The Long Goodbye

My mom entered hospice care this past week.  She has reached the point where she no longer wants to eat or take her medicine. She has stopped moving her body at night so she has begun to develop bed sores. It has just been in the past few weeks that she has begun to slip away so very rapidly.

She was first diagnosed with early onset dementia during my senior year of high school in 1990.

For twenty-two years she has been painfully aware of each new loss as the disease slowly took and took and took from her. She lost her profession as a registered nurse and later her ability to work at all. She lost her sense of smell and eventually taste as well. She lost her ability to drive, and with that her freedom. Recently she lost her ability to read, which is how she has filled her days for years. She has had to mourn loss after loss after loss. Dementia is insidious, relentless, and in my mother’s case, incredibly slow.

I had long thought I looked forward to her finally getting to the point where she had lost enough awareness that she would no longer be tormented by all of her losses. I thought it would be so much easier. And it is… for her. And for that I am thankful.

But I am finding that I’m surprised by how hard it is for me. I mean, I’ve know this time was coming my entire adult life. I thought I’d be ready when the time came. But now when I visit this shell of the woman that is my mother it makes me incredibly sad. She is so vacant. I sat with her today for an hour but she couldn’t carry on even the simplest of conversations with me. I held her hand and she didn’t respond. At all. It would have felt to same to have held an inanimate object in my hand.

I knew it was coming, but this is much harder than I had expected.

Eli, however, managed to get a smile out of her twice during our visit. She seemed to really enjoy his hug and kiss when it was time for us to leave. Yet she didn’t seem disappointed at all to see us go. After we had left it occurred to me that I’m not at all certain that she knew who I was. Today was the first time I’ve ever wondered that.

My mom with Eli at my brother's wedding,
May 2011.



  1. svsellers said,

    April 8, 2012 at 11:03 pm

    So sorry. xxoo

  2. ReStitch Me said,

    April 9, 2012 at 6:30 am

    I’m so sorry, Karen. We went to see my folks this weekend and my step-mom (really the only mom I’ve known) has Alzheimer’s. She too, was a nurse. My Dad is trying his best to take care of her at home for as long as he can.
    She is failing fast and I think it will not be long and she will either go to a nursing home or die. It is so painful to watch.

    I cried as I read your post, because it was similar to our family’s story. Your family will be in my thoughts and prayers.

  3. dawn aldrich said,

    April 9, 2012 at 7:28 am

    Karen, my heart aches for you. For so many years you and Kevin have been the parents to your mom and that’s a tough and emotional responsibility. May you both rest in the hope of Christ’s resurrection that this “stranger” will one day be fully restored and whole. What a day that will be when she calls you by name!

    “I will repay you for the years the locusts have eaten…” Joel 2:25

    Love and prayers,

  4. April 9, 2012 at 7:43 am

    This is a trying time for you. Treasure the small things – like knowing your mom enjoyed a hug and kiss from your son. It still means a lot to her, no matter what her state of understanding. You seem to be handling it as well as you can.

    • April 12, 2012 at 3:11 pm

      I like knowing I will be able to tell Eli when he is older and wants to know about his grandma that she responded to him even after she couldn’t really interact with the rest of us. He is very special to her, and I’m glad I’ll be able to tell him that.

  5. Kelley said,

    April 9, 2012 at 8:21 am

    I dont know what to say. I have never been in this situation. Stay strong.. thinking and praying for you


  6. Maysem said,

    April 9, 2012 at 8:23 am

    I’m sorry to hear about your mother’s hardship and yours as well. My father’s mother went through the same thing but she was diagnosed with dementia at an old age and she passed not long afterwards. In the end she didn’t know who my father was or anyone else for the matter. Since she wasn’t aware of her surroundings and what was exactly happening to her, my sorrow was more for my father because he was aware and I saw the sadness in his eyes. Reading your post brought those feelings back along with tears.. not just for my grandmother and father, but also for you and your mother. Your family will be in my prayers.

    • April 12, 2012 at 3:13 pm

      Sorry it has taken me so long to respond to the comments on this post. I appreciated you relating your own family’s experience. I’m sorry you went through his with your grandmother. Dementia is a horrible thing. Thank you so much for your prayers on behalf of my family.

  7. Erika said,

    April 9, 2012 at 11:05 am

    Karen, I am so sorry to hear of your pain and of how young you were when the symptoms began. I will pray for you and your mom.

    It seems silly after your post but I did want to let you know that I featured your clayboard drawings on today’s It’s a Wrap Link Party at Artful Rising. You are incredibly talented and thank you for sharing.


    • April 12, 2012 at 3:14 pm

      Thank you for your comment Erika.

      It was a bright spot for me to learn that you had featured the scratchboard drawings. Thank you for that. I’ll get that post updated with your button today.

  8. Inder said,

    April 9, 2012 at 2:21 pm

    Oh, this is so, so hard. I’m sorry. My husband and I are currently helping to care for my father-in-law, who recently suffered a stroke, and it has been incredibly stressful and difficult, although on a different scale than what your mom has been through. Your poor mom! Poor you! I’ll keep you in my thoughts and prayers!

    • April 12, 2012 at 3:16 pm

      Thank you so much for your comment, thoughts and prayers, Inder. I’m sorry to hear about your father-in-law.

  9. faerylandmom said,

    April 10, 2012 at 4:05 pm

    I am so sorry…so, so sorry. I wish I could reach through the internet and give you a hug, or bring you spaghetti or something. Visit your mother with you.

    • April 12, 2012 at 3:17 pm

      Such a sweet offer! Thank you, so much. It is amazing how much comfort these comments on this post have brought me, even though most are from people I have never met in “real” life. Thank you so much for being part of that. It has meant a lot to me.

      • faerylandmom said,

        April 15, 2012 at 8:23 am

        I’m sincerely glad. I kind of understand, because my dad was diagnosed 2 years ago with stage 4 malignant melanoma. Tumors, tumors everywhere, and we’re told this is what will take him. We just don’t know when. ((more hugs)) We’re all in this together…somehow.

  10. November 15, 2012 at 3:55 pm

    […] of you may remember a post here on Folk Haven last April called The Long Goodbye. My mother, who has suffered from progressing dementia for many, many years had just entered hospice […]

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