Death & Dying, Dementia, Mental health

The Color of Giving Up

What color is giving up? Black and white. And Grey. Deep purple on a good day.

What does giving up sound like? Silence. And nonsense. Paranoia and despair. And anger.

What does giving up look like? Well, that I can tell you more about.

It looks like an all-but-blind person boxing up her special tape player to return to the Library for the Blind. The one that has been by her side in her chair, in bed, at the table since she could no longer see to read.

It looks like a bird lover no longer thinking to ask if the feeder has syrup; maybe no longer caring.

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It looks like my fighter mother no longer insisting on setting the table or emptying the dishwasher because “it’s something I can do and I need to do what I can.”

It looks like my stubborn mother finally letting me cook her Malt-o-Meal for her, with “two Medjool dates each cut in five pieces.” (Control has not yet gone).

It looks like an old woman—who never even used a cane in the house—using a walker at all times.

It looks like my active mother—who has long bragged she has stayed limber by continuing to go up and down the stairs in the house several times a day—no longer using the stairs without help, and rarely at that.

It looks like a great-grandmother, who loves her offspring more than life, not letting herself enjoy the active company of a great-grandson who adores her.

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It looks like giving in without a whimper to letting me fully re-purpose the family room—my  previous partial attempts having been met with horror—to make a space for the active great-grandson, and for me.

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Piles of magazine articles and folders of collected quotes, greeting cards, craft ideas, sewing and typewriter supplies filled the room for decades. Clippings of family achievements and letters from children and grandchildren; thousands of slides and photographs of family, relatives, friends, nature, trips, and the house and valley view through the decades fill shoe and shirt and stationery boxes on cupboard shelves, two tables, a counter, two bookcases, the hearth. We have all tried many times to organize it all and help her with albums and scrapbooks, but no one has the time or patience to follow the life-consuming project through.

Giving up looks like no longer caring that the projects are not going to be finished in her lifetime.

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It looks like dementia finally settling into a brain, robbing her of reason, lashing out at those who love her and care for her.

It looks like not eating her favorite foods.

It looks like a forever lover of the wonders of the natural world giving away the kitchen-counter part of her heart-rock collection.

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It looks like giving up hope as she ceases the search for a cure for old age, that I wrote about in this blog in March 2013: Hope Dies Last. It was frustrating then, am I wanting it back now? Perhaps not, but wasn’t there supposed to be something in between?

It looks like nightmares of people—including those she loves—attacking her, her mother, her husband.

It looks like fear.

It looks like letting go, except not with intention or grace.

It looks like dark December of my mother’s 100th year.

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                                        It looks like sadness.

But still I cling to the hope of good days smattered among the bad. My work begins in earnest to help her find the light where we can.

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25 thoughts on “The Color of Giving Up”

  1. Gretchen…I was behind in reading your blog and after reading this post i feel so sad and just can’t stop the tears from flowing. Hugs to you and your mother as you carry on through these days where what used to be no longer is. May the Light of this season shed much grace on you.

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    1. Keep reading, June. She’s back to her normal crazy self :-). It must have been the medication, or that she cheated on weaning off of it when she decided she didn’t want to take it anymore, after just a month.

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  2. Hi Gretchen,
    It’s hard to embrace the change. The everyday that they once tackled is overwhelming. They are tired, frustrated, angry and scared. Taking it out on their caregiver is the only thing they know to do. It makes it hard for us.
    Next, the world just gets smaller. I find that my mother is happier & more content when I think within the scope of her smaller world & work within those parameters. Less is more. They aren’t necessarily giving up but have forgotten what they were holding on to.
    You are so important to your Mom even if she doesn’t say it. This change is still sad. I do enjoy the evenings when my Mom talks, even if she doesn’t know I am her daughter or what a daughter is. She knows I am hers & important to her . Thanks for all the beautiful pics you post & the honest outpouring. It is therapeutic. Peace be with you.

