Undone

My mom isn’t my mom anymore. Like a cicada at the end of summer, she’s removed her real self – her personality, her memories, and her ability to drive me crazy – and left behind a shell that looks just like her, but isn’t. Not at all.

The hardest thing I’ve done to date is to say goodbye and walk out of that room on Friday. Walk away, while she was shrunken and folded over in a wheelchair, absently picking at the purple and cream afghan she made decades ago. Walk away, when she couldn’t or wouldn’t respond to my “I love you” and my hugs. 

Also hard: sitting with her at dinner that first night at the nursing home. She wouldn’t respond to me, she wouldn’t engage. She couldn’t hold her fork and tried to drink out of her coffee cup upside down. I fed her soup and fish and pasta and peaches, all mixed in with my tears and my snot. (Sorry about that, mom.) When she was cold, I put on the only long-sleeved thing we thought to bring to her: a blue and white flannel pajama top, covered in stars. Christopher, don’t forget to bring her some sweaters, ok?

I am undone by how fast she’s come undone. Earlier in the week, she was talking (albeit only when someone asked her a direct question) and responded with “I love you, too” when I left her at the hospital each night. Now she barely nods or shakes her head.  She doesn’t seem to know who I am. When she does talk, it’s nonsensical words and phrases. She bites at her fingers and tells me they hurt because the orange snake in the backyard bit her. 

Getting her into a safe environment and into hospice care has been a nightmare, but she’s there now. Making the decision to put her into hospice rather than continue medical treatment that very well might not work? That really sucked. How can my brother and I decide what to do with the remainder of her life? How do we know what’s in her mind? 

I owe a huge debt of gratitude to the palliative care director and the hospice coordinator who helped us fight for what we thought was best for my mom. It was, they said, the hardest discharge situation they’ve had. I can’t thank them enough for their hugs, their counsel, their answers to my 8,492 questions, and their willingness to stand up against a doctor or two. 

The most I can hope for it to keep her comfortable and safe, for as long as she wants to continue living. I would love to think it’s going to be a long time, but I just don't know. It's up to her, now.  She’s been miserable for a long time and has made it pretty clear she doesn’t want to continue to fight. I can wish otherwise all I want, but I can’t ever change that. 

Comments

[Joan]

Oh, Jennifer. I am so sorry - I know how much this kind of thing sucks, and hurts, and the second guessing. I also know how wonderful a caring facility - and hospice - can be, and how much they can make a difference not only for a parent but also for you. I've been thinking about you all week, and while I'm glad to hear from you, I can only imagine how wretched you must feel. If there's anything at all I can do, even just listen while you talk, please let me know.

[Sarah J]

I wish there was something wise I could say, other than that you're a good daughter, fighting for what your mom needs. I wish you didn't have to have this fight.

[stylishboots]

I know there aren't words, so instead I'll just send hugs and strength and my best hankie. Please take care of yourself as well.

[Stephanie S.]

I am sorry. It's so hard when they're gone but not gone.

[Vicky]

I'm so sorry - what a terribly hard thing to go through. Your resemblance to your Mom shines through in those photos; I hope (in time, at least) that you are able to remember her as the great Mom she obviously was rather than the shell she is now.

[Jenni]

Nothing I can possibly say would be of any help, so I send hugs and love and lots of coping vibes.

[Lissie]

There aren't good words that can help, so just know that you are surrounded by love as you make your way through this part of the journey with your mom.

[Cari Taylor]

Jennifer, I am so very, very sorry you're going through this. My thoughts and love go out to you and Christopher, the girls, and John. Don't hesitate to ask if there is anything we can do to help. Words seem so feeble to offer but know that behind them is all the support in the world.

[Karen Jacot]

I am so sorry you have to go through this.

[kelliewg]

I can't begin to imagine, all of it. ((Hugs)). I'm so sorry. Any decisions that you've made or will make, I know are made with so much love, compassion and care for your mom.

[Lauren Supplee]

Jennifer, like so many good friends who have already commented, nothing I can say or do will make it better. But you are in my thoughts and I wish I could be there to make you food or hugs or whatever the moment needs.

[burghbaby]

I'm so sorry. There is no right answers, but I hope you know you are doing an amazing job of navigating a very tough situation.

[webhill]

I'm so sorry you're dealing with this situation, it sounds so very very difficult and painful. Thinking of you.

[Trina]

I have no magic words, only the conviction you have done everything you could to help your mom through this journey. I'm so very sad for you. Be good to yourself (that means sleep and wine and no beating yourself up). You are so loved by so many; I hope that brings you comfort.

[Tracy]

I'm so sorry. I hope somehow your mom knows just how much she is loved.

[Annalisa]

I'm sorry. I've been there in a different way and it sucks. Sending *hugs* your way.

[Jamie]

thanks for sharing this experience here. I don't know that i'd have the chance to know otherwise and i'm grateful that you shared what you are going through. beaming strength and positive memory thoughts your way.

[pam]

Having just watch my grandfather decline and then pass, I can only imagine you are going through a hyper intense version of that. I wish you strength, and patience and peace of knowing you are doing your best. Love and hugs....Pam

[Sandi_k]

Jennifer, I'm so sorry to hear this. Having been through something similar in 2010 with my friend, I know how heartbreaking, exhausting, terrifying, sad, and awful this is. My condolences to your family, and remember this: you're doing the best you can, and it's better than most. Your mom knew this when you were selected to be her proxy.

[Susan]

As many have said, there aren't words that could comfort you at this difficult time. Sending hugs and prayers to you and your family.