My family is at a difficult time right now. My father and his brother both inherited the KD gene. My father passed away from aspiration pneumonia complications in 2004, but my uncle continues to do relatively well for a 58-year old - he is not wheelchair bound and can still get around with a cane. But as with all KD sufferers, the symptoms get a little worse with each passing year, and he has reached a point where it is difficult to do for himself.
My aunt was his primary support system. However, she has been battling cancer for the last year and a half, and it looks like she is losing the battle. My 2 cousins are relatively young - only in their mid-20's and still establishing themselves. I really want to offer them support and advice, but I don't really have any idea what to say. It was hard enough on my family to deal with my dad's KD and the difficulties that my mom had to handle; I cannot even imagine what my uncle and cousins must be going through trying to imagine life without my aunt.
I don't know that there is any good advice out there, but if someone has some, I would be glad to hear it and pass it on.
Sesara, what you have been through and are now going through again is very difficult. As you know from your personal experiences with your father, there are never any easy answers.
In my opinion you just need to be there for them. You need to let them know that if they ever want to talk or just need someone to be with (without talking) that you are there for them. Knowing what to say is not as important as being there for them.
This is a very difficult time. Here are a few of my suggestions:
* Talk to your cousins and explain to them how once your Aunt & Uncle are gone, that's it. They need to spend some time with them NOW. I know at their age, I did not realize this myself or never thought about someone "being gone."
* Ask your mother what helped her the most to assist your dad as well as herself as caretaker than try to do this for your Aunt & Uncle.
* One of my very best friends had terminal cancer 3 years ago and all she wanted was someone to talk to. We would go to "lunch" and she would insist I eat when she couldn't. Yes, it was difficult but I would do it again as they were some of the best remembrances I gave with her. We talked about the cancer, how she was feeling about it and if/when she may die. I was there for anything she wanted to tell me.
* If you are close enough, maybe do some grocery shopping for them, take them to appointments, take your Aunt for a girls only day even if you just get coffee. Make a meal and drop it off.
* Just call and say, "I love you and am just not sure what to say?" They should be able to take it from there and lead you to feel more comfortable.
Death is part of life and we will all go there sometime. It is too bad it is such a taboo subject.
Good luck and please update us sometime.
God is the greatest physician of all.
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614