Obit and Tribute for one of the most remarkable men I've ever known. I was privileged to call him family.
No Friday Finish this week... I have some quilts done but I got called out of town suddenly and ran out of content that I had photographed already. I'm back in Texas now but haven't made it home so this post is going to be a mix of some old favorite quilts that are hopefully new to most of you and some thoughts I had over the past couple weeks. Click on the quilts to see more photos.
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| Mariner's Compass |
Death in the modern hospital is a bizarre event. We've become totally disconnected from the natural way of living, growing old or ill, and dying at home. Although most people have never experienced that, they at least have some frame of reference for how it
might looks. On the other hand, hospital death with all the machines and the waiting and the false impression that we can control when and how we go, is completely foreign. For families to navigate this system and learn enough to make choices they are comfortable within the short period of time right before death is like trying to master quantum mechanics in just a couple days.
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| Bargello |
I was fortunate enough to be able to be with my family 24 hours a day as they processed understanding what was going on and what decisions needed to be made. But it's hard work! Processing that the end of life has come, and this is what it looks like, doesn't happen in one conversation. By its nature shocking information needs to be heard again and again, it needs time to sink in. It's big conversations and little conversations. It's answering random questions as they come up. It's talking sometimes in a big group and sometimes one on one and sometimes two or three.
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| Memory Quilt |
I was able to talk to them at any time, day or night, for two days, and I wasn't the only one with a medical background who could help explain things, and I still felt like we
barely had enough time to get everyone kind of understanding and accepting before we ran out of time.
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| Nursery Mobile |
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| Nursery wall hanging |
This is the field I'm going in to, and the last couple weeks have done nothing but reaffirm that this is what I want to do. But no matter how good of a clinician I am I can never be available 24 hours a day. With my patients I won't have the advantage of years of relationship and trust already built. Really good, holistic, palliative care for the last two days or week of life is too little, too late for families.
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| Quilt-As-You-Go Sampler Tutorial |
The new normal in American medicine is to fling families off the deep end into a strange world of breathing machines and artificial nutrition and, "The most compassionate thing to do would be to turn off life-support." Since when has that been a normal decision to expect someone to make? Families don't understand anything and doctors don't understand why the family doesn't "get it". The quick fly-by conversations at the patient's bedside serve to further confuse, as much as anything. They may as well be speaking different languages.
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| Drunken Circles, do. Good Stitches |
I've known of course that the whole chronic-disease, end-of-life system needs serious a overhaul. I see it every time I work. But living through it with one family, following them from beginning to end and being there in all the in-between moments, in the hospital and out, has given me a new perspective on just how grand this problem is in scope.
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| Scrappy Country Home |
This is just another reason I'm so grateful that Covered in Love has been able to reach so many people. A quilt really is a small thing when you're in these situations, but at least it's something. At least it's some small comfort for the people who are in those hospital rooms right now, something to say, "I'm sorry! I know it sucks; I'm trying to fix it but it's taking a while. You are loved; you are cared for; someone recognizes your suffering."
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| Fibonacci, do. Good Stitches |
Do me a favor if you're reading this and start to educate yourself about end-of-life and death issues. We all think it's too soon and it won't happen to us, but we all get there eventually. Remember, it's always too soon until it's too late. The most important thing you can do it talk to you family and make sure they know your wishes. I'll link some of my favorite resources below.
If you'd like to join in with
Covered in Love's mission you can learn more on the main page or check out the
block drive.
The current Covered in Love block drive is a fun string block and there's a GIVEAWAY going on, too! More info
here!
Linking to
Confessions of a Fabric Addict,
Crazy Mom Quilts and
Finished or Not Friday
I'm glad you were there for your family at the end of your loved one's life and sad for your loss. Thanks for taking the time to share those wonderful past projects. They are all SEW lovely!!
