I read a blog that was circulating on Facebook. It was written to mothers to urge them to persevere through the fatigue and frustration of raising children. It said that, much sooner than you think, the kids will be grown and be off doing their own things. The house will be quiet and clean and you will realize how full life used to be. The nights of being woken up, the messy bathroom, the picky eater at the dinner table, and the endless questions are all part of the two-sided coin of child raising.
I had to giggle to myself because a great deal of the frustrations of raising kids are the same as caring for a family member with dementia. There are nights when we don’t sleep much. The bathroom routinely has to be freshened as potty training seems to go backwards. Meals can be interesting when she decides she eschews plates and silverware. And, the questions are never ending.
A memory of her yelling at me came to mind. She was mad and agitated. She told me how little I do for her, how I’m mistreating her, and how I’m the devil. Then, the comment, “You’re gonna miss me when I’m gone!” was hurled at me like a ball bat. Just a little suggestion, don’t insult someone and then try to make them see how much they will miss you when you are gone. It might seem logical, but it doesn’t garner the response you hope for.
Right now, in the thick of it all, it’s hard for me to see clearly. I am the first to admit it. I have trouble seeing the forest for the trees these days. The trees have thorns, acidic sap, and drop branches on my head. Back when we brought my mother-in-law into our house, we knew it would be hard, but we also knew it would bring positives as well. At least, we thought so, because surely it will, right?
It’s really easy to see the positives of raising children. Besides the hugs and love of a child, you get to watch them grow and become adults. They follow their dreams and you celebrate with them. As I read the blog, I had to dig deep to find the positives of caring for someone with dementia, especially now, six months into it.
The main reason we did it was for her. We wanted her to spend the end of her life in a normal home surrounded by family. No matter how nice a nursing home can be made, it’s still institutional care. No matter how much the staff takes their job to heart, they are still employees. Pushing aside the clutter of emotions I feel daily, I tried to think of what, exactly, we gained. This is changing us. That, I know for certain.
I had hoped the kids could have a closer relationship with their grandmother. It is, and it isn’t. She isn’t a whole lot like the grandmother they knew. Where before she doted on them and they could do no wrong, now they worry and agitate her. When they are loud or move too fast, it bothers her. If they make a mess, she wants me to scold them. If I’m not right there, she yells at them.
On the other hand, they see closely how we have to take care of each other. Not just when we are sick with a fever or break a bone, we have to take care of each other when we aren’t going to get better. We take care of each other when we are out of our mind, when we don’t make sense, and when we are mean because of a disease process.
Our culture has a model that babies are uncivilized and we tend to them as they grow in maturity. Children are expected to be in the process of growing up and adults are supposed to be calm and responsible. This gives kids the idea that they are given the free pass and adults should step up. Our kids, in our house, see that sometimes adults go backwards and we all have to take care of them. Our kids have learned they aren’t the center of the world.
I’m glad the kids are learning these things, but what about Nicky and me? How will this change us? We have both been through some tough things in our life. We both feel a sense of strength and perseverance because of the struggles life has thrown at us. When our youngest was sick with a congenital defect, we learned to have faith like we never imagined. In other struggles, we learned to become assertive, responsible, even fearless. Maybe all those things gave us the platform to accept this challenge of taking care of his mother.
I may not know how this will change us until sometime later. I know it’s the right thing to do and I know I can do it for as long as it takes. One thing I already know, there are so many others like us going through this. We knew some of our friends were going through it, but we had no bearing for what it meant to them. Just like when our son was diagnosed with autism and we found friends who also had autistic kids, we now see what our friends who have parents with dementia are going through. You never really know what someone else is going through until you are going through it yourself. There are things you just can’t talk about with everyone because it’s too upsetting or there are no words.
I will not miss taking care of her when she is at her worst. I already miss the anthology of a life that she was. I wish I could talk to her about when my husband was a baby. I wish she could tell me her memories of that time. I wish she could tell me about growing up in the 1930s and 40s.
I will not miss watching her grow backwards in maturity from an adult to an infant. I will, however, be more compassionate. I used to think I was compassionate. Like a child who hears of a tragic war story and feels sad, I used to think that was compassion. True compassion can only come from standing in the fire. Being a caregiver, watching a loved one regress, is painful. The Refiner’s fire is purifying us.