Last post Sun, Jan 27 2008 2:30 AM by JonathanBlake. 33 replies.
I agree with the last post-er. You need to take care of yourself. I did it all for 15 years until my health was affected and realized I had to take care of myself to be able to continue to care for my daughter who may need lifelong care. Are you eligible for respite under the Division of Developmental Disabilities? It was the only help we got and a lifesaver (they also cover behaviorists, cash stipend for educational/medical things not covered by school or insurance, special camp etc.) You can contact Special Child Health Services at (609)777-7778 and get a free case manager in your county who will also help with the DDD application, insurance coverage, etc. Another great resource is Parent to Parent which is trained volunteer parents of children with the same condition. I called them when my daughter was born with kidney disease then again back at square one when she was diagnosed with autism at age 7- they can be reached at (800)FSC-NJ10. Hope this helps-it helped our family.
Lauren
Thank you so very much Lauren for the information.
Jennifer
care giver is a job a never gave much thought to but after four years of my husband beign a 6-7 quad i tip my hat to all who are apart of the care giving world and to the fact that those who are being cared for i know at times it is hard for him to ahve me doing things all the time for him like help going to the restroom and always being the one to cook there are days that i am sooo tired i cant see but its days like that that make our love stronger and i see him pushing himself to do new things! we have two small kids and watching him being a daddy wrams my heart. the most challageing thing is being together 24/7 we donthave much family to help and friends are not sure how to help but little by little we find our way i just want to say that you are so right with love you can do anything GOD BLESS ALL OF YOU CARE GIVERS OUT THERE
Dear Bruce,
I am fully functioning and able-bodied, living with my wheelchair-mobile wife (Cerebral Palsy) and her wheelchair mobile mother (Ataxia). Thirteen years with the former and eight years with them both. In November, I had surgery for a double-hernia and couldn't lift anything heavier than a gallon of milk for six weeks. I had two women in wheelchairs waiting on me hand and foot. It should have felt like a great change of pace, but yes, like you, I felt guilty for putting them through all the work I used to do for them.
In reading your post, all I can offer is what I have learned from being the last bastion of defense between my wife's problematic situations and 911. I read Linda's response and have to admit that your wife sounds a lot like mine. I have to remember that frequently the friction between us stems from conflict between what I want and what she needs. My ego takes it in the shorts every day, but her needs take priority. I like to say that there aren't five people in my state who would put up with everything I support for my wives :-) ; and since there are five million people in Oregon, if you do the math you see that it makes me one in a million. That makes me feel pretty good when I need a boost. Another thing I've learned about domestic tranquility: most conflict between us comes from one of us getting an "I don't love you" message from the other. This is a blown communication, and by clearing up the misunderstanding, the problem ceases to exist. I don't know about you, but knowing my wife requires me to see past her wheelchair, her affected speech and unique socialization methodology and her right-brain-dominant thought processing. When I learned to do that, I also learned to see through my own superficial appearances and find someone inside me that I really respect. Long ago, I decided not to cook the goose that lays those golden eggs. My wife thinks she needs me worse than I need her. Maybe she does, but when her time runs out in this lifetime, I know she's utterly irreplaceable. I suggest you adopt the same mindset. Good luck to the both of you. I hope something I've said helps you. God Bless you both.
JonathanBlake
