Fear, No Pictures.

I wanted to write a happy post today. I really did. I have procrastinated all morning. Watching old recordings on my DVR, bringing my free space to a respectable number again… trying to think of topics that work. However, the topic at hand has pursued me all week. Relentlessly. My guess is that all that therapeutic work is at play here: I am trying to avoid the inevitable, and it can’t be done. I’m scared, and there’s no getting around it. So, might as well write it out.

As a child, I spent years terrified of becoming an orphan. After my father’s death in a car crash, when I was ten, I was convinced that my mother was next. Every time she was late, every time she went on a trip, every time I didn’t know where she was… my mind took over and created scenarios that left me alone. Alone. It terrified me and probably contributed to lots of issues that came later. For years I thought that if I kept a close enough eye on things, Mom would be ok and we’d all be fine. That was my job as her oldest child: keep everything fine.

And now, here I am all these years later scared still, but none of those crazy fears came true. It was that monster none of us saw coming that came in and shook it all up. I’ve talked enough about Huntington’s and no doubt these blogs have become a downer for some, but this is where I work it out, it’s where I digest and regress through stuff, so might as well get on with it. My mother is 68 years old and she is dying of Huntington’s, not some disaster or unforeseen trick. She’s dying in her bed, with me and my sister, and those who love her, watching.

I got a call Wednesday that my Mom has been approved for Hospice House and that if I wanted, she could be moved there. Oh, what a decision. I totally expected that she’d be rejected and that these final weeks, days, who knows how long would be spent at Shuksan Healthcare, where she has been for three years. She liked it there, has chosen not to move elsewhere in the past, and the staff really care about her. They love her in fact. Frankly, the staff there has spent far more time with my mother over the last three years than any of her family has. There was no other way, and I don’t feel badly about that, but it is a striking reality of her final years.  So the option to move her was not actually black and white. I recently shared that one week ago I spent an hour and half lying in bed with Mom… walking in her shoes so to speak. In that time, it became really clear to me that where she is now is not the peaceful, calm setting I want her to have as her life ends.

Shuksan is such an alive place, a place for the living. They have pets and plants and endless activities, all designed to help residents feel independent, respected and active. My Mom is now past some of that. Respected is still key, but she has little independence (here I am, deciding where she will die! How’s that for loss of independence?); she has not left her bed in nearly a week and she is not really eating. She is dying. The thing I most feared all my life, is here and it is not at all what I anticipated. After years of fearing the bogey man, she’s dying in bed of an illness I can’t do a damned thing to prevent.  And while it’s been years of seeing her decline, now it all seems to be happening too fast for me and I don’t really now how to keep up.

I’m scared all over, but  the fear is real and the picture is clear now and I’m just working on getting through it in the best way for my Mom. I tried asking her if she wanted to move to Hospice. I explained that it was beautiful (it is) and that it was really peaceful and lovely (it is) and that she will go there to die. Yes, I told her that part too. Then I asked her how she would feel about that. She replied simply, “I don’t really know how I feel about that actually.”  Well damn. Neither do I.  The staff at Shuksan were really sad and asked me to reconsider: that they’d give Mom a private room. They want to be there at the end for her, as they have been for these previous three years. They understand why I decided to do it differently. It’s not about them. It’s about Mom, and my family… it’s about us feeling like she is in the most peaceful place she can be when she finally stops fighting this battle of a life she’s lived.

The real bitch is that despite all my training, and despite the therapy and the support and all the discussions, I’m just terrified. I’m scared to move her today. I’m scared that she’ll be afraid in the new place. I’m afraid of what happens to her when she dies. (What do I believe in? I really don’t know.) I’m scared to take all the photos and pictures down from her room in Shuksan and see it empty. I’m afraid to sort through her clothes, which I know she’ll never wear again… even though she and I just went shopping and bought them together only two months ago. TWO MONTHS AGO. I just ironed all those labels on them.  We were shopping in Fred Meyers and I was complaining about how difficult it was to shop. Now, I have to pack up those same clothes and move her to a place where I KNOW she will die. Now I know she won’t wear any of the things we bought.

I’m pretty sure I’ve never typed so fast.  This is what they call a stream of consciousness. I will not edit this one, I will not add photos to make it look better. This is what fear looks like on the page.  This is typing through tears. It is me stalling as I prepare to go over there and see her at Shuksan one more time. It’s me afraid to look in the eyes of the wonderful nurses who have taken such loving care of her. It’s me stalling because I keep trying to imagine where I’ll hang those pictures at Hospice. Where will I put her plants that she was watering herself and taking care of, until just two months ago. It’s me putting off canceling her follow-up appointment with her orthopedic surgeon, because I ran into him last night and we both agreed there was no point in making her come to that appointment. She’s not going to heal.

I am just finding ways to keep her comfortable (thanks to much help) and make her ending as kind as it can be. Yesterday, I poured her a Coke (a real one, not the fake Shasta she’d resigned herself to) and she told me she would “kill for a cigarette.”  I have refused to buy her cigarettes for thirty years now. Refused. I have driven her to the store, but have not gone in and bought them. Now, I’m thinking of buying a pack of Marlboros and giving her this stupid thing she wants, with her Coke. Does it serve me, or does it serve her to see her die a non-smoker?

