No Altered Books — No Art at All


How does one continue to create art when a big part of your life is unraveling? I know some people find that art helps them work through their grief, but I can’t seem to make it work that way for me.

As many of you who read my blog know, my mother has Alzheimer’s. Two weeks ago, she took a dramatic turn for the worse, refusing to eat or drink for four days, until my father was finally forced to admit her into the hospital. I spent five days in the hospital with her, holding her hand, talking to her, talking to doctors, nurses, dieticians, physical therapists, coaxing her to eat and drink. It was exhausting. In the middle of three art projects, I have been unable to pick up where I left off since I returned home. My mind constantly goes back to her, weak and wasting away with no desire to eat or drink. Sleeping most of the day. Falling asleep as I try to get her to eat another bite of vanilla pudding. Everytime she reluctantly takes a bite, she makes a terrible face, as though I had just fed her the most horrible tasting medicine in the world. And then she closes her mouth and shakes her head no; I try again later and the process repeats.

The doctor says that this is a normal progression of her disease. Her brain apparently is not receiving hunger signals from her body and her tastebuds no longer recognize even the foods she once loved. I sit next to her while she’s sleeping, holding her fragile hand. She wakes up and looks at me; I wonder whom she sees. She smiles and says hello and tells me that she loves me. When the nurses come in to take her blood pressure, she accepts their good-natured prodding, then looks at me and winks. She’s humoring them, afterall. That spark of life and wit — I cling to it until it disappears.

Then they discharge her, saying there is nothing more they can do for her in the hospital. As they remove the IV and the foley bag, I feel like I am watching them remove her life blood, and I suddenly long for the soothing beeping and light from the LCD screen.

At home, she spends most of her time sitting in her lounge chair by the window, sleeping, while we flutter around her trying to do useful things. I stay at my father’s house for as long as I can, but soon I have to return to my job and my family and my life at home. I kiss her on the forehead and tell her I love her and wonder if I will see her again. I’m glad to be leaving, thinking it will bring some relief from the sadness, and then immediately regret the feeling. When I’m away, I feel as though I’m abandoning her; when I’m there, I feel helpless.

It’s hard to get into a routine at home. My brain is fragmented. I have to be “on” in front of 145 seventh graders each day. I have to grade essays. I have to plant bulbs. I have to wash dishes and pay bills and make sure my son does his homework. There is no time and no inclination to pick up a paintbrush or open a book. Those projects have to wait.

15 thoughts on “No Altered Books — No Art at All

  1. I don’t know you, I love art and found your sight, but I had to let you know that I am praying for you. I lost my Dad three years ago, in the same way you are losing your beloved Mom. It’s the hardest, cruelest thing to watch. Take time for yourself, your art and especially for joy. Be there for your Dad as that is the best thing you can now do for your Mom. Take help when offered, and remember you are not alone. Wish you could get my hug.

  2. I don’t know you either, but I wish your mother courage and peace in her journey and courage and acceptance for your and your family.

  3. Karen – I just found you through your work in the current issue of Artella, and I was so moved by what you wrote about your Mom in your interview in the issue. It was so touching. And you art in that issue is SO cool – I LOVE it! That brought me to your site and your blog and I love it all. And then to read wht you are going through — I’m just so sorry you are going through this. The only thing I can think to say is that you obviously have such a huge bond with her, and that she is obviously so alive through you and your art. I could tell that instantly when I read your interview in Artella — because of how you spoke of her — and that was before I knew she was ill. I imagine your art will be very comforting and important to you right now. Thank you for all the art you bring in the world. You are very inspiring.


  4. Dear Karen,
    Again you are in my thoughts and heart. Wish I could give you a hug too. My Mom is trying to care for my Dad as things get harder and harder. She is trying to be brave but it’s taking a toll. I’m looking into getting them some help because I live so far away and can’t travel at this time, not that I could do anything for him either if I were there, although I have some guilty thoughts about my duty as their eldest daughter. If I could get my hands around the gruesome neck of Alzheimer’s Disease I would rip it to shreds. No one else can fill the place a loved one has had in our hearts. Praying that God will help you and your family through this difficult time. KR

  5. Karen,
    I read your blog and was moved so very deeply. Your grief is so profound. I know grief all too well and i can tell you the “grief” work didn’t start until years later, speaking of art that is.
    Take care of yourself and the rest will follow, sending lots of peaceful vibes.

  6. Karen – Your work has inspired me to create my first altered book – a tribute to my friend’s Mom. I incorporated many of your ideas into my work. I cannot wait to begin another.

    I took care of my Mom when she was dying so I know that your life is fragmented and each day is so filled with a thousand things that must be done and only 24 hours to do them in.

    I remember most that I prayed for miracles – and many happened. Someone was always with me when I had a crisis. My Mom’s first great grandchild was born 2 months early – and healthy – so many afternoons were spent with my Mom holding her grandchild on her chest while they both slept on the sofa. I will pray for miracles while you and your Dad care for your Mom.

