There is an ache in my chest, which wakes my brain. It is not a physical ache, but an emotional one. My brain rouses my eyes and my feet slide out from under the warm covers to tiptoe to my computer…trying not to wake the sleeping dogs. It is a familiar walk through the dark house. I am an insomniac writer. At least when there is a lot on my mind, and tonight, or this morning I should say, my brain is full and needs the relief of being dumped onto the page. A title pops into my head and the words begin to flow. Compounded Grief.
I was surprised at the emotion that came today at the funeral for Jimmy. The tears themselves were not the cause for my surprise. It was a funeral after all. However, the reason for the tears is what caught me off guard. It wasn’t the loss of my uncle/cousin, rather the loss of my mom that set me off. The complexity and layers of grief are difficult to process and evidently, they wake you up in order to have their say. Compounded grief, just like compound interest, piles up. Just a little grows into a mass quickly. The more you have the more it grows. Add just a little and it builds momentum until it is hard to breathe.
You see, at funerals, friends and family show up. People you haven’t seen in years come to pay their respects. It is like a reunion in that sense. You rehash memories. You laugh and cry, together. That is the point, I think. To be together at a hard moment. It is a time to support the immediate family of the deceased, but also to share their pain. Sharing reduces the hurt for everyone, which is a beautiful thing.
Mom used to understand that. She would be the first one to show up to hug and care for the grieving…with a casserole in her hand. With Jimmy, we knew she would want to be there for Glenda. What we didn’t know is how she would react in her current mental state.
She didn’t know of Jimmy’s death until yesterday. When you don’t know how a person with dementia will react to difficult news, you hold off on delivering it. That is another hard part of this disease, the secrets you keep bottled up. Mom could fixate on it, or she could forget it. Most of the time she forgets…but every once in a while, she fixates, which can be a problem. At this point, she is not connected to the emotion as much. She will not cry. She will know it is a sad thing, but it’s like she doesn’t emote in the same way she would have before.
Melinda, Dad, the caregiver, and I showed up at 10:00 am to get ready for a 2:00 pm funeral. It takes several of us to get her ready if we have a specific time to be somewhere. The caregiver got her up and dressed, as she can no longer do the basics of dressing herself. The speed at which she moves is half of a snail’s pace. Her brain just cannot process all the steps to do even the simplest tasks.
Walking is one of those tasks. She can walk. There is nothing wrong with her legs, but she cannot move fast. It takes us reminding her to take a step sometimes to get her to move. We use a transporter chair to get her from place to place, but getting her turned around and seated takes much patience and many verbal cues.
Once the caregiver was gone, we rolled Mom to brunch and fixed her plate. Eating is another thing that takes a long time. She has to be reminded to take bites because she is easily distracted by things around her. It reminds me of when my kids were toddlers. After she ate, we got ready to get her in the car. Putting her in takes one of us holding the chair, one of us helping her stand, turn, and sit. One of us folding the chair and lifting it up into the car. It is a major deal. I honestly don’t know how Dad does it without us there. It is exhausting.
On the drive, she asked where we were going over and over and over again. Her brain was trying to process, and she said to me “something big is going on.” She was not upset or emotional just wondering what this thing was that got her family dressed up and, in a car, together. By the time we arrived, she seemed to know Jimmy had died and we were going to his funeral.
It took the three of us to find the best parking place with a ramp and to get her out of the car, into the church, and then out of her chair to walk ever so slowly to see family and find our spot. She prefers to walk once we get her places. However, none of this was what hit me. This is our regular life with Mom. We work together to care for her in whatever way she needs. It is exhausting, but also a privilege. It is our joy to love her like she has loved us for so long.
What got me was when she didn’t know people with whom she has shared life for years. I know there are days she doesn’t know me, but for some reason it didn’t register that this would be an issue. I knew she might be overwhelmed with the crowd. I knew she wouldn’t know everybody, but I guess I thought there would be more recognition than there was. She seemed to know Glenda, but her hug was stiff and not her usual embrace.
Her inner circle was there. All the women she has prayed with for decades. She smiled as we introduced her to her friends. She hugged them, because she knew she was supposed to know them. And I hugged them. And they hugged me. And I cried. And Melinda cried. And Dad cried. And they cried. We all miss her. And what is there to say. Nothing. There is nothing that can change anything.
The thing is, life goes on. There are funerals, and weddings and births and life just rolls on and on. Nothing stops when a family member has dementia. The outside world keeps turning while yours has stopped. To take her out is a major event, but to leave her behind is excruciating. It is to say she no longer matters. Or that is how it feels to me, anyway. She might not remember anything tomorrow, but we still want her to have a life. Friends. Family. I am sure there will come a time, maybe not too far away, that it will no longer be important, but right now it feels imperative to try to keep some connection for her…but also for us.
In addition to all this, to watch my dad grieve his buddy, Jimmy, and to grieve Mom while she is sitting next to him is also painful. To watch his heart break into pieces causes mine to shatter as well. His tears are mine. All our tears fall into the same pool.
The service was beautiful. There were serious moments, and many funny ones at which Mom laughed a lot. In fact, there were times I thought she might not stop laughing. Sometimes her reactions don’t match the circumstances and fortunately for us, her main disconnect is with laughter and giggling. To this point we have not seen the anger and agitation so common with this disease and we are praying that stays true to the end.
When Taps was played we all broke down. We grieved for Jimmy. We grieved for his family. We grieved for our loss of him. We put our own everyday sorrow aside for fresh pain. It was compounded grief. Tears on top of tears. Heartache on top of heartache. It is the layers that keep me awake tonight. So many layers these days. I am amassing a mountain.
Where is God in all this? Right next to us. He is our sustainer. The manna rains down from heaven each morning. Not enough for tomorrow, but just what we need for today. There is no gathering ahead, as we don’t know what tomorrow will look like. But as always, his grace is sufficient. His provision is sure. In the midst of our compounded grief, we have found his compounded grace. His mercies are new every morning…even the wee hours, in the dark house, surrounded by snoring dogs.