Argghh…My husband says at the end of a grueling day this week. “I feel like I’ve run a marathon.” I laugh and say “We did.” I quip. “A paper marathon.”
I’m not sure what this part of my transition is called. I call it the ‘planning machine’ for lack of a better description. This thing called elder care/elder law. It encompasses everything needed for the elder; in this case my dad, to live out the rest of his life.
We are working fast to set up his care plans, financial plans, medical plans, estate plans, etc. We are the caretakers for an entire end of life plan. The hard part is my father has refused to make any of these plans for himself. Other than telling me to take him a VA hospital when he is sick and bury him in a VA cemetery. I got nothing from him until the doctor said, “He needs 24/7 care.” That means, move fast and move now!
He agreed with the doctor to go into an assisted living/memory care. Well here’s the thing about his Parkinson’s/Alzheimer’s/Dementia combo. He doesn’t remember agreeing to anything the doctor ordered. So it is Milly’s fault he’s in the “prison run by the mafia.” His words not mine. I forgot mention the delusions and hallucinations…
Here’s an example of one of our more humorous conversations: He whispered into the phone. “The Mafia runs this place.”
I said, “Really?”
“Yeah, there’s a bunch of old guys and they run the place.”
I think I rolled my eyes. Good thing he can’t see me. I’m thinking you’re an old guy too. Join the club. I tell myself this is the dementia not my dad. I ask him, “How do you know?”
“They don’t like me.”
“What did they say to you? Did they do anything?”
“The head old guy wouldn’t let me pass to get to lunch.” He stopped as if that explained everything.
Being new to the world of dementia I don’t know how to respond. I guess I was quiet for too long because he continued, “They’re gonna kill me.”
Shocked I say “Dad did he threaten you?”
“No he didn’t say nothing.” His words start to slur. “I have my cane and he blocked my way with the walker.”
“Dad, he was trying to get to lunch. He is going to be slower than you.”
“You’re going to find me dead. Then you’ll have call the police.”
“Dad there haven’t been any murders at your place.”
“Then I’ll be the first!”
I inwardly sigh “I love you.”
Right now he is angry about the “prison.” He wants to go back to his place in the country. He does not remember the last three years we have been going over options for his care. Since he said no to every option, I am left to make all the decisions for him. I’m pretty sure he thought life would just abruptly stop. It hasn’t. Right now he is angry with me for making these decisions.
The paperwork, attorneys, social workers, and meetings have consumed our lives. Most people, including me, don’t understand Parkinson’s disease and dementia. We no longer grow up knowing what to do with Grandpa. In our world this is a big fast learning curve.
This week I was asked how I am handling all of this. I said I am leaning on God and the Holy Spirit to guide me step by step. Oh yeah and holding onto my sense of humor. Some of the steps are little. Some of the steps are GIANT. All of the steps are hard.
It is something like when I was a young mother. I doubted my decisions but I knew I was doing the right thing. I would be thrilled when my kids wanted to help in the kitchen. But if their hand got too close to a hot oven rack or stove burner, I would snatch it away. They would become upset and angry at the sudden action.
A friend of mine was praying the rosary this week, she said I was the wedding feast at Cana (Second decade of the Luminous Mysteries). The bulb went off as I said, “The everyday miracles.”
She said “…You snatched him away from death to give him life.”
It’s just like snatching a child’s hand away from a burn. Even though the child screams and hollers, you are doing the right thing.
A lot happened this week. We made mistakes and made real progress. I didn’t have a lot of time to write this week. I started this post Thursday and wrote so much about what happened. It was too much. I had to file in it away in my not2Bposted file.
This morning I thought I need to start writing this stories for my family. I hope to share some with you. I never thought I might write non-fiction but I’m considering a book about this ignored knowledge. I might be able to share this part of my journey. Just a thought…
My father’s journey is one with dementia and facing the end of his life as he knows it. I choose to walk with him through the darkness. I pray he will find his light. Either way as his daughter I walk with him.
Peace and Love