Hospitals, Hospice, and saying goodbye to my daughter
I've debated about whether to post this, but I know some of you are aware of my daughter's health problem.
Yesterday my daughter, my only child, entered an in-patient hospice care unit. She is 33 years old.
Andrea was diagnosed with type 1 diabetes when she was 10. She managed it well at first, but very poorly through her college years. Her first complications, neuropathy, blindness (mostly reversed by surgery) and kidney failure, began in her late 20's. Less common complications like gastroparesis (neuropathy of the nerves controlling stomach emptying) came next. She now has very rare painful complications like myonecrosis (dying of the muscle tissue in her thighs) and calciphylaxis (accumulation of calcium deposits in small blood vessels of the skin and fat). The latter has a high mortality rate, even when treated. In late December she told Kelli and I she doesn't want to fight anymore. Since then we've been gathering family and friends to say goodbye.
Other than her difficulty managing diabetes, Andrea has been a great daughter. She loved both horses and children, and became a therapeutic riding instructor. Later she became a pediatric speech therapist. The number of former clients that have come to visit her is amazing!
This is easily the worst period of my life to date. I have taken a leave of absence from work to be with her until the end. Since she is in stage 5 kidney failure, and has been on dialysis for a couple years now, she won't last long. She seems at peace with her decision - much calmer and happier than I've seen her in years.
Obviously my triathlon goals seem pretty insignificant now. I will probably continue training to help manage my stress.
Comments
@Scott Imlay - I'm so saddened by your news. I pray for peace for you and your family during this difficult time.
@Scott Imlay , no words, just tears. Children are a gift from God and it grieves me to hear this. Praying for you and your family through this sad time.
@Scott Imlay - so sorry you are dealing with this. Sending you strength & peace
Oh Scott, I cannot even begin to imagine what you and your family are going through.
My best wishes and love to you all!
I am so sorry to hear. I can't imagine what you are going through. My family wishes you the best.
@Scott Imlay , I am also so sorry to hear this and want you to know I am thinking of you and your family during this most difficult time.
Scott, there are no words of comfort I can think of. I can only send you prayers --- for you and yours. I am glad you are able to take leave to spend time with your daughter now that she has made her decision.
Take whatever s/b/r can offer you in stress relief or chuck it all to the side while you spend time with your family. Either way you chose is the right way.
So sorry to hear your news Scott. Thinking of your daughter and wishing her peace. Take care.
Reading this totally break my heart and brings back so bad memories. We lost our 2 first kids because of leukemia and I truly understand what you are going through. Wish you the best and hope you can spend quality time with her.
Sending you strength
Scott, I am so sorry. My thoughts and prayers are with you and your family.
Scott, I’m sorry for you and your family. It is a blessing that your daughter is at peace with her decision, and that so many of the people that she has helped are still in her life.
Scott , thank you for being brave enough to share your pain. I'm praying for you and your and family to feel the grace of God surrounding you and giving you peace and strength. 💔
Wow @Scott Imlay thank you for sharing. I can't imagine the bravery it takes to come to this decision. Diabetes is such a cruel disease and can inundate patients with a constellation of organ dysfunction, pain and suffering. I wish you and your family well during this difficult time.
Scott, sorry to hear this sad news. Your EN family is here for you as well. If you need us, let us know.
Thank you everyone for your kind words!
@Francis Picard your post made me cry. I can't imagine losing two children!
My daughter gets a unicorn!
Jesus @Scott Imlay I cant even imagine what you and your family are going through. Hopefully you all can take some comfort in the peace your daughter has with the situation. Know that we are all here for you in whatever way possible.
@Scott Imlay each one of us experience loss in a different way. It’s not easy when the natural cycle is broken: we expect to see our parents leave, not our kids. I am sorry that you and your family are going through this, but it’s comforting to know that Andrea is at peace and joy with her decision. Please know that we will have you and your family in our prayers.
@Scott Imlay So Sorry. My reaction is always the same to news like this...I wish I could help. As Jorge said we all deal with this kind of loss in different ways. For me in similar situations a run or a swim, even if just for a few minutes, was a place for me by myself process some of the grief, or just remember. Maybe there will come a time when this is something that makes sense to you. I will say that on my run today It's for sure that you and your family will be in my thoughts. Be strong. Lean on those around you. Find peace.
@Scott Imlay There are of course no words that help at a time like this, just knowledge that your daughter is at peace with herself and her decision.
Scott, Nothing to say except I am sadly adding myself to the cumulative power within this thread that is thinking of you , Kelli , Andrea and the rest of the Imlay family.
@Scott Imlay this is unimaginable, so devastating. Sending you positive thoughts. Be strong and the team is here for you.
Scott,
I can't even imagine. Know there are many people that are thinking of you and your family. I'm very sorry...
Scott, I hope the strength and kindness of friends and family will sustain you through this unimaginably difficult time. My deepest sympathy to you and your family.
thanks for sharing. take care. best thoughts to you and your family. my wife lost a child in the past couple years so have an idea where you are.
Andrea passed away today. Kelli and I are exhausted and terribly sad!
Thank you all for your kind thoughts and prayers!
😥
@Scott Imlay - so sorry for your unimaginable loss. Having lived through something similar, losing my sister at age 25, I know there is no greater pain for a parent. Breathe... for me my concerns were most for the people around me (my father was 4 weeks post-op from a double bypass). Be there for Kelli, but make sure to be there for you. Take time, process this, live. Andrea would want to see you soar and would be pained by any pain you are feeling. If you want to have a virtual beer ping me..
:( so sorry for your loss @Scott Imlay
:( Never should a parent have to deal with this tragedy. My prayers are with you and Kelli.
@Scott Imlay - I am so, so sorry to hear of your daughter's life long struggle with diabetes. I cannot remotely imagine losing a child and you have my deepest sympathy. Wishing you and your family the best under these trying circumstances.