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.