ReplyDeleteKat, it sounds like quite an exhausting but rewarding experience overall. I am so sorry for your loss. Even as you helped therapeutically and with your medical experience, It's good to know that you're processing for yourself as well. I adore those quilts that you just showed, but it is your words that really resonate. Death is inevitable and yet we don't want to talk or think about it until it's necessary. Thank you for reminding us of the valuable lessons in learning and thinking over key issues ahead of time.
ReplyDeleteSorry for your loss. It's true that patients families are not familiar or understanding of the medical jargon that professionals take for granted. There can be other surprises too.I am dealing with some issues with my 82 yo mother. . She makes excuses for not making decisions or judgements. She thinks things/ issues will go away if she ignores them. She was robbed,beaten and left for dead. She has lied about things like wills,executors and similar issues. I'm almost afraid to discover more.....
ReplyDeletePoor families dealing with the medical jargon and other surprises.....
Thank you for sharing that. It is something we should all be mindful of and as prepared as possible.
ReplyDeleteMy condolences on the loss of Mr. Hubler. He sounds like an amazing person, gone much too soon.
ReplyDeleteThank you for sharing some of your thoughts on this complex and difficult subject, and for the links to further reading. It's something I've been trying to educate myself about for years. My mother is very open to the hard conversations, my father much less so, and my stepmother? Forget about it!
Forgot to say: Your gallery of older quilts is lovely! You know my favorite is the nautical baby wall hanging :) Is that the baby's name spelled out in signal flags? I could go translate it, but I'm feeling lazy.
ReplyDeleteIt's wonderful that you were able to be there for your family. I appreciate your sharing your thoughts about how we handle end of life issues in our country. There is so much we have to process when faced with death, we have been conditioned to ignore it until the very end. Thank you for the links. It's helpful to be able to read about some of the issues we all have to deal with.
ReplyDeleteThank you for this post. I like to mix my quilts with my stories too...
ReplyDeleteMy mother was on Hospice for 3 years with the same staff..it was truly wonderful..Because she almost died 4 times before she fell out of her wheelchair and broke her neck on the way to lunchbunch...She was able to go to her own wake. A few months later, when my ALS husband needed Hospice, the same hospice refused to give me the same staff I was so happy with. I felt betrayed. Now I wish I had had death in my own family before I did my own hospice work...the depth of grief just cannot be explained if you have not been through it...xo to you.
I truly hope you'll be able to make a difference, at least in your own community, as you go into this aspect of your profession. We need educated, caring people like you to make the changes that are necessary for our future. Thanks for the links too, they look useful. (Trying to get my string blocks to the post office.)
ReplyDeleteI am so sorry for your loss but so very glad you were able to help your family navigate those deep waters. Since I have been living with and caring for my 96 year old father for the last 2 years, I know there is so much I need to learn since we are determined he will stay home! You know so much more about what goes on right before and after then the rest of us. Thank you for sharing the links with us.
ReplyDeleteKat, I'm so sorry for your loss. Thank you for a very important post.
ReplyDeleteThanks for sharing. Sorry for your loss.
ReplyDeleteMy mother died at her home nine months after being diagnosed with ALS. She declined all mechanical means of life support. No feeding tube. We had hospice come to the house. When she died, I and her two granddaughters were present with her. It was how she wanted it to be.
What helped me in this dying process was, that her doctor gave us papers to explain what the process was. Of how the body is as the stages of death happens. It was a comfort to know. I respected my mother's wishes. She never wanted the hospital and all that. She wanted a natural death.
I'm sorry for your loss. Thank you for sharing this information.
ReplyDeleteThank you for sharing your experience with us - for the joy that can come with being there for family, but also for the hardship of having to make decisions that we're often not ready for.
ReplyDeleteWe were able to "nurse" my mother in her last days, at home, with her husband there, and all of her children providing for her care - it's a privilege that was hard, but still was a blessing to us, and to my dad.
Thank you for the links. Thanks for the quilty goodness too!
I am sorry for the loss of a loved one. I know having you there must have been such a comfort. Thank you for this well written post and your sage advice.
ReplyDeleteYou are so right, and I appreciate you sharing that. ((HUGS))
ReplyDelete