We're at the very end. Mom's cancer has completely taken over, her scalp is covered with open sores, and her lungs are filled with pneumonia. She isn't running a fever because her immune system has completely shut down: it has nothing left to give. Mom might go on a while with her ventilator, or she might pass away during the night. That's how fragile the situation is. "Hours or days," we were told; that's how long Mom has.
Within 48 to 72 hours, our family is going to have to make the decision to extubate Mom, removing the support of the ventilator. I've been warned that that's how such things go, and it appears we're the family next in line to experience this particular pain.
The doctor tells us that it's possible Mom might continue to breathe after extubation; it happens with some patients, and it's hard to predict how long the breathing might go on. He said that, if it appears she's breathing on her own for some time, she can be moved upstairs to a small hospice facility where she will be given palliative treatment so that she experiences neither anxiety nor discomfort as she fades away. Both the doctor and the social worker felt that the entire family should be there for extubation, an idea that we already agreed with.
So there will be no true hospice care of any kind for Mom-- no homebound hospice, nor an institutional hospice. In her current condition, she's too delicate to move anywhere. The ICU will be where she spends her last few days, and unless we as a family fly off the rails and somehow decide otherwise, Mom will be extubated this week.
That gives Mom's friends only a few days to make their pilgrimage to her side. If you're a friend, tell her goodbye, and say how much you love her and will miss her. If you feel like crying, then cry. If you feel like laughing, then laugh. Don't force yourself to act with fake cheer or bravado. Now is not a time for falseness.
Sean and I are at the parents' house; we left before Dad and David did, having taken some time to say preliminary goodbyes to Mom. When David and Dad arrive, we'll be discussing the next steps, and getting right to work on whatever needs to be done for a memorial service, for cremation, and for whatever other post-mortem duties await us.
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Marathon
12 years ago
16 comments:
Our family's thoughts are with yours...
Kevin –
I have read your various blogs over the years and this would be my first comment left to date.
As my wife is originally from Korea (we met at my engineering university), I started to read your blogs as through your humor and personality I was able to obtain additional insights and perspectives into Korea as a culture, its people, and one’s experiences from an American’s point of view. The “bonus” blogs regarding religious perspectives, teaching experiences and culinary feats of amazement with a hot plate were astonishing. I say ‘thank you’ for sharing this with us and allowing us into your world, you are braver than I in that respect.
It is at this time however, I offer my prayers for your mother, father, brother and yourself. May God be with you and your family
Mark
Thanks, Mark and Justin.
I wish I could be there in person to offer my support--maybe you can take some comfort in the fact that you have people thinking of you around the world.
Kevin,
As a long time follower of "your walk" I have to say that my heart is heavy for you and your family this evening. I have some experience where you are and still wish I could take some pain away from all of you.
I will pray for a smooth transition for your mother and pray that God and time find ways to unburden your hearts.
Thinking and praying for you all -
Mariann
Washington
Kevin, my family and I are thinking of you and your family. You have been so strong for your mother, the best son a mother could have. I wish you had both had more time, but I know from what I've read of this hard walk of yours that your mother has appreciated all that you have done, and I believe that no one could have done more.
Jeffery Hodges
* * *
I've tried to find the right combination of words to convey everything in my head and heart at the moment for your mom, you, your family, and sadly, the words have evaded me. And I think that's just IT: somethings escape describing.
Just know I wish I were able to have consoled you while you were so close, proximally, in NYC. To give a hug. To break bread.
The last portion of the poem "Footsteps in the Sand" seems so fitting right now. The solitary set of steps. We're all carrying you in our thoughts right now, my friend.
I'm here if you want to talk.
Kevin - I have read your blogs over the years and have always enjoyed your candor and views. My best wishes and prayers for you and your family.
Robert Neff
Kevin,
I’m like many who never seem to know or do the right things when it comes to the passing of our own loved ones or those of our friends. You’ve said some really great things regarding visitation and going with whatever one is feeling at the moment, but if it’s anything like what I’ve dealt with in the past, some people will be pillars of strength, others will fade into the background, and others yet will all but disappear due to their own feelings of sorrow or feelings that they might somehow upset you and your family. No matter what happens, you’ve done your best and it’s a time for forgiveness all around. I wish I would have known that a bit more when I was much younger and my uncle (a priest) aborted my father’s eulogy at the last minute because it was too difficult for him, and it fell on me to say something profound. I instantly became angry at that exact moment which carried over for way too long. I just didn’t realize at that time that grieving is different for everyone, no matter the directness of the relation.
I believe that you’ve helped countless others, including your extended family, by keeping this blog of updates of what is going on in such personal detail of the extremes life takes on in such trying times—something I’m sure your mom, and family, are proud of. I know it’s helped me put some much needed perspective into my father’s passing and to prepare for the eventual passing of my own mother. Thank you for that.
Take care of yourself and your father and brothers and don't be afraid to lean on them and your friends for support.
John
Kevin:
As you know, I'm not a fan of prayer, but I do believe in the power of thought, and mine is now with your mom, you and your family.
K.
Kevin,
Your cousin, Mark, sent me a link to your blog back in the fall. I have been reading it off and on, but admittedly had not read over the holidays. Mark texted me last night to let me know the update on your mom. I am very sorry to read that the end is near. My thoughts are with you and your family. Know that you are not alone in your grief.
Jennifer
My thoughts are with you and your family during this difficult time.
Kevin, I think you've handled this situation with a lot of courage and honesty, and I applaud your decision to share the process with your readers.
My thoughts are with your family as well.
Kevin, I'd been checking back with your blog, dreading this post. I'm so sorry to hear of your sad news. My thoughts are also with you.
Kevin,I just want to say how sorry I am for your loss, Your Mom was a wonderful woman and I feel I have known her through your blog. My best friend was diagnosed with a inoperable GBM 4 on 4/11/09,age 52,and we are going through a lot of what you have been through.We are at the Avastin/ct-11 stage,about 3 sessions in,and seeing no positive results. My buddy cannot walk,right side basically paralized,mostly non-verbal,and I am with him and his wife every evening helping with bath/bed prep. The love keeps us going, and your blog has helped me deal with this. Because of your blog, we were also asked to join the Cornell/Weil microcatheter trial, but we had already started the Avastin and his K score is at 40,not very good.After going through some history of your Blog, we do have other things in common, My dad is a retired letter carrier,over 38 years and just retired as the local NALC health benefits Rep. The other thing in common is we are one of the homes of Wegmans, in upstate New York. Once you have shopped at Wegman's, it put's another idea on the whole supermarket thing. Our Thoughts and Prayers are with you and your Family. God Bless, Tom Sweeney
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