G completely lost the ability to swallow by yesterday afternoon. He is home but hospice has taken over his medical care.
I spent most of yesterday on the phone, answering questions and dealing with other people's issues. At times I felt like I had no energy left for me. Luckily comforting words and hugs were available.
Today I felt I needed a totem.
Then I turned the phone off for a couple of hours and gave myself time to breathe and find that place of inner calm.
Sometimes the signs of change are there before us, but we are so wrapped up in our own heads, or in the minutia of life, that we fail to take notice. Sometimes we are momentarily blinded, but then we just adjust our mental sunglasses and continue on, caught up in our plans, only later noticing that the road has changed and we missed the turn.
Two weeks ago, a few days more perhaps, G did not recognize me. I knew it would happen. In my head I knew it, and I thought I was prepared. It is true, there had been days when he did not remember my name, days when he knew I was someone important but he couldn't quite say who, days when I was his mother or his first wife, or even perhaps simultaneously myself (his wife) and his mother. These confusions are minor things. The day I am speaking of was different. That day, not only did he know know that I was someone he knew and cared about, I was nothing to him. I was met with blankness: Not even fear, just a complete absense of presence. As far as he was concerned I could have been a chair. Worse than being a chair was seeing the empty eyes, the loss of someone I hold dear even as I touch his body, hand to hand, flesh to flesh; the sheer emptyness chilled me to the core.
Later that same day he was back, and it was if nothing had changed. But a change had begun even though I was not ready to recognize it. I had looked into the eyes of the future. Since that date G has been declining steadily. There were some bright moments, moments I would cling to like an impossible dream, but they did not last. I went to Texas and had long coherent conversations on the phone with G, conversations such as I hadn't had in over a year. I was told about the wonderful dinners he had with family in my absense. I came home to bright welcoming eyes that filled my heart with joy, and I told myself that I had been over-concerned.
My joy was short lived. It is as if some part of G knew what was coming. He had been having nightmares since that terrible dark blank day, as if he felt the edges of darkness creeping in as he struggled to keep them at bay. Some inner portion of himself had to put up one brave final front, muster all his mental forces and fight back, and so he did, for a few days. But then, I was back, he was relieved and spent, and the battle lost. It would have happened regardless of whether I left or not. It has happened before, these momentarily flashes of brilliance where the man he once was shines forth, before sinking beneath the waves. You would think I would learn, that I could see that this was just the eye of the storm and worse was yet to come. But I am human and I never see, except through the retropsectoscope.
Last July I learned that G was losing the ability to swallow, that we would have to shift to soft foods and that eventually even that would become impossible, that he was beyond the help of therapy. At yet we managed well for 9 months. Yes I pureed most of G's food though occasionaly he would eat a regular meal. We were doing so well I had forgotten the despair (only hinted at here) following that diagnosis. Apparently one can only outrun the devil for so long.
It is dinnertime, and I am sitting at my desk writing this as I eat, sitting here eating by myself listening to S prompting G, helping him to eat his dinner, talking him through the process we take for granted, of eating and swallowing. Is this the first of many such meals? What does it mean to be eating the same meal, in the same house, and yet separate? Meals were one of the last things we could share. Now even that may be gone, and if I feel profoundly alone in this house filled with memories and voices, how must G feel? I have memories. I have myself. What does he have? Even memories seem to be as will-o-the-whisps, to vague and fleeting to grab hold of.
For the last few days meals have been a trial. I ate. I attempted to talk G through eating, showing hime how to swallow, talking him through the steps, but he would get too worked up when I prompted him, too worried about doing it wrong, too afraid of disappointing me, clinging to me like a life raft in a turbulent sea, fighting so hard he could drown us both. His aide could help but my presence was a detriment to progress. I would have to leave. Today was impossible. And so I am here at my desk listening to the slow motion train wreck occurring down the hall.
I don't know how to get through the static. I don't know if it is possible. Perhaps all that is possible is to treasure the lulls in the storm.
Sometimes something happens, nothing really, just a small thing, but your world seems different. If you are lucky your world seems brighter. More likely it feels like everything is crashing down around you. You are upset. You may put on a brave face. But then, unexpectedly, when you find yourself alone, you cry.
Somewhere in there you see that nothing has really changed. The world goes on just as it did before. Dinner still needs to be made. Dishes need to be washed. Teeth must be brushed. Pretty toenails still make you smile. All that has changed is your perception. Maybe there were just some things you didn't want to see. We all live with our illusions. We all live with expectation. It is easy to think that if we do all the right things it will all work out in the end. Our expectations and illusions are like a mirror, showing us the world only as it reflects our own thoughts and assumptions. Sometimes the mirror needs to be shattered.