    Your art will only prosper from this time – work when you can – and don’t fret when you can’t. Realize your time away will bring about change in you that will magnify your art.

    The children you are teaching will learn from your experiences. My daughter’s fifth grade teacher cared for her mother until she died and the children in that class learned more that year about life and death and compassion and what it means to love. Those children are blessed to have you with them each day.

    Thank you for your inspiration – I will be praying for you. ME

  7. I have been reading your blog and admiring your work for awhile now. I have never commented but I just wanted to let you know that you are not alone. Although you are the only one who can go through this specific experience, there are others who are here to listen to your story and grieve with you. I just wanted to say that I think you are so brave and if I knew you I would hold your hand through this. My prayers are with you and your family. I am not one for many words and am not very good at expressing myself. I just felt that it was important that I reach out somehow and say “Yes, we hear you”. There are many listening.

  8. I feel your pain. I just recently buried my Dad (95) who suffered, no that is not the word,… he endured I suffered from senile dementia. My mother has Alzheimer’s and is progressing past the moderate stage. As she gets sweeter and more child-like, he became meaner and abusive. I am not sure which is worse. Both tear at my heart. I am relieved to be away from the pain but feel guilty for feeling relief. My brother passed away from cancer three years ago so there is not a sibling to share these complicated feelings with. I believe that the stress of my brother’s death hastened the deterioration of both my parents

    Lock your sights on every wink and smile. Let yourself focus on everything pleasant and happy. This is how I survive. The pain and horror of my dad’s last days is already fading as I remember the Daddy I once knew.

  9. I had a friend who worked as a hospice nurse, and she said the hardest thing for people with a dying family member was accepting that they were dying; even though they “knew” it, they were unable to integrate the idea with the rest of their ideas.

    A dying person has no need for (nor taste for) food, and making them eat when they dont want to probably doesnt help much.

    I think a non-instant death may be an interesting experience; one may reach new levels of understanding, of oneself and others, and their relationships. One might attain a new level of acceptance of life as it is — that’s what your mother seems to have– and acceptance that one is about to leave.

    Probably the family can do as much for each other as for the person dying, in both cases, being there part of the time, talking of good times together a sharing hugs and tears. Cry when you want, let everyone cry when they want.

    Best wishes to you all………

  10. everything is interconnected… and the ebb and flow can fly wider than usual at these times…you live your art… it is always at work… even when you dont have the impulse during this crisis.
    Another example of how little control we all have in our lives… perhaps that is why we are artists… we create our own worlds and put each element just so… a balance to count on. take care

  11. Karen, I went through a time where I wanted to throw all my supplies away. Doing art when “everything is falling a part” seems so trivial. We had taken into our home and family a starving baby girl born to a 14 yr. old girl while in Honduras. We were working through papers to complete her adoption, only a few months from returning to the US when the nations law changed, giving birth mothers up to age 21 to revoke adoption rights. We were forced to give her back. The mother then toyed with us for a year after returning, abandoned the baby again and said we could come get her. We had emergency papers from our US government to do so and the mother dissapeared with all documents. We had Cassie for a year- her first year. It was like a knife through the heart, but was healed by art. A painter in the past, I made my first artist book about the darkness, the grief, and finally the healing. My advice to you is to be brutally honest about the subject- you will see things differently as your soul pours forth. Allow that medicine for yourself. Not all art is bright and cheery. But for me, True art is honest. Blessings…A.

  12. Dear Karen

    How lovely of you to boeth about us – your readers – at a time like this. Thank you for doing that, but do give yourself plenty of space at this time to “sit with your Mum”, let the grief wash over you, just have some times when you allow yourself to feel bad – that’s OK. That’s good for your healing. It’s been a very long haul for you and your family and its OK to take time for yourselves just now. I’m sending love thoughts to you through all these miles, and thank you again for taking some of this precious recious time for your fellow artists. God bless. Betty Benjamin, New Zealand.

  13. i found your site while looking for assemblage artists. YOU INSPIRE ME TO GO ON LIVE A CREATIVE LIFE. i’m artist , writer and dancer. but i have stopped creating visual art because i needed to earn a living. so now, i teach creative writing in a university in asia. just this year, i was diagnosed with an unknown illness. so i decided to pursue art (something that i have long left in the margins) this year, to really live a creative life, so i won’t be saying i lost it all. life is too short. i’m greatly inspired by your work. and what you have written here made me cry. i knew there is hope. i’m still young. turning 30 this year. and you gave me that hope to pursue my life as i should be living it. thank you so much. i don’t know you but i’m grateful.

    i shall dance, write and make art starting today. by the way, i created a movement piece based on one of your doll series.

    you take care always. shanti.

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