It has been a long journey. A long, long journey. And our baggage is getting heavier. I can't carry it any longer. I have to drag it behind me now. And the edges of the cases are becoming ragged and worn. What once was just an easy day has become a day filled with strife. And sadness. And many hard decisions to make.
I am talking about our journey with Hospice. And Parkinson's disease. Along with the dementia. It is an over-whelming journey. One with few rest stops. We just keep going and going and going.
Richard's joints and muscles are becoming stiffer. Harder to move. They don't bend the right way. His legs no longer support his body. He no longer stands up straight. He can't move his arms very far away from his body. He can't reach a glass of water that is right next to his chair. He cannot turn himself in bed. He cannot sit up alone. He needs support. And he is stiff. Oh so stiff. It hurts him when we move him. And I don't like the grimace that shows on his face. I hate seeing him in pain. He has the typical look of a Parkinson's patient. His face is expression-less. Like a mask.
Last night he didn't sleep. He coughed. He produces a lot of saliva and then it chokes him. I was up raising and lowering the head of his bed. Offering drinks. Administering atropine drops (which help to dry up the excess mucus). Nothing much helped. It is just what happens. So this morning we didn't get up at our usual time. And now he sits at the table with his breakfast in front of him. He doesn't know what to do. I had to walk him through each step of brushing his teeth: rinse your mouth, take out your dentures, pick up the toothbrush, put it in your mouth, rinse, spit and on and on until that simple step was complete. And now we are doing that with his breakfast. Step by slow, agonizing step. Breakfast will take hours today. Some days it is like that. He gets stuck (frozen) and he can't move. Then I will take over and feed him. He doesn't like that. It makes him feel bad. I understand that but you can't take 4 hours to eat a simple bowl of cereal.
He sits at the table with his head bent forward. He picks at the napkins. He touches then and tries to pick one up. If he manages to get it picked up, he folds it and unfolds it just to refold it again. He stares. At what, I don't know. He drools. It drips from his lips to his chin. His eyes are glazed over. What does he see? He sometimes answers my questions. More often he is quiet. His speech is so soft. And slurred. And very hard to understand. We ask him to repeat things often. So he does. In the same soft, slurred and quiet voice that we didn't understand the first time.
Few things perk him up any longer. Knowing that Justin (our youngest son) is coming will perk him up. Having Darian (our grandson) here helps too. Darian has been gone a great deal of June. He had Boy Scout camp and now is gone to wrestling camp. That changes Richard's schedule. And changes for those with dementia is never a good thing. He sits for hours in his recliner with the TV on. He stares at it. But I can tell he is not engaged in what is on the screen. He doesn't follow the story-line.
He doesn't follow our conversations.
I can't take him out in the car any longer. I cannot lift him from the wheelchair to the seat of the car. We can manage it when Darian is here. But it is very hard. And my fears of dropping him are great. He loves to go for car rides. But that is a simple pleasure that we can no longer do. If fact, most of the SIMPLE pleasures of our lives have become great struggles.
He didn't want his pills this morning. And does it really matter? He takes pills to take off the fluid...that in his hands and feet and in his lungs. He takes pills to help with bladder spasms. He takes pills for acid stomach. And pills for prevention of bladder infections. He no longer takes heart pills or pills for his thyroid. Or blood sugar pills. Or pills for Parkinson's. We gave those up more than a year ago. He takes pills for sleep and pills for depression. And then there is the liquid morphine and the anxiety pills. Do any of them really matter anymore? Maybe the Morphine and the anxiety tabs and leave the rest off for a day or two. Constant decisions to be made on his behalf. I can't find anyone to help with these decisions. They don't have much to offer. They say it is up to us...meaning me. I am tired of making decisions. I am tired of all of this. I am tired.