The diagnosis of dementia is an evil, cruel and horrible thing. It steals away the soul of the person suffering from it. It gets harder and harder to for the person to be who he is. The once loving, caring, generous heart, changes. It becomes very inward. Only thinking of what is good for himself, not seeing what it does to the people around him.
My dad has started down that trail. He doesn't realize he is doing the things he is. I know he doesn't know that sometimes it just plain hurts.
Ben's sudden illness has severely increased Dad's confusion. The stress has really turned him inward. He only focuses on himself. Not his dying son. I am having a very hard time with this. I want Dad to want to be there with Ben. I want him to understand what is going on. That his one and only son, will soon no longer be with us. Selfishly, I want him to understand how it is affecting me.
I want to be there in Des Moines with my brother. I want to be sure that he is not alone when he dies. I don't want him to go into the next world feeling lonely in this one. I want to be with him for me. I want to hold his hand. I want to stroke his fore head when he moans. I want to be there. Dad doesn't understand.
I asked Dad today if he wanted to go see Ben in Des Moines once he was settled in. At first he said yes. I was so glad. I wanted to see where Ben was going to spend his last days and hours. I wanted to see for myself that it was a comfortable place for him. I wanted to see him resting, peacefully.
I went to get clean clothes to take a shower. I had just gotten home from being at the hospital all night. I was exhausted and in the same clothes from the day before. When I came down with my clothes Dad was doing his grumbly breathing.
Dad has a strange grumble in his throat sometimes when he breathes. The first time I heard it I called the home health nurse to come out and listen to his lungs. I wanted to make sure that he wasn't developing pneumonia. She came and listened to his lungs. They were perfectly clear. The sound was coming from his throat.
As time went on I started noticing his grumbly breathing would come on before physical therapy was scheduled to come. It would start before his bath aid was to come. It would start any time he needed to do something he didn't want to do. It would get really loud when it was something he really didn't want to do.
When he went to the doctor last month, I told the doctor about it. I don't want to just assume it is manipulation. She listened to his lungs, she too found them to be clear. The sound again was coming from his throat.
Still frustrated and not wanting to feel like my dad is manipulating me the way a child would. I have tried very hard to believe it is something real. It gets hard though when he looks at me like, ha ha, I got my way, when I give in to him when he is doing it. If I suggest something that I think could make it feel better, "No it's not thaaat...." he will start. Then he goes on to name off seven other things totally unrelated that are also bothering him. Anything to get out of doing what ever it is he doesn't want to do. I never knew when to believe him.
On the day of Kahlen's birthday party, I came down stairs to get Dad ready to go. The grumbly breathing had already started. It was loud. I cringed. I just cringed. I had been looking forward to Kahlen's birthday party, since probably her last birthday party. I had made her cakes. Willie had asked for the day off, just so he could go too. I felt like I was going to cry. I knew what the grumbly breathing meant. Dad didn't want to go to his great grand daughter's birthday. It didn't matter that he knew how hard I had worked on those cakes. It didn't matter that he knew how much I wanted to go. It didn't mater that he knew Willie had traded around for the day off special to get to go. It didn't matter that if Willie and I didn't go, Kahlen wouldn't have a birthday cake at her party. All that mattered was that he didn't want to go.
This wasn't the Dad I grew up with. This wasn't the grandpa that adored his grand children. This was a man that only wanted what he wanted.
I called my sister. I told her what was going on. She said she'd come out to our house and stay with Dad. Thanks to Stacey, Willie and I BOTH got to go to our granddaughter's birthday.
The grumbly breathing was very loud. Dad was looking at me like a little kid trying to get out of going to school because he had a test. I knew we weren't going anywhere. I knew I wasn't going to get to see my brother again today.
I got in the shower. I took a long, long shower. As the water poured over my back, I thought about what I was going to say. How was I going to convince him his son needs him. That I need him. That Stacey needs him. I knew what ever I said, it wouldn't work. I wondered to myself, where Dad's right to say no ended and where my rights began. Are his wants and desires always more important than mine. Do Willie and I always have to give up what we want to do, if Dad doesn't want to do it too? I felt selfish. I felt ungrateful. He's my dad.
I came out of the bathroom. I asked Dad if he still wanted to go see Ben. "I wish I didn't have to go anywhere today." He answered. I said ok.
Ten minutes later Dad asked what we were going to do for lunch. I told him I'd make something since he didn't feel like going anywhere. "Oh, I don't mind going out for lunch...."
I didn't take him out to lunch. I told him if he didn't feel well enough to go see his dying son, he shouldn't be going out to lunch.
Was that cruel? I could learn to deal with Dad's dementia. It would be hard, but I could eventually get used to my brother being gone. Experiencing both at once, is agonizing.
I followed the EMTs as they wheeled Ben out of the hospital. They stopped at the doors that led to the ambulance bay. I stroked Ben's head one more time. I kissed him on the fore head and said good bye. I felt like I might never see him alive again.
Dad's dementia may make that true.
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