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I have been away awhile. I'm not even sure how long. I think I dropped out half way through July with no excuse other than wordlessness. I seem to be going through another phase of muteness, that shows no sign of letting up, well, maybe it does as I am actually hoping to fill in a few days of October today. I must feel that I have something to say. Or maybe it's just out of desperation. Maybe it is because I am scared of writing and scared of not writing. I really have to get over myself. Like now.
I went visit my Mom yesterday for the first time in a few months. I feel an enormous sense of guilt that I do not see her more often, but then when it costs over $150.00 just for the gas and ferry transportation alone,it really limits what I can do.
Anyway, her condition has worsened over the last several months. She looks as if she is fading away, she is losing so much weight, which is not entirely surprising since she often is unable to eat because her face is so frozen that she cannot open her mouth.
As if it wasn't difficult enough when she was going back and forth between dementia and lucidity, now she seems firmly entrenched in dementia. I think this, but I don't really know. What she tries to say does not make sense, she twitches and her faces grimaces with her mouth clamped shut, yet as her family, as her flesh and blood, I can't seem to help feeling that she is trying to communicate with me. In my more rational moments, I think this is crazy, and tell myself, she does not know what is going on. There is nobody home.
She is disoriented, and she doesn't know who she is, or who I am. I am quite convinced of that when I sit with her, and try to get her to look at pictures and tell me who the people in the pictures are (even though she can barely speak through her clenched teeth) as she picks at invisible things in the air. I should know better, I recognize this behaviour I have seen it a million times before, it even has a name. But, on a rare moment when I look into her eyes, I think I see something.
I sometimes think I see something so alarming that I have to look away and focus on cleaning her fingernails that are long and packed with unrecognizable gunk. Or I comb her hair,wash the pureed peas off her cheek.
My siblings still believe that she recognizes us to a certain degree. They are convinced that since my brother, who lived near her and was visiting her several days a week, moved farther away, she has declined into a sort of oblivion of abandonment. That she is so distraught that she can no longer hold on to the bleak reality.
I, in true form, do not know what I believe. The medical environment in which I have been immersed for the last 8 years or so tells me to think that things have happened in her brain that do not allow her the ability to understand what goes on around her. She may be able to recognize things as familiar, but she cannot really comprehend 'relationship', so a face does not necessarily register as 'son', but more as 'familiar person who gives me food and companionship'. Yet her doctor, a medical professional, still is able to help maintain familial guilt.
Her doctor told my brother, when he asked advice on his impending move, that my mother's condition would likely deteriorate if she were left where she was and my brother was no longer there as often as before. This even though she has two companions who visit daily have done so for at least 7 years, and their faces are probably as familiar to her as family, (several who can only visit once or twice a year). Way to lay on the guilt there doc. My brother already feels guilt about keeping his family there as long as he has.
So there is the purely medical rational side of it, and then there is the 'other' side. The side that makes us think (and the doctor planted this seed to a certain extent)that although she seems far, far away and cannot do any of even the most basic things to take care of herself, and cannot carry on a conversation, somehow knows who her kids are and is very aware of when they are, or are not there. The side that makes me think slightly paranoid things like her behaviour seems way more "out there" when family are visiting.
What I mean when I say her behaviour seems different when family is there as opposed to others, like her companions, is this. When I read the notes from her companions in her daily "diary", it seems that even recently she has days when she is eating voraciously and with no difficulty, and is described as being alert and lively and fairly content to have tea and a snack out in the garden. Yet when I was there both in May and a few days ago, upon my arrival she immediately plunged into an innacessible oblivion that appeared almost orchestrated.
I have a problem. I can't stand not knowing stuff. I am addicted to information, particularly about writers and artists, and feel like I will never know enough. It is ridiculous and irrational, and will probably kill me someday soon.
I forget what I was reading a few days ago, but I came across the adjective "Ballardian". I had no idea what this meant, so, of course, I "googled" it and discovered that it is in reference to the author J.G. Ballard, with whom I am not familiar. It took a total of 4 minutes to discover this information.