All of this scares me and I don’t know how to move outside my house today.  I’m scared of how I am going to heal. I’m scare of how this will all happen. I’ve actually said aloud, more than once and on these pages, that I wanted this to be over. I do. But that doesn’t mean I want to lose my mother. I didn’t want to lose her from the day I heard she had Huntington’s. I didn’t want to lose her from the day she told me my father was dead. It’s what I’ve feared for thirty-eight years and now it’s here. I’m going to have to face this and just get through it like lots of you have. I have gotten your notes and messages and I know I’m not the first person to do this. That does help. Thank you for reaching out and sharing those stories.

But right now, I know I can’t put it off any longer. Writing a blog post is not going to make that moment when she is gone any less real. I know that I need to go over to see her now and tell her that an ambulance is coming to move her. I need to collect her things and move them to Hospice with her.  I need to face my fears. This post is my fear, with no pictures. No distractions. This is what is real today.

About Dawn Quyle Landau

Mother, Writer, treasure hunter, aging red head, and sushi lover. This is my view on life, "Straight up, with a twist––" because life is too short to be subtle! Featured blogger for Huffington Post, and followed on Twitter by LeBron James– for reasons beyond my comprehension.
This entry was posted in Beauty, Death, Musings, My world, Parenting, Women's issues, Writing and tagged , , , , , , , , , , , . Bookmark the permalink.

9 Responses to Fear, No Pictures.

  1. There is never a good time for a parent to die. It is okay to be afraid. I’m an adult orphan as well. It is a huge milestone to lose both one’s parents. I was totally unprepared when my mother died in my mid 20’s. My father was almost 98 and he went into a long, slow decline and died in his sleep and we were all at peace with that transition for him – no fear, no suffering, nothing but a gentle transition to be again with his his wife of all those years.

    As to moving versus not moving. If she’s no longer aware of her surroundings then it probably does not matter. If she has preferences, then I’m sure you’d observe them as you love her dearly and want her to be happy – hence the cigarette/coke issue.

    Be kind to yourself. You deserve it.


    • Thanks Boomer. I am allowing my self to be reclusive and guarded right now… not as social. I’m letting friends help when they can and appreciative of that. So, I’m taking care of myself. It is indeed a tough journey and I appreciate all of the kind words and thoughts from friends and strangers alike. Thanks for reading the post and taking the time to comment.


  2. I wanted to drop you a line and let you know how moved I was after reading your blog this morning. My Step-Mother (who raised my brother and I since we were 5 and 8 yrs old) has HD. We just recently transitioned her into a nursing facility. I watched my father struggle for years to make the decision for her to go there. For so many years, I feel like we took for granted having her at home, and now I feel like we’re in limbo. I’ve had moments of uncontrollable sadness and tears, something that hasn’t welled up in me in a very long time. It will be the first Holiday Season without her at home, celebrating there is tough. She’s only 46 and therefore the youngest one at the nursing home. The first few visits to see her there were so hard to hold back the tears, but in reality, she is happier there than she has been at home for a long time. Rather than just watching tv all day while Dad works, she now has more activities than she can keep up with. I think the hardest part about the progression of the disease, is that it creeps up on you so slowly and then when you least expect it, it makes a jolting turn to the right. Being right in the cusp of the change is the most terrifying thing, trying to put on a smile for her, when your heart is aching calls for the kind of strength you don’t know is in you until you need it.

    Thank you from the bottom of my heart for putting yourself out there like this during such a hard time. You, putting your feelings out there like that is so brave and so inspiring to those of us who have a hard time confronting HD. It sounds like you have done everything in your power to make this a peaceful transition for her and please know that others in the HD community are thinking and praying for you, your mom, and your family.



    • Heather, I am touched that you found my post and took the time to comment. Yours is the first from an HD family, that I’ve read and very meaningful. I’m so very sorry that your mother is facing HD at such a young age. When my Mom entered the nursing home she has been in, she was not quite 65 and that was much younger than the other residents. The advanced stage of her illness made her seem much older, but it was still a bitter pill to swallow. While your mother’s youth is more typical of the illness, it is a shock to read about and my thoughts go out to you and your family. I have written several entries about my mom that might interest you. I think they go back further, but try starting with the Sept. 16th one (Ode to Birthdays Missed) that I wrote on her birthday. I share your sadness about the holiday (this will be a hard one, knowing Mom is at Hospice) and hope you and your family will continue to find peace as your mother fights this illness. It is a long, painful road, but there are some sweet moments along the way. My thoughts and well wishes will be with you as well. Dawn


  3. My thoughts are with you … may you find strength and pockets of joy as you tackle these difficult tasks.

    Your post, in all its stream-of-consciousness glory, was a beautiful reflection of your inner thoughts. You’re proving that “writing from the heart” speaks volumes…


  4. siyo2 says:

    You continue to amaze me. Don’t and ca barely realize how you find the time to get it all done and keep it all together. God bless you and yours, Best wishes for the hollidays & save some time for you. Namastay and Shalom………….


  5. Reblogged this on The Huntington's Chronicles and commented:

    Here we go folks. This is when it got real. So real, I could barely handle it.



Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s