Last week was not such a good week. I'm not ready to discuss it, but it is there, that paradigm shift. Truthfully nothing is new, I was just forced to look at things differently. I did not take it particularly well. We humans are fallible that way sometimes. And yet it is possible that being forced to see things differently is actually good. Perhaps seeing how things are rather than how you want them to be is also good.
Objectively I would have to say that things are better this week than they were last week, and the changes made were all for the good. That doesn't belittle the process, make it less painful, or make it easier to accept. Finding the path to acceptance seems to be one of the harder lessons of life.
I'm still working on that one.
Friday was one of those days where I just couldn't settle down at my desk, couldn't focus my mind, jittery and distracted. Of course I found other things to do instead, I went out to get the new slippers G said he wanted then went to Hobby Lobby and bought a plate stand. Later, when G was out for a walk, climbed up on the step ladder and put a large plate that will not fit in any of my cabinets up top. Storage as display.
Some days are just like that. Some weeks even, and you learn to cope. Little things help. I made myself a mocha to start the day rather than my usual plain unsweetened black coffee. By breakfast I was already tired, already frazzled. G and I had been up since 5 and he was mad at me, mad at his aide when she came in, probably most of all frustrated and angry with himself since his mind and body weren't doing what he wanted them to do and he wasn't able to express himself in a way we understood. The hostility, the anger, this is all just part of the disease. One might think "this is not my husband" and in many ways it is not, it is a symptom of neurological paths gone horribly awry, and yet one must live through it and try not to take it personally. That part is sometimes hard. What the brain knows can still cause the heart distress, even when the heart knows better. Besides how do you explain to a man who is sitting on the bed screaming that his feet can't touch the floor and that he can't put his slippers on , that his feet are on the floor quite firmly and that he is, in fact already wearing his slippers, and that he put them on himself. How to explain that he may in fact be standing up while he is screaming that he can't get out of bed.
By breakfast he wasn't speaking to me or to his aide, just muttering a steady stream of swear words and glaring at us. The mocha was good. So was hiding. Sometimes absence is the best solution. Or joking. We joked that we should start a collection for the aides. Everytime G used a swear word he would have to put in a quarter. I would have to buy rolls of quarters by the gross. Later, when G saw the new slippers he threw them across the room, once again swearing, "I don't want anything that woman gets for me". This is why I waited until he was out to put things away.
By the time all the early morning drama was coming to a close and we were entering the wall-of-hostility phase, my hair was frizzy and I considered just opting for a tee and yoga pants and admitting defeat. But I wanted comfort and color so I grabbed the first bright things that caught my eye in my closet and ended up discovering another favorite outfit. There is nothing quite like dressing up when the road is hard, or dressing to satisfy your inner three-year old.
This is the same purple silk Ralph Lauren blouse I posted before, worn with J Crew Cafe Capris from last fall and purple Moschino ballet flats that are several years old. In the fall I wore these pants with boots and a sweater, but I hadn't worn them since moving to Knoxville, I think they are perfect with the long blouse and the delicate flats. It is true, that the long straight top with the cropped pants accents the fact that I am long of torso and short of leg, but so what. I am long of torso and short of leg. And yet this is everything I love: narrow pants hovering around the ankle (yes these are a little shorter than that), long tunic top, simple flat shoes, color. I assume you are picking up on a trend here. I certainly am.
In fact this outfit reminds me of my favorite gardening outfit, something I wore for years back when I spent a lot of my time out working in the garden. In those days I wore something called Japanese gardening pants, which I initially purchased and later copied. They were full and straight and loose and gathered at the bottom, just at the top of my ankle. Sometimes I wore loose straight leg jeans or painter's pants, rolled up or chopped off, again to the top of the ankle. I had some cute little canvas flats shaped like a ballet flat with rubber bottoms and toes, and I always wore G's old scrub shirts. I could spend the day in that outfit, day in and day out, only changing if i had to leave the house. This is just an updated version of the same thing and obviously an essential part of my own style.
As for the hair, it had settled down quite a bit by the time I got around to taking the pictures in the late afternoon. Starting out you can imagine Sonia Rykiel with shorter hair and you would get the basic look. At first I wasn't happy but then I decided I had to own my hair. I opted for a much brighter pink lipstick than I usually wear. I rather liked the effect. It made me feel intentional, as if I had planned to frizz my hair out to the skies. I suppose even bright pink is still just pink; its impact is still somewhat subtle. But it made an incredible difference in my attitude. Bright. Pink. Must. Remember.
Oh, and things did get better. Saturday morning the aide was in tears, but G and I had a good time Saturday afternoon. I took him out for lunch and shopping, exploring some of Knoxville's finer men's establishments. He found something he wanted, although we had to order the right size, and equilibrium was restored.
Have a great Monday. If you have a chance pop over to Patti's blog and check out what is going on at Visible Monday.
photo of japanese gardening pants from here.