So if I needed information on something I was reading about say, 10 years ago, what would I do? Look it up in an Encyclopedia? Go to the Library? If it is something contemporary, I'd wouldn't find it in either place. Things I search are often music related. If I look up a new band or musician that I have recently discovered, all their information is immediately available.It's amazing to find out history, bio, discography, everything in about 10 minutes or less. All this information is certainly useful, but does it really make me smarter, or just more knowledgeable?
I love this time of year. Everybody is griping and grumbling and lamenting the end of a summer that they complain never really happened at all. I am walking the streets with a great big smile, enjoying the crisp air against my face, and the song of leaves under my boots. I even welcome the rain, as grey and desperate as it can be at this time of year. A favourite is a long walk in the feisty rain and wind, and then to come inside, dry off and wrap myself in a soft, warm blanket next to the fire.
I think I am opposite to many people in that this time of year inspires me to release that which is no longer needed and to clean and organize my surroundings. The spring cleaning idea, except in the Fall. It just feels right to me, it feels like the end and like the beginning.
Perhaps it is not so opposite after all. I am remembering some of the Pagan and Wiccan literature that I have read, and this is the time of the year when things are ending. When the earth is going through it's dying, and preparing for rebirth.
I forgot to mention how beautiful the full moon was this month. And it was a perfectly crisp Autumn evening to be able to enjoy the full power of it's light. I don't know what it is with me and the full moon, but I seem to have an obsession with it that I have not encountered in too many other people, except Wiccans and Pagans (although I don't know too many people that call themselves such). It has been a lifelong thing. I did not just develop it in adulthood, it used to keep me awake as a child.
I remember going to bed as a child when there was still light in the sky. Nights when there was a full moon, I would often wake up suddenly,mind clear as a bell. I would see the strange light through the curtains, and needed to get up and look at it. I really had to feel it's light on me as I intuitively believed or knew that there was some power in that. This intuition was tempered by a self-consciousness that stopped me from actually going out and lying in the grass, as that would be too "strange".
A strange time. I saw my mother 15 days ago, and was shocked at how much life had drained out of her. I asked my brother to pull her "advanced Directive" out of the file as I believed the time to make decisions was drawing near. I had no idea how near it was. Last night I got a call from him saying that Mom had "taken a turn", and the staff at the care home thought she might have aspirated some food. Her temperature was up and she was having trouble breathing. I feel that the end is coming.
Although Mom's companion felt that she was rallying on Saturday morning, and she had even taken a bit of fluid (which they shouldn't have really given her...), my brother and I still felt that somebody should get over to Victoria to be there with her. He couldn't make it until Monday (today), so I said I would go. I am so glad I made the decision to go. By the time I got to Victoria on Sunday, there were several messages on my voicemail from my brother saying that Mom was now on oxygen and morphine to keep her "comfortable".
My brother and sister are with my Mom now, taking turns with the day and night shift. I've been over there and back twice, just staying for the day, as my life does not really allow me to stay for longer than that. Amazingly, after 6 days without food or drink, her heart is still beating as strong as ever. She looks to be weighing in at about 60 lbs, with very little flesh on her bones, yet something is keeping her alive.
Yesterday, my sister and I discovered that we are both trying to figure out what it is.
My sister and I had both told my Mom, as soon as we arrived at her beside, that it was O.K. for her to go, that she did not have to worry about her "kids', that we were all adults now and able to take care of ourselves. Apparently we both thought that this might be what was holding her in this world. Her body seems to want to go, refusing nourishment, but her mind or spirit has another idea. I think we are looking at each other, wondering who is holding on to her, who won't let go.
My bet is on my brother. As difficult as it has been for him in the last 7-8 years being my mom's main caregiver or guardian (she is in a care home with Parkinson's and dementia), looking after her affairs and visiting twice a week, I think he is afraid to let go of this. In his position of eldest son and responsible one, he has been in a position of power and importance in the family, and I think this has given his life added meaning. He has also become quite attached to Mom, in an expected way.
My sister and I did not have time to discuss too many theories about what Mom was holding on for, as we stayed with her all day, and we did not want to discuss it in front of her. We were able to quietly consider a few possibilities, but we had not even thought about my brother yet.
