I only have 2 more stops to get my note in here so it will be VERY quick – especially for me 
Things are dire in my household. Mom is squarely on hospice, as is my dad. Mom just woke up from a 5 day encephalopathic coma; we decided to treat at home this time BECAUSE she is on hospice. I’m on my way home from work – I’ve not actually seen her yet. She is talking, walking and eating, so that would be an improvement.
My nephew went home on Sunday – his dad came to pick him up. Unfortunately Mom was not awake, so they didn’t get to do their goodbye. This is probably good from a crying standpoint because she always gets him upset. But, he was upset because it could very well have been the last time they saw each other, and she was not awake.
Hospice has told me (and sent the Chaplain out) that now is the time to say things that need to be said and do things that need to be done. I’ve been advised to capitalize on the good days – if there are any more left with Mom. They have said she may have days, weeks, or if we’re lucky, months.
I am certainly NOT prepared for my Mom to go, let alone before my Dad. I mean, we’ve been planning this for Dad for a long time – preparing ourselves, etc. We did get the official letter from the transplant institute that she is no longer a candidate. They were even nice enough to provide names and numbers of other transplant programs in case we are interested. I wonder what the take rate is for that…nevertheless, they didn’t have to do that so, I guess I’ll give them credit.
We are have a difficult time adjusting from fighting to accepting that the fight is over and it is time to maximize life; VERY difficult. I have been in this fight personally and with self-sacrifice for 7 years now…Mom has been fighting since 1992 – 18 YEARS. Most of the time she is asleep and weak and hasn’t really given much thought to giving up the fight, I would imagine.
You are a disruptor. The delivery of health care starts with you, continues because of you, and ends with you. Let's disrupt together to make the world better for family caregivers. 
Denise
Oh, Derek, I’m so sorry. How painful! I would also imagine it was hard for you to say good-bye to your nephew; he sounds like he was a wonderful partner in crime. He sounds like a wonderful young man.
I’m glad you have hospice to offer support and suggestions. How can we help you? What support can we offer you that would be helpful?
Thanks for taking the time to update us. It’s always so good to hear from you.
Emily Placido
Derek that must have been very hard for you to write, I can only imagine. I’ll keep you and your family in my prayers. Just know that you were there for your mom and dad when they needed you the most. Now, it is time to relish in the moments. I don’t know what else to say.
Sharon
Derek, I am so sorry about your Mom and Dad. I pray that in these last weeks or months you may have many sweet moments with your Mom. You have been a loving son to your parents. I hope that you will experience divine peace and comfort as you face today and the very near future. My prayers are with you.
Karen
Derek,
I am so sorry that you have to go through this. It is so painful and so difficult.
Since you have been your Mom’s caregiver for 7 years, I can only believe that you have provided a great deal of emotional support for her and that you have probably said all of the important things many times. I am certain that this experience has allowed you to become close in ways that others cannot imagine.
My Mom’s situation is much different. She has had several instances when I was assured she was dying within the day. Although the experience was wrenchingly tough, I know that the best thing–the only thing–was to be there and hold her hand. I know that she was comforted by knowing I was there.
One thing that comforts me is that I have come to know my mother in ways that none of my siblings have. I have come to know here not only as a mother, but as a complex human being.
My heart goes out to you. I will be praying for you and your Mom.
Karen
Bette
Derek,
I am so sorry. Please know you are in our thoughts and prayers. How blessed your parents are to have you as their caregiver. You always think about their best interests. Be careful, and be sure, particularly during such an intense time, that you take care of yourself as well.