there will never be anyone who will love and care for them like us and all they have known was everyone of their needs have been met. who will meet those needs?? I shudder at the thought of him not being well cared for after I am gone. I would rather him have a shorter and only happy life than a long life where in the end he won't be loved or cared for. I know I need to address it but I have to tell you I suffer from such anxiety I try not to think about it. It scares me to death.
It's not just dying that's the problem. It's aging as well. I do have an older son who is his successor guardian, but we are all in agreement that Blake is not going to live with him, however Hunter will have to be involved in some way. But of course it won't be the way I am. I am hoping that there is some way to eventually start a community here in Florida that will be a good place for Blake to go in maybe 10 or 15 years.
Jake has an older sister too but its hard to put that burden on them. she is getting married in October and will be starting her own life and family. I don't want to burden her with him. Hopefully she will make sure he is well care for. thats all I can ask for.
I so agree with you..I too, am in the same boat.
I am the mother of a 29 y.o. autistic, and he got on the APD list too late and will probably never receive services. (I didn't know about services like this until he was about 17 - I wasn't stupid, just not informed.) While there are places like Promise in Brevard opening for kids like ours, if they aren't on APD there is nothing for them when their parent's are unable to care for them. Places like Promise in Brevard don't take private pay or money from a trust. My older son has children of his own and I can't expect him to take care of his brother. I didn't have two children so that one would be around to care for the other, even though my older son says, he doesn't mind doing it.
It is heart-wrenching. I am in the same boat as well. These people are completely helpless and so dependent. The only comfort I have is to know I have a God that cares for me. And Evan.
Casting all your care upon him; for he careth for you.
1 Peter 5:6-8 (in Context) 1 Peter 5 (Whole Chapter)
Hi Gerogia. It is stories like yours that keep me focused on the dream of building a community here in Florida. We are actively working in that direction.
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