And, of course, what we did not even consider in all our selfishness,was that maybe it has nothing to do with us at all. Maybe it is her own guilt, which she has stubbornly held onto for more than 50 years.
What keeps somebody in this hard-edged world when their body is disintegrating, and there is nothing physical left that should rightfully keep them alive? The people that have known my mom for the last few years say it is strength of spirit. Why don't I automatically accept that? Why do I believe that it is a running away from something instead of a struggling toward? Because I don't understand what there is to struggle for. Life is sometimes not the only answer. Maybe she is waiting, not for forgiveness, but for somebody to tell her it wasn't her fault.
My Mom died today. I got a call from my brother at about 5:00 am. Of course, as soon as the phone rang I knew who it was. Strangely, I had just woken up out of a very deep sleep minutes before. She had been having a harder time breathing since yesterday, and my brother said her hands and feet were getting colder. When he left last night, he thought he heard the beginnings of the "death rattle". I guess he was right. As her struggle increased, they gave her oxygen, and fairly peacefully, she took her last breath.
The day after. I feel a strange elation, and at the same time, fear of what might be to come. I think I'm a veteran of grief because I survived my father's death (something I was not entirely convinced I would be able to do), yet knowing that this one is going to be different. Of course. They are different people. But not just that. There is a whole different corporeal connection. The whole idea of spending all that time living within the rhythms of her body, being fed by her blood. How can you not be affected by that?
Today is the day of the dreaded Catholic funeral. My siblings and I were in a quandry, trying to decide whether to go the Catholic route, or make it more of a secular thing. We all believed that even though she had grown up with Catholicism, and had tried to live within the restraints of that dogma, she had in recent years become disillusioned. She had also in recent years slowly become demented as well, so it was a bit difficult to divorce the one from the other. But her sense of betrayal had more history than her increasing bewilderment.
Another day after. This one less elated, but more settled. We ended up having the most stark of Catholic funerals. The funeral itself was incorporated as part of the days mass, so included our straggly bunch, Mom's little pine box thankfully draped in an official looking catholic robe, and the usual crowd of weekday churchgoers. My sister was terrified that she would not make it through. I was having terrible stomach cramps, and was afraid I would have to run to the bathroom. There was no music, just the words of the priest and the rote responses of the crowd.
These were some of the most beautiful days that I can remember, riding across to the Island on the ferry. It's such a dichotomy to be inhaling the beauty around me and being touched to my very soul by "Ol' Bloody Orange" playing in my ears, and all the time my mother dying in her bed. I didn't try to distract myself, it's like my body knew how to take care of me in a way that my mind couldn't. It just kind of turned a few of the circuits off for awhile, it intuitively knew what I could handle.
I am continuing to stay away from work, not because I can't handle it, or I feel that I would break down if I was there, I just don't feel that I have anything left over to give. I need what I have for myself right now, and it is not much. My job is not one that you can cruise through without engaging. I work with very sick and anxious people, giving them direction on how to take care of themselves after open heart surgery. You cannot do this without being there in the moment. You can't fake it.
I'm starting to feel very strange. There are moments when I feel sudden surges of anger,not in my mind so to speak, but in my body. It's like I feel a strange rawness in my chest, a pressure that makes me want to scream at everybody. And then it goes away, and I feel quite calm, strangely calm. Then I have moments of feeling totally bereft. Like when the light is just starting to go from the sky, I feel a wave of longing, and then an emptiness that I can only describe as a sense of utter loneliness.
The loneliness I described is even more intense today. I know I have felt this before, and it was a feeling that I ran from in any way that I could. I know it is a familiar feeling that I encounter every time I am going through a transition in my life. Times of change. The first time was when I was about 14, and starting to tentatively figure out who I was. I was reading a lot of Russian literature, and becoming quite disturbed by feelings that I think I can only describe as a kind of existential crisis.
I think before I turned 14, my life had been defined by my family, and to a certain extent by the beliefs of the religion that I grew up with. The two did not leave room for much questioning. But I was a very sensitive child, and I think as I tentatively ventured out in the world, I began to see and experience things that were very disturbing to me. I began to have very dark thoughts, and I seemed to be able to pick up feelings of fear and anxiety from other people. I felt vulnerable and completely raw.
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