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.
Comments
18 responses to “Rainy Day”
I have no idea what to say. So difficult, you put it eloquently but so clearly painful. I hope you can continue on with the grace you are exhibiting now, but I have no words of wisdom to assist. I can listen, though, and do. K
I’m so sorry. I wish I could help. . . .You two have had such a rich life together, from what you’ve written here. As you say, some solace for you in that, but it must be impossibly difficult to have G still so near, yet so far.
Dear Mardel, I’m sorry to hear about this change in your life. Sending warm thoughts to you.
Mardel – what a beautiful, heart-wrenching post. Lord, what to say? You are going through one of the hardest experiences anyone could have. I am giving you all of my support vibes hoping (and knowing) that you will find some way to manage this untenable situation. Please keep writing (if that helps). I sense a voice is crucial in this phase of unmoored difficulty. You will get through this.
Dear Mardel–what a gift you have given us. To write so lovingly about such a sorrowful time in your lives reminds me to celebrate the many things I still can do. I’m sending you koach–strength. Thank you for this post.
…doing the only thing I know to do… to quietly sit and read your words and hear your heart… and continue to sit with you in this space…
Mardel, I cry as I read your words, because you are expressing all the thoughts I have been feeling for months with my own special someone. I lost this important person on 5 April and still feel it is not real. Thank you for sharing so eloquently your emotions and life.
Know you are heard!!!!
Humbled by your honesty and deeply sad to hear of your beloved’s state. Thinking of you every day as you endure this storm.
I’m sorry, I know this is difficult. Even if he doesn’t know you, your actions are showing him your love. Tell us your words, show him your care.
So sorry to hear of what you are going through. My prayers are with you.
Sometimes, you get through it one second at a time. You allow yourself time to celebrate the good minutes and time to mourn the bad moments. You take care of yourself so you have the energy and strength that you need everyday. One of the things that helps me when DH is having a hard time is to do something that brings me joy or peace such as reading or sewing even if it is only for a few minutes. Give yourself a hug from all of us.
I’m struggling over what to write, to say I care, that I wish in some way to share your pain and to support you at this difficult time. You are in my prayers. HUGS.
So near. So far. Tears. Know you have thoughts and support, if only through the ether of the Internet. You are not alone.
Oh dear, oh dear, oh dear. Will you be OK?
I think of my stepfather, and my mother in her decline. Not where you are yet, but I want to thank you for what you post because it’s good for the rest of us to share the process. Thank you.
Your great inner strength and great love will help you through this difficult time. Embrace the good moments as they appear. Prayers of courage for you and thanksgiving for the skills and patience of his caregivers.
I am so sorry, Mardel. Sending hugs, smiles and good wishes. I must also thank you for sharing here. Maybe some day we can get time for a visit. Until then please know I’d do anything I could to help!
I have absolutely no idea what to say, Mardel – my heart bleeds for you both. I just hope that knowing that we all care so much will offer you some comfort.
You are kind Mardel, to share your intimate experience with us. I don’t know G, but I know from reading your posts how much you love him and how hard this must be for you to endure. xoxo