Good evening friends. Thank you all for your kind words and suggestions from both your heart and from your life experiences. Honestly, it is comforting to realize that I am not completely alone on this dark road.
You know, one of the most difficult to process for me has been the loss of hope; it must one of those things you don’t realize you have until something diminishes or destroys it. It must have been at the foundation of everything we’ve been doing. In addition to the actual loss, will we also have to navigate the loss of hope?
I mean, I have found we grieve things along the path; loss of independence (driving, shopping alone, living alone), ability to feed oneself, mobility, now hope. I’m sure there will also be grieving for unable to get out of bed, unable to eat, no longer talking…and all of that to precede death itself.
Today I started out crying and then was able to choose NOT to have this day be filled with grief. Of course for me that choice came in the form of God’s grace – I am too emotional to be able to turn something off like that on my own. I’m pretty sure sanity would be much more attainable if I didn’t think so much – wouldn’t it!?
Have a blessed evening – I plan to.
-Derek
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. 
Bette
Hi Derek,
I’ve often thought about having a day where I give myself a break from “thinking”–after hearing you say that, maybe I will. Maybe tomorrow! (: It’s interesting you were thinking about “hope” today too. I have been writing a blog about our situation here and that includes thinking about “hope” for me. Although very different from your’s–hope in caregiving(at least for me) is going to have to take on a different meaning. We become the givers of hope for our carees, even though we are not feeling it ourselves. My mother is at a point where contacting a new doctor, or making somekind of a change here, is not going to stop her decline. So…I just need to be here for her and provide a place where she feels at home, and a part of. Maybe this is my new definition of hope–with her, so she’ll know she is loved and cared about everyday.
Donna Ryan
My story is different because my moms decline is due to aging…afterall she is 91 and had a wonderful life but realistically the eyes start to go as well as her hearing and it takes a little longer to walk …as well as the heart conditions. Of course, i have little hope in the respect she is going to get better…of course through time she is going to decline…..I have lowered my expectations on that topic. I now surrender that mom is not mommy….Im now caring for her and am learning to deal and appreciate this relationship for however long we are together…i must forget what was or how I wish she would be…but what is….It is sad and hard at times…but I dont want to waste every second of the time together feeling sad about what is no longer but try to muster up some sort of memories to help me later on…..
G-J
Derek, maybe it’s not so much a loss of hope, but it becomes an acceptance of something new, of being thankful for days that are not as hard as others. (You have permission to e-mail those words back to me should I need to hear them in the future.) I know with my Dad, when people would ask how he was, my answer became, “TODAY he is…” because it truly was a day to day thing.
Interesting comment about not thinking so much. When I inherited my Dad, as I put it, a friend gave me the book about women who think to much. Do you think I’ve read it? After almost three years, I still haven’t!
Wishing you a grace-filled Monday.
Sharon
“Hope” means so many different things to so many people. When your Mom became ill, it sounds like you held out in hope for a transplant to help her. When my husband was diagnosed four years ago I knew from the beginning that there was no cure for his disease. His disease is supposed to gradually get worse over a course of 6 to 10 years. A few people have lived to 15 years with this disease. Hence, my hopes for him included and include keeping him as strong and mobile as he can be for as long as he can be. He has declined significantly in 4 years, so there has had to be significant changes in my expectations along the way. There has also been significant grieving along the way.
When my mother-in-law became ill with cancer we had hope that she would conquer it for at least a few years with chemo. It looked like she had conquered it for awhile, but it has come back. She may have only a couple weeks before she dies.
I see so many similarities between my husband and my mother-in-law. My mother-in-law’s disease is just moving faster. Really none of us are going to go on living on this earth forever. We are all terminal. Who is to say that I will not die before my husband or even my mother-in-law? Who is to say you will outlive your Mom?
I define “hope” differently. Hope is looking forward with surety to what we do not yet possess. Hope is sort of the same thing as faith. I know with 100 percent certainty that my husband and my mother-in-law will some day be healed. Most likely that will not be in this life, but there is life beyond this life.
Allow yourself to grieve, but do not lose your hope. Joy, peace, and hope can accompany the grieving process as illogical as that sounds. There may no longer be a cure for your Mom’s disease on this earth, but you can still have hope in your heart. I am glad you were given the grace to experience some peace today.
Denise
Hi Derek–I often wondered about hope: Is it friend or foe? I have hoped, in the past, and have been disappointed. That’s when it felt like foe. Should I eliminate hope? I learned that hope is about making the most of our time, our opportunities and our relationships. It’s a hope about the quality, rather then the quantity, of the moments we have. This is how hope feels like a very special friend.
Wishing you a good day with many special moments.