There is a glider rocker in my bedroom. It was what I used in the nursery where I would rock my children at night. For years, I sat in that chair and would rock and rock with my babies snuggled up in my arms.
I would look at their little hands and beautiful faces. The crease of their lips, the smell of their hair. Looking at them, feeling the warmth from their little bodies, wondering what they would be like when they grew up. What their voices would sound like, how their personalities would develop.
I used to rock, and rock and think how tired I was but how excited I was about what the future would bring. Soaking in the grace in the hope for the future.
Now, I rock in that same chair, only now I’m waiting for my mother to go to sleep. There are nights when she does but many more nights when she doesn’t. She desperately wants to leave to visit her mother who she thinks lives across the street. She thinks there are people she needs to entertain downstairs. Or she thinks she has lost something.
When the night stretches into the daylight and she is still awake I wonder how much longer she can be up. Wonder how much longer I can keep up with this pace. People speak about caregiver exhaustion like it’s a throw away. “Oh you’re up all night? Like with babies.” No, absolutely not like it was with babies.
Mixed in with my utter exhaustion is the rage over what this disease has done to her. How it continues to change and take more and more of her away. The pounding of my heartbeat in my ears does not help the desperate need to close my eyes. I can feel my body getting heavier and wonder how I can get up again and remain the chipper, happy, compassionate person to try and get her to lay down.
In those morning hours she is more like herself. She is talkative and agile which is the complete opposite of how she is in the daylight hours. It’s like she saves up all that energy and releases it at 3am.
People say “remember, like with babies, sleep when they sleep.” What they don’t realize is when you put a baby in their crib you know they will not move from that spot. I am dealing with a fully grown adult who can walk away.
For hours I sit in my chair and wait because getting in my bed to sleep is pointless. The sensor mat that alerts me when she gets out of bed has given me PTSD now. Falling asleep for a half an hour or twenty minutes does more harm than good to me, so I don’t bother. I rock. I wait. I watch old television shows I have seen a hundred times because they bring me comfort. I play games on my phone.
People may also say “what does it matter? you’re home.” But it isn’t that at all. It has sufficiently switched my schedule and made me an unwilling third shift worker, but with no pay. The way I feel during these times is just awful. I feel like my mind is shrouded in a fog. My body feels old. My back hurts, my legs hurt, I can’t even seem to move my arms like I normally do. I am nauseous all the time.
When I interact with my husband or daughters I have to tell them to slow down and repeat what they just said because I can’t fully comprehend it. I don’t even feel like I’m living. I am only existing.
And on top of it all I look at my mother, in such distress, and wonder what is the worst part of this insidious disease? On one hand, the fact that she may not remember the distress she feels in this moment thirty seconds from now is God send. But I know I won’t forget it.
And all the while I think about the research on lack of sleep, lack of “quality” sleep and what it does to your body. How it increases the risk of cancer, diabetes, heart issues, skin problems, not to mention you can’t think straight or remember things. I know my resting heart rate has increased over the last five years of in-home caring but really, how could it not?
And I am numb. Numb from the witnessing, numb from the doing, just plain numb. And I sit in my rocker and I rock. And I wait. Only now I’m waiting for my mother to go to sleep, and then I worry and wonder if this will be the night she sleeps forever.