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    1. Pondering this, Robin. Her world is definitely overwhelming, but I don’t think she has been willing to take the steps to make it less so; at least in the way I like to think I would be able to do it. But it’s not my cruise. (I keep typing things here and deleting them.) I think she has not forgotten what she was holding on to. And she is pissed as hell that she can’t hold it anymore, and no one can hold it for her adequately. She would definitely fire me if I weren’t her daughter. I live in fear that she will fire her paid caregiver because of inadequacies my mom has invented and assigned to her.

      I am sorry to hear about your mom. I am lucky my mom still knows all her people. I pray that she dies before that part of her brain does. I don’t know if I could handle that. Blessings upon you. Thank you so much for writing.

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  3. Besides feeling this sorrow with you. You know, I”ve always held in the back of my head that the StellaJoe that I know and love would be there for one more visit from me, whether it was realistic or not. Besides the sorrow I was, of course, struck by the cruel irony, ironic cruelty, of finally getting what you’ve been fighting for and instead of leading to the kind of partnership you so clearly and beautifully sought, it being on terms that feel like really losing the person you love and watching them give up on not just the fight with you, which in its essence carried the spark of defiance in the face of death, but on life and love itself. This is sorrow with the sharpness of swords. I’m glad you have so many friends who understand what you are going through far better than me who lost my both my parents quickly and from a distance. But I’m here.

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    1. It seems like there are so many ways this could be easier, but we don’t choose our flavor of dementia. Or maybe some do, in any sense that we chose who we wanted to be long ago. I know there are some people for whom dementia changes their personality. I think that must be terribly difficult, or terribly lovely! My mom, though, is more of who she has always been, as I have said many times. Although, the sweet Stellajoe is less in evidence, less of the time. Everything else is Stellajoe on steroids. You are a comfort to me, Friend, and I know you are there. Thank you.

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  4. Oh, Gretchen…my heart aches for you and my dear Aunt Stellajoe. My father used to joke that we came from a line of long livers, and our kidneys weren’t too bad either. 😏 It’s not so funny anymore. Donald is miserable and difficult to deal with, Aunt Ruth is forgetting more each day. I’m convinced while it’s wonderful to live to be very old, quality is more important.

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    1. I am sorry to hear that about Donald and Ruth, Linda. It’s so time-warpy to read these letters from my mom, sprinkled with stories of your dad and Ruth and Donald. One foot in 1944 and one in 2015. Where are those people? And should these three still be here? What your dad said is hilarious! and, as you say, not anymore. Ok, still pretty funny. I love that you remember it.

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  5. Gretchen, as I watch my husband — frail and ill — I wonder if he, too, is beginning to give up. My heart is with you as you love and care for your Mom. It sounds as if she has had an amazing life, full of beauty. I’m so glad she has you and your sisters, grandchildren, and her super great grandson in her life as she navigates her days. Thank you for your lovely words of sharing.

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    1. I am sorry to hear that, Judy. I didn’t know. She has had a good life; I wish it didn’t have to end like this, for any of us. I’m glad to be here with her though, in it for the long haul, irritated as I sometimes make her. Blessings.

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  6. My mother wasn’t old — 78 — when she died, but a lot of what you wrote today sounds familiar, especially the paranoia, lashing out, nightmares, etc. In my mom’s final two weeks, hallucinations caused her great suffering. “You can’t see that strange man standing in the corner?” “All these children keep dumping furniture on me!” The most upsetting for her was when she imagined the police were after her, and she somehow dragged herself out of bed, even though she was weak and could barely breathe, and emptied and flushed the contents of her wallet down the toilet while shrieking in a total panic. The hospice team prescribed Haldol for her, which tamed the hallucinations.

    I’m thinking of you and sending peace and strength.

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    1. This should not happen to people. Or to those who love them.

      My mother claims to have hallucinations, but I don’t think she knows the difference between them and the nightmares that seem to accompany her nightly now. We have Haldol cream in our hospice crisis kit; she won’t take anything by mouth. She has had before in the hospital, my sister tells me, with a not-good reaction. But if we are desperate to keep her safe, it’s there. A tiny amount they tell us.

      Thank you for writing, Donna.

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  7. So poignant. I am praying for both of you, as you wend your way to the next phase of this journey together. You have been so faithful to your mom, and taken such good care of her. Though, and perhaps because, it has been hard at times, it is a great testament to love.

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