The stuck-ness that is life..
There is little reward in being a caregiver of someone with a degenerative neurological illness. In fact most of the time it is draining to have to give so much. Lately I have been down, depressed with wintery blues and can’t get out of the funk of winter. I feel helpless and hopeless even when things are not. I can recognize this, seek help, take meds, make a gazillion cups of tea and still I will be stuck in the stuck-ness that is my life. I do things, I get out, I go out, I laugh and act like a normal person and then as day turns to night I slink back to my real world and am once again enveloped by the life of being a care giver. I feel sad and lonely even though I am seldom alone. Then a small tiny miracle will happen, not from friends dropping by, phone calls, meals out, flowers (although that is mostly what keeps me going) but Martha comes back. For the briefest of moments she is happy and we are happy together.
Days ago on a grim day with water pouring down, dark skies Martha wanted or perhaps needed to get out of the house. She does not often ask for much. I think as words leave her she loses the ability to ask for things, I demand answers of her and I shouldn’t but I do. But on this occasion she says “are we going out?” I don’t want to go anywhere. But to honor Martha’s diminishing capacity to ask for things I embrace what Martha wants. If she wants it, we shall do it. So I get out of my pajamas, which I have been in all day and we head out into the pouring rain, huddled under a tiny umbrella and into the car.
Where do you want to go?
She replies, jovial; I don’t know. We can just get a drink or some kai.
What do you want to eat?
We pull out and for the first time in a few weeks Martha looks accomplished, she has made an achievement and for that brief moment she feels victorious in her ability to persuade me to go out. We make repetitive chit chat. The weather is bad, it is raining so much, it is so cold. We repeat this over and over until we get closer to somewhere with food options. I’m thirsty Martha says, ok well lets get a drink. We carry this on until we parked. She smiles and it is bright and happy and enthusiastic. I am pleased, I am unburdened by her burdens and there is no more talk of people stealing her things, hurting her people or trying to capture her. She is content and so am I.
I take a moment to be grateful, I take the moment to thank myself for being able to do this for her and for me. I am grateful that for the first time in what feels like forever we have a moment of happiness to share. I tuck this into my memory bank as we order dinner, I watch in wonder as the world passes us by. We look like any other Mother and Daughter dining and yet we aren’t. Every 30 seconds or so I answer Martha’s questions, ‘we are in Auckland, we live here, you live with me’ I follow that with a reminder to stop talking and start eating. ‘I am eating..’ she replies grumpily, frustration is creeping back in for both of us. We finish our meal and head back to our world. I close my eyes as we settle in for the night, was it just a dream? Sleep finally comes to steal us both away and the next day comes far too quickly and we start all over again.
‘If you resist it, it will be cruel to you. If you let it in, it’ll be magic’