Every day as I look after Mom I live in a state of limbo between death and life. I know Mom is going to die sometime in the future – probably sooner than later. I watch her slowly deteriorate as if she were a slowly deflating helium balloon. But then there is always the possibility that a proverbial pin will puncture the balloon in one single deadly instant. And when will this happen, and how long will it go on? Questions I cannot answer no matter how much I wish I could.
I am experiencing anticipatory grief – that feeling of loss even before a death occurs. I sometimes feel it must almost be as bad as the actual grief at the time of death. It certainly consumes me like it is eating me from the inside out. I wrestle everyday with thoughts of fear, great sadness, worry and I am in a constant state of suspense. I am in the middle of a living horror movie knowing it will end but not knowing anything else about the details.
I am on constant alert. I call it being “hyper -vigilant”. The constant alert goes to HYPER ALERT when something happens to Mom to indicate there is a change for the worse. This happened this week. Wednesday, our caregiver came downstairs to tell me that Mom was in a confused state, unsure of what was happening. She was also needing her nitro spray often and hours later Mom confessed she had been having pain down her left arm. I struggled to know what to do about going to work. Should I go or stay home and watch Mom? Mom assured me she wanted me to go to work so reluctantly I headed off with phone around my neck in case she phoned. I silently worked away at the library putting books away the tears close at hand. I wanted to run home and hug Mom and make sure nothing happened to her. Yet, when I left at the end of my shift I was afraid to go home – afraid of what I might find. Constant limbo, constant suspense, constant alert.
Mom has been with me for over 3 years now. 3 years of living in limbo. Three years of not knowing when or how. It wears you down and after a session of being in HYPER ALERT I just grind to a halt. Managing what I need to do for Mom is all that gets done. The rest of the time I am in my easy chair rocking, rocking…. trying to get back some semblance of normalcy, a daily simple rhythm again. It may take days to get to this point. And then in the facade of normalcy I wait… wait on tenderhooks for the moment something happens again to send me hurtling back into HYPER ALERT.
Being autistic does not make this any easier. In fact, it makes this life much more difficult. We like order, we like sameness, we like predictability. I live with none of this and it wreaks havoc on my body and mind. When I worked in the school system, I worked with one young autistic boy who used visual aids extensively. He had pic symbols across his desk to outline his daily routine. Preciseness, predictability and knowing what was going to happen next determined his whole emotional well-being. I made sure his symbols accurately detailed his day, I gave him 5 min. warnings when things would shift to the next symbol. I did all the things I needed to do to keep this boy on an even keel. I even had a magic card – the CHANGE card. I would quickly switch it in if there was an unexpected change in the day and then talk about the change with him. Most times the change went smoothly with this magic card.
I WANT THAT MAGIC CARD! I want someone to hand me the CHANGE card when something is going to change in my day. But I don’t have that magic card and neither does anyone else for me. There are no warnings, no alerts across the TV screen, just this sickening sense all the time that my whole life can change at any moment and I can’t do a thing about it.
Grief – we think of grief when someone dies. We don’t think of grief before someone dies. But it is just as real, just as potent, just as relentless. It puts your life on total hold. It’s called anticipatory grief. Harriet Hodgson wrote an article entitled, “Why is anticipatory grief so powerful?” You can probably google it but it was on http://thecaregiverspace.org. I leave you with a quote she says, “If sudden death hits like an explosion, knocking you flat, then a slow decline arrives like a glacier, massive, unstoppable, grinding you down.”
I am out of strength. I am spent totally. But I have a God who gives me the strength that I do not possess to keep going day after day for as long as necessary. His power is made perfect in my weakness. And as long as I have my beloved, precious Mom with me I know my God will carry me through what I have to go through. He does not promise to dispel the despair we suffer but he does promise to walk through it with us. He is my ENOUGH when there is no answer, when there is no predictability and when I want to quit.
Time – precious thing that it is, keeps ticking. The angel in my photo at the top is holding onto a clock. Only God knows the time Mom has here on earth. We watch the clock sometimes wishing it were over and at the same time wanting time to go on forever. That’s anticipatory grief. There’s no” time timer” ( a special clock to use with autistic kids) here to see how much time we have left. Each moment with Mom is a precious moment. Today I gave her a bouquet of dandelions. Their bright yellow bobbing heads the ultimate mother’s bouquet from her dear child. Will I ever have another chance to give her this precious little bouquet? I don’t know but I’m not taking a chance on time stealing my opportunity. You really do live as if each day is the last one. I live this out in real time but this story could happen to any one of you. A loved one could die in an accident or have a massive unexpected heart attack. I appeal to you, no matter what you do remember life is fragile. Despite going through this living hell of anticipatory grief I am still thankful that I at least get to go through it knowing I can make a difference in the time I have. Make sure you make a difference in the time you have with your loved ones.