Miami girl,
I was so saddened by your post, as you usually seem to be so helpful to others. I have heard you say that after 11 years you are used to your situation, but I always ask myself that deep down are any of us used to this “new norm?” After 5 1/2 years, I have to admit that I still miss my old self greatly. I was so sick & helpless the first 3 years, but then got the ability to walk (with AFOs & a cane) back, & did get my driver’s license back after 3 years. I also got about 75% of the use of my hands back. That was an exciting time for myself & my family members, but that all halted two years ago & I am no better today than I was then. They all seem fine with me the way I am now, my husband & my 3 children. But they will never know how much I miss being healthy.

I don’t think we will ever get over the loss of what we once had, having to depend on others to do things that were once so easy for us. My daughter & 5 month old grandson were up for this past weekend, she wanted to look at all of the old photo albums going back over 30 years. I actually got very depressed, thinking things like “how pretty I was before this illness”, “how thin I was,” “how athletic I was then,” etc. Then I wonder if any of them (my husband & 3 children) realize just how much I have lost, how small my world has become, especially needing 11 hours of sleep at night; even then never really feeling good.

I am not helping you, I just want you to know that you are not alone. I so feel your losses, but each day looks different, & I believe you can come out of this funk. I will live each day the best I can, but like you, when my time comes, I will be ready. I just wish there was something I could do to help you out right now. We are all here for you…
Blessingins, Pam

Roxie, Just read your last post with lots of tears and believe me, I do know what your are feeling. Today marks 1 year that my dad passed on.
Once he was diagnosed with cancer, I went into overdrive; first I believed I could fix it, then I believed I could make him comfortable, and finally I wanted him to go in peace. I am grateful for those 6 months our family had to say things that wouldn’t have been said and bond in a way we wouldn’t have bonded. I miss my dad every day, but talk to him nearly as often.
Wish I could reach out and give you a hug. So much to say…I completely understand your exhaustion and your mother’s need to have you there. I’ll keep you in my prayers. Know that you must take care of yourself in order to have quality time with your mom now. It’s so hard to manage.
My faith became stronger as dad and I talked about what was coming. I don’t know how people can get by without the belief that they will truly be better off. That’s how I know I can talk to my dad and he has often given my little signs that he’s up there looking down.
Have you contacted your local Hospice. They are an amazing group. It really helps.
Thinking of you and your mom,
JayDee