I started writing “The Close Heart of the Afterlife” in 2014, the year before Harry died. It is narrated by a ghost who is drawn from the afterlife to help his twin brother cope with his wife’s downward spiral into Alzheimer’s. Told from both heaven and the earthly realm, the reader experiences the desperation accompanying a loved one’s cognitive decline.
The story grew from my experience with my late-husband Harry’s dementia. It was the hardest time in my life, in many ways harder than when my daughter was in jail for heroin use. Harder because there was no break from Harry’s cognitive demise. It was difficult watching the man I loved slip away.
One of the ways I coped was to write in my journal. The release I got from putting words on the electronic page helped me process my emotions. Some of my best stories have come from the words in my journal. I spin a painful or uplifting experience into a story. Following the 80/20 percent rule, these stories are only 20 percent fiction. This is true of this piece. I still cry when I read it.
I originally wrote about a wife caring for her husband who had dementia, based on my care of Harry. It was depressing, much like my journal below. There was nothing to hook the reader or keep them reading. So I used a trick Stephen King suggested in his book On Writing, to switch the gender roles of the characters. I tried this partly because I was afraid Harry might read the story and know it was about him. And he was in denial of his dementia. He thought the doctors were all wrong and he was fine. Hence, I reversed genders so the husband was the caregiver of his wife. It was still pretty sad and not very engaging. So I put it aside not intending to do anything with it. It was just too painful.
Until I read The Lovely Bones, which has one of the best descriptions of heaven I’ve ever read. The novel gave me the idea to add a brother from the grave. I decided to make the ghost the narrator and it worked.
I submitted my rewrite it to my writing critique group and got some great feedback. Although the dementia seemed real, the story was choppy. It had a lot of breaks with poor transitions and went back and forth in time. And didn’t hold their attention. I could not face the rewrite of the story because I didn’t want to think about that time in my life. I needed some distance from it.
Sunday I had some time and decided to take the story apart based on the feedback from my writing group pictured above. I moved scenes around and put them back together in a more chronological order. We work shopped it again Wednesday. The said they had a better sense of the wife’s dementia and were drawn into the characters relationship to make it more hard hitting and emotional.
Harry was a marketing writer and good at writing tag lines and titles so he came up with the title for the story before he died. I had told him a little about it, without telling him it was about him. So the story is very much Harry’s story. I hope my love for him shines through. My effort is a legacy to his brilliance, his talent, humor and love of language. I’m submitting it to literary magazines for publication, so hopefully you can read it soon.
This is the Harry I remember–our wedding day in 2003.
Following are thoughts from my journal when I started to lose the Harry that I loved due to his cognitive impairment. I have not shared these thoughts until today. My desperation in these honest words created “The Close Heart of the Afterlife.”
Harry’s decline started on August 8, 2011 after he had a seizure– I didn’t know it then but he was missing nearly a centimeter of his frontal lobes at that time. Brain damage from football concussions combined with alcohol abuse likely caused his dementia and seizures.
Saturday, September 17, 2011
It is cold and rainy outside. I’m worried about Harry. Tuesday was a bad day. He had a bad episode with his seizure medication where he was so euphoric it was like he was on speed. He woke me up at 4 am telling me I couldn’t help him, that Doctor Yaremsetty couldn’t help him. His doctors were all wrong. He was a broken record, repeating over and over that no one would listen to him. He wouldn’t quit talking. He read the sports scores and the articles from the paper aloud to me. I cried several times. I went out on the deck and just stared off into the yard.
Finally I called Yaaremsetty and got his meds switched.
It has been so much pressure on me since Harry’s seizure. He is just in denial that he should be on seizure meds. He’s scared and drinking too much. I don’t have a job and I’m worried Harry will lose his job. How can he keep it when he sleeps until 11 am, works an hour or two, then takes another nap?
Sunday, September 18, 2011
I’m still worried about Harry. He fell asleep while I cooked eggs. I guess it is his seizure meds making him so tired. He was up again at 3 am. I hope he’ll be able to work tomorrow.
Monday, September 19, 2011
I don’t know what to do. Harry is really off. He is forgetting things. Has mood swings and concentration problems. I think he has dementia.
He woke me up at 1 am and then at 6 am. He doesn’t remember talking with me either time. He’s scared about his meds. He keeps saying he doesn’t understand why he’s being treated like he has seizures every day instead of once every decade. I’m really concerned something is wrong with him like Alzheimer’s.
I got him up at 9:30 for work. I made him an egg sandwich and brought it up to his office. He came downstairs, saying he couldn’t remember how to put his password in and work. He didn’t know I’d made him an egg and brought it up to him. He went back to bed without eating or logging into work.
I have a call into Yaramsetty. I’m afraid it is not just the meds that is the problem.
What do I do? Even if I find a job will I be able to work with Harry in this state? What if Harry loses his job because he’s not working? We won’t have insurance if he’s not working.
He is sleeping during the day and has insomnia at night. He says biting comments to me. Says I don’t understand him and then the next minute he apologizes and says how much he loves me. I don’t think I can live with him through this.
If he would at least let me sleep at night, it would be helpful. I just feel groggy and drugged out all the time.
Should I look into hiring someone to care for him?
Should I look for a job? Will I be able to work? At least I would have something to do to occupy my time.
Wednesday, September 21, 2011
I am going out of my mind. Harry is sick to his stomach. I got home around 3 pm after swimming and lunch with Cathy. He said he was going to take a nap. He’s been coughing and sleeping since I got home. It is depressing trying to watch TV while he’s sleeping. I feel trapped.
I talked to Cathy about Harry and realize how miserable I am. Harry is sick or verbally abusive most of the time.
I think the 100 mg of Zoloft is too strong. I think I’ll try 50 mg tomorrow.
Thursday, September 22, 2011
Harry was vomiting all night. Finally about 4 am he took an Adivan and was able to sleep. I feel exhausted. Dumping his puke bowl and trying to make him comfortable. I feel really bad for Harry and am worried about his health.
I have lunch with Anne at noon. I wanted to get some resumes out before that but I don’t think that’s going to happen. I’m just too tired.
Harry ate an English muffin and is now sleeping. I certainly hope he feels better. I have not had an entire night’s sleep since Harry’s seizure. I’ll try 50 mg of Zoloft today and see how I feel.
I feel so confused, or maybe lost is a better word. For the first time in my adult life I am jobless. I have no direction, no schedule, no sense of purpose that a job would give me.