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Caregivers for younger people ...

Tim and Diane of Celina, OH write:
We cared for our severely disabled, non-verbal, but highly intelligent son for 20 years - he was the joy of our lives and of those who knew him. We feel we missed a lot with our other two children (school events, vacations, etc.), but they learned that responsibility, love, and commitment are important in a family. Our son died a year ago at age 21, and we find a big hole in our daily lives.

Our biggest concern was for our son's future, when we were no longer able to care for him (or when we just needed a break). A nursing home was not an option for us - we were not impressed with the care we had seen for other residents. We want families to know there are other options - in home environments in their own communities, with staff who WANT to be there. This means better pay and benefits for those who choose to care for our loved ones when we are no longer able to do so.

Jim of Ridgefield, CT:
I am a caregiver for my wife, Hannah, who has had chronic progressive MS for 13 years. And although I have "hit my stide" in terms of caregiving responsibilities and duties, I still feel a tremendous sense of loss and sadness about our lives. Financially, emotionally, spiritually and physically I am exhausted. I have toiled so hard to feed, clothe, and maintin some quality of live for my wife - who is wheelchair-bound and needs total daily assistence, that now I am suffering from panic attacks and anxiety.

Surely my health has suffered over the years, but there is no one here to take care of me. We're pretty much on our own, left to make decisions about nursing homes, caregivers, health care as time and money permit. I wish we had a national healthcare system which would allow her to go into a nursing home without financially ruining my retirement savings. When that does happen - and surely it will - I will have to take a long, deep breath and gear up to face my continuing to work thoughout my "golden" retirement years.

Katie of Orange City, FL:
I was so excited to see your program tonight but fell asleep a few times as I am the caregiver to my two adult children with mental handicaps. I have been their caregiver for 31 years for my daughter and 28 years for my son. They are as 5 years old so I have a lot to do for them.

I do receive funds now for services for them as I was picked to be in a pilot program to be a "Consumer Directed Service" It still is not easy to find the help I need when I need it.

My most important worries are wondering who will do my job when I'm no longer able to. I have such a fear of "homes" since I've heard of the sexual assaults in them. How do we protect our loved ones when we can't be there? Is there an advocacy group for this? God Bless us all and give us strength to do for our loved ones.

Desiree of Tunkhannock, PA:
My son Tyler died 7 years ago from a mitochondrial myopothy at the age of 21 months. My husband and I were his sole caregivers. We had lots of family around, but when it comes to a severely disabled child who is tube-fed, non-mobile, and suffers from apnea, there was nobody that felt comfortable helping us out. He had many visits to Geisinger Medical Center in PA, and while I was there I saw so many children who were suffering. Many of them had no family - they were in the foster system.

It was heart-wrenching to watch my own child get sicker without any hope, but to watch these other children with nobody but the nurses, doctors and therapists to care for them just made me sick. There were even children there whose families were not intellectually or emotionally ready to care for them at home. I often thought that there is a need for a non-hospital setting to care for children who were in this category of too sick to go home, but otherwise functional. What about an Eden Alternative for chronically ill children?

Sally of Portland writes:
I wouldn't miss the program for the world. The on-line intro sure got the "incredibly demanding, unrelenting and lonely" part right. And the part about thinking no one else could do it as well as you. I've been caring for my 42-year old brother for the past couple of years, this summer through a bone marrow transplant. The worst is dealing with the indifference of the medical establishment from the place of intense terror that is the heart and soul of cancer AND its treatments.

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