I know the soul is aided,
Sometimes by the heart’s unrest,
And to grow means often to suffer –
I’m not well, but when someone has to breathe for you daily up to and over an hour an a day using a ambi-bag, fitting over the face and nose, and counting off the seconds and making sure the air goes in and the air comes out, then not recovered.
If I have a regret it is that I feel ever more distant to the person I love most of all. I try to ensure her sleep, and exercise, and that she can do her work without worry. I spent my savings for a fall trip, as it is when I can best go out in the sun, and it be cool enough not to overheat. I spent it on her, and others, gifts for Cheryl and Rachel, and Christianne, and GirlwithCane, and the other names which should come to mind, but don’t. But most was for her, over a month in saving so she can have a fleece blanket for her bed. And a movie for us to watch together, called ‘The hole’, rated 12, it was from the UK, and a bit like the Goonies. She said she didn’t like it.
I hope I’ll try again. Except I’ve been waiting and trying for months and the most I know of her is that she says about the hour she kept me alive, which I am grateful is that ‘that was a wasted 90 minutes’.
The day I came home from the practice for the 10K, she left me on the floor, stepping on me, kicking me, angry. So burned with anger until she told someone at work and they couldn’t understand why she wouldn’t be happy. She shared how she felt with a person at work, and shared what she felt, and it changed how she saw things. With me, she just stepped on my hand. And then kicked me before she left. I know so much about her anger, and so little about her tenderness.
I wish with all my being, with all that I am that her feelings shared and so my knowledge was reversed, and that my heart did not beat with terror when she comes up, and looms over me, her forehead creased with her anger, until I can’t sleep anymore. Until I am always afraid.
I wait, and wait, for her to hold my hand during the film, during any film. I wait for her to hold me, to hug me from behind, to start with slow touches, safe touches, until my body is not scared of her. But she doesn’t come, and I only know her anger and irritation, and the pain she gives, perhaps not knowing, perhaps not caring, when she feels like that.
I get to eat once a day. From Sunday night until now it has twice been over 24 hours between meals. Sometimes I get a salad or sandwich.
There are all new workers, as 3 more, the last of the regulars, are gone. I got an emergency overnighter, so she could sleep full 8 hours to counter the night of helping me breathe. She doesn’t thank, she doesn’t tell me if she even slept well. The overnighter was something to be endured, no food, no coming when called. Like most workers now that the regulars are gone, I get the ones which are floating around, having been banned by every one else. And they wear me down. I don’t get enough sleep, I don’t get food,
I am lonely and desperate. When I get depressed, she gets angry at me, impatient, irritated that I have not figured out what I am supposed to do and done it. There is no flex which allows me to be ill or depressed, and she is gone again, counseling for her anger. She ‘lashes out’, she calls it.
I love her, I love her, I care about her, I want to comfort her, I want to support her so we have more ups than downs. I want to know her heart, and so I offer mine, daily.
I tell her how I feel. She tells me who she called. I tell her how things make me feel. She tells me what I should do, or have done by the time she returns. She is mean, and I don't know why. She says things or does things until I cry, and I cry almost every day.
This isn’t the caregiving story you thought was going on. This isn’t how I thought it would be either. She however is here, when Murray and Pat, my parents, and Peter and Susan, my brother and sister in law, are not. My parents do not call, do not write, do not email, nor does my brother and they have not for years, even when they lived in the same city - not once I got sick. Even in palliative state, the RN’s don’t come, care managers don't come, and they see getting me into palliative as a sort of dumping, yet nothing changes. No support for either of us I want us to just be able to talk, about what she thinks, about what she feels. But she doesn’t say that. And the dementia makes me feel more, and more, and she lashes out more and more.
I am proud of her: that she stayed when every other friend we knew left, including family. The Terry Fox two years ago was the last time I saw a glimpse of my parents. And going from a great job with benefits to limited unemployment, and then a temporary job with no benefits, she is still coping though when the pain medication doesn’t show for a week, that’s bad. But considering all that she manages, I’m proud of her by the day and hour, and as I see her test her own limits, or challenges herself to grow.
She gets angry at me, or worse, and more common now, simply stopping talking at all, and walking out, which she does so frequently during the small times we are together. Living with a stranger is hard. Hard when the only time I have seen her smile at me in the last three days is when she was showing me to a new evening worker, as she is big at being a ‘good person’ to outsiders. I want her to have time for herself. I want her to want to be with me. But that's her choice.
I can make the time, even arrange it so she has her time, but she hasn’t told me what she thinks or her heart, or what she feels about me, and life now and palliative and dying for several months. She asked me to tell her two things I wanted to talk about last week I think. The first was Palliative. But we never talked. And the champagne to celebrate the Terry Fox is still in the fridge. And the champagne for our anniversary is still on the rack.
It is hard to open up knowing that you could be hurt by that person, knowing you have a good chance of being hurt by that person. And I have hurt her in the past. And she hurts me every day. And I keep telling her my feelings and she keeps telling me the weather, and using my feelings to hurt me. And I haven’t said anything for years to anyone, because who would I tell? Elizabeth is the one with the public flaws, and Linda the saint – everyone acts like that is all it could ever be: Beth the fuckup, and Linda the angel. Not Linda so controlling that she tells me how I feel, tells me what I think, and goes two days without asking a single question about me, simply telling me how I am, who I am, what I feel, until I give up counting hours, encounters and days as her assumptions, so far off it hurts in the bones, tell me she doesn't want to know. And because she tells me that too, "I don't want to know." The Linda that stops me from speaking, withdraws care, food, medicine, pain medication, and ‘ssssssssssss’ over me if I try to speak.
It took me this far down to say her name. Linda. Linda my love. Linda my all in all. I know how empty my soul is. How is yours?
I tell her how I feel. I tell her that I am hurting. She tells me to shut up. I tell her I care about her, she walks out.
I want it only to be the time for us, to manage the duties and then throw the world away and spend time doing what pleases us, or just lying together on the couch. This is how the last weeks should be. I don’t know why things are so hard, why I got this disease, why I worked in the ONE country that doesn’t have a reciprocal agreement so I don’t get a disability pension, and can’t help her in carrying the burdens, to take them off her so that she smiles again. And so that I don’t fear her so.
It will take a commitment, and planning, and determination to be close and supportive as we once were. But then, all things that are worth doing together require that.
She is worth it, she is always worth it. If only she would take a chance too.
“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.”