Care Partnering, Life & Living, Love, Real life

the stuff wilbur left out the first time around

Deb and Wilbur in early 2016.

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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Care Partnering, Life & Living, Love, Our stories, Real life

a day in the life of wilbur and deb

Wilbur and Deb in 1974

Wilbur spotted Deb at the skating rink in 1971 when she was twelve and he was seventeen. “She looked older than her age,” he told me. After she turned thirteen, they met at the cinema, walked into the movies together, and sat side by side. Her parents brought her there, and then picked her up when the movie was over. After a time, Wilbur got to meet Deb’s parents, then visited them at her home, after which they “finally got to date.” When I asked Wilbur how long they’d been married he wrote back: “Thirty-eight years, and we went together for six; so that’s 38 + 6 = 44; I tell her I count them all.” When I read that, my heart cracked. Deb began to show signs of early onset dementia in 2012, when she was fifty-two. Wilbur cares for her pretty much on his own 24/7. “When we took our wedding vows,” he says, ‘until death do us part’ was part of them.” I subsequently wondered if he might consider blogging. “No,” he answered almost immediately. “I’m not much of a writer.” But then the next day he sent me an email with the subject line “My blog.” This is what it said:

Sometimes I wonder what people would think if they knew the way we live. I wonder if other husbands and wives live like us because of Alzheimer’s disease.

We wake up around 6:00 to 6:30 am. I take Deb to the bathroom (hope she goes 🙂 ). Then to the couch and lay her down, cover her up. I will sit quiet and watch tv (volume down). Around 8:00, I prep her meds. Also during this time I wash, and I take care of the cats (feed, litter box), and dishes if I didn’t do them the night before.

At about 9:00, I take her temperature, blood pressure and blood sugar level. Give her the meds I have prepared and off to the bathroom to brush her teeth and hopefully go!? 🙂 Around 10:00 we make our trip to McDonalds for breakfast. She likes their big breakfast and eats all of it, and that is important far as i am concerned. We take the breakfast to a parking lot down the street and eat in the car. We eat in the car because it is the only place she sits still.

Back home we go. She begins pacing and talking. She says daddy constantly (long story), and he seems to be the one who she is talking to all the time. She gets aggravated sometimes, then settles down and just talks and paces. After a while she will sit and just be quiet (wore self out I believe) for about five or maybe ten minutes depending on how wore out she got. Then back up and start over.

Somewhere around 1:00 pm I will fix a lunch and give her her meds, and see if she will go to the bathroom. Then it is back to pacing and talking to daddy. Other names do come in once in a while, but mostly it’s daddy. She was abused when she was a little girl. Maybe she’s reliving that, I don’t know. I kinda rescued her from that, but I can’t rescue her from this.

Almost every day we go for a ride to get out. We need to get out sometimes. We may get a smoothie or ice cream. We do this in the car also. If we were to go inside she would not sit still and would get very nervous around lots of people. About 4:00 we have something small to eat and I give her her meds. And then it’s back to pacing and talking. She will pace so much she will get on all fours to crawl around to keep going. This used to bother me, but when I helped her up she would walk a few steps and go back on all fours. I decided then she wasn’t hurting herself and that was all that mattered.

Around 6:00 we have supper. Then she goes back to pacing and talking. This the part of the day that is harder. She is tired from all the pacing, and aggravated from being so tired. I watch her more at this time to make sure her balance is still ok. Not to say I don’t watch her other times, but at night I watch her more.  She walks her same route at night as in the day, but her head will be facing down and so sometimes she walks into the wall. The good thing is she walks slow so she doesn’t hurt herself when she walks into the wall. It makes her mad though. She gets aggravated about bumping into the walls.

At 7:30 I give her the bedtime meds. And then, you guessed it: back to pacing and talking. Around 8:00 to 8:30 we try to made it to bed. Sometimes she will go right to sleep and sometimes we have to get up a time or two. This process can take from one minute to thirty minutes — depends on how hard she fights it. Usually around 10:00 to 10:30 she will be moving around a little in bed so I get her up and we go to the bathroom. I help her back to bed and she goes right back to sleep. Usually at about 2:00 to 2:30 I will feel her moving around and I take her to the bathroom again. I help her back to bed and she is off to sleep.

At 6:30 am, we start over.

The above is just the routine.  It doesn’t count “accidents,” bathing battles, cleaning house, and anything else that one needs to do during the day 🙂 It also doesn’t tell you the times she will come up to me and say “I love you,” or when she just lets her hand caress me as she smiles and walks by. I wish there was more of that, but I will take it when it does come.

This is our life now. We don’t have the trips, and exciting vacations, not that we ever did. We didn’t have the money for that kind of life style :-). But we had a good life. We had a good life together. And I still love her the same as I did when I first saw her at the skating rink and we sat together holding hands in the movies. She’s my wife, and I love her.

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