the stuff wilbur left out the first time around

Wilbur Redman and I connected online in September 2016, in a dementia care support group. He told me the story of how he met the love of his life, Debbie, at the skating rink in 1971 when she was twelve and he was seventeen. “She looked older than her age,” he wrote. He sent me an email with the story of how they pass their days now that Debbie has Young Onset Dementia. I published “a day in the life of Wilbur and Deb,” with a picture of them in 1974. After Wilbur reread the piece, he sent me another email with the stuff he said he’d left out the first time around. This is what the second email said:

There’s so much more in the day than what I wrote before. So many emotions I have in the face of being helpless, knowing there is nothing I can do. Sometimes I just sit and watch as she goes through the day and it feels like I’m on the outside looking at her in her world, and I really don’t have a clue about where she is or what she’s feeling. I only know she is safe because I’m there watching her.

I do little things that seem small but that are actually really important, like making sure she drinks something regularly because sometimes she doesn’t know to drink, or even if she’s thirsty. If I ask her if she wants something to drink, she may say no, but if I hold a glass up to her lips, she gulps the liquid down like she’s been in a desert for days.

On the other hand, I might ask if she wants something to drink and she’ll say: “Yes, I am about to thirst to death!” And then again she’ll drink like she hasn’t had a drop of water in ages. So I make sure I give her something every hour or hour and a half, and anytime I get something for myself, I get something for her too. Same with food. I’ll ask if she’s hungry, and she may say no, but put if I put a spoon in front of her mouth, she opens up and eats whatever’s on it. Sometimes she says “Yes, I’m hungry,” and then I feed her. She usually doesn’t feed herself. Most times I feed her. She handles finger food, but even then I may have to trigger the motion by holding it to her mouth and then letting go. When I let go, she holds on to whatever it is and puts it in her mouth.

Awhile ago, around 10:30 p.m., as I was typing in bed next to her, she suddenly sat up and looked around.

“Deb, are you ok?” I said.

“Yes,” she answered.

“Do you need to go?” I said.

“No,” she said.

“You need to pee?” I was more specific.

“No,” she repeated. But I thought maybe she didn’t realize she had to pee. So I got up, and went to other side of bed and said: “Come on honey, I’ll help you.” I took her to the bathroom, and sure enough she had to go.

There are other things too, like taking her to her doctor appointments. I get stressed about what kind of mood she’ll be in on the way, as well as when we get there. I hope like heck I won’t have to deal with a major bathroom accident, and I worry about having to maintain a certain level of control in the waiting room. All these little things that used to be so simple are so hard and totally exhausting, and there’s only me to do it all. Not that I’m complaining, I’m just saying.

I also didn’t mention about the times when we’re in bed, and I snuggle up to her like I used to do before, and I whisper in her ear all the things I use to say, even though she’s sleeping, and mostly she doesn’t hear me. Then once in awhile she’ll smile as I am talking, or she’ll whisper back “I love you.” When that happens, I just about burst. I didn’t talk about how I have to hide my tears sometimes when I look at her and I know it’s never going to be like it used to be, and I miss her so much I can almost feel my heart breaking in my chest like it was made of glass and someone smashed it with a sledgehammer.

Everything revolves around her world. Her world is the only world she lives in. Sometimes I can sneak in for a moment or two. I interrupt her constant pacing and talking by calling her name. “Debbie,” I will say, and she’ll say “What?” And then I’ll say “I love you,” and she’ll say “I love you,” and then she goes back into her world, the place where I can’t live with her even though I try. Saying “I love you” to each other is the only constant we have. Even when she gets upset she answers “I love you” after I say it first. It keeps me going.

When I wrote before, I didn’t tell you about the emotions I have knowing it’s just the two of us, and how sad I feel that we don’t have a social life anymore. I didn’t mention the looks we get when we’re out in public. Sometimes I feel so alone that I wish everything were over. I’m not ashamed of what’s happening in our lives, I just wish it wasn’t so. I can’t help wanting my old Deb back, even though I still love her the way she is, and I won’t stop until the day one of us dies. Even then, I probably won’t stop. She’s my Deb, and I just love her no matter what.

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