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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Care Partnering, Life & Living, Love, Toward better care

an open letter to those who think they know better

elder abuse man painterly

Dedicated to unappreciated care partners worldwide. Thank you for all you do.

Dear random person who sees my care partner from time to time and feels the need to point out s/he has bruises all over her/his body that look frightening and s/he has really declined a lot since the last time you saw her/him and s/he can barely walk anymore and s/he’s asleep when s/he should be awake and sometimes vice versa and you hardly recognize him/her as the person you used to know and you’re really shocked and feel bad seeing him/her like this and isn’t it sad and a shame and this is what you would or wouldn’t do if you were me and you would rather be shot than end up like this,

Yes; I know. I know what you think.

But you know little of me and/or the situation in which my care partner and I find ourselves. You think you do, but you don’t. Pretty much the only people who get it are those who have been through it, and you clearly haven’t otherwise you wouldn’t say the things you do and I wouldn’t need to write this letter to you.

I either live with my care partner or I visit her/him almost daily. I spend endless hours and fleeting moments with him/her talking nonsense and singing and just being together, because one day soon s/he will be gone. Every minute with him is torture; every second with her is precious. I know by the way s/he rocks back and forth when s/he wants to get up and get moving, and by the look on his/her face and the feel of her/his hand in mine if s/he is able to stand unassisted. Mostly s/he’s not, so I am by her/his side whenever I can be. When s/he is able, we shuffle around wherever we happen to be to get some exercise.

I know by the way she pats her hair that she loves the fact that it’s “done.”  I know the colour and brand of her nail polish because I supply it. I know when she had her last manicure because I was the one who gave it to her.

I know by the way he touches his face that the cut just above his left brow worries him. I know the kind of aftershave he prefers, so I buy it to help him know he’s the same man he used to be: the man who was and still is the love of my life. I know by the way he reaches out to me when I’m near that my presence is important whether he recognizes me or not.

I know when his/her sleep is unnatural by the slackness of his/her mouth and the rhythm of his/her breathing. It breaks my heart that s/he is being medicated for normal behaviour which could be addressed and resolved without drugs. I can’t change that; I would if I could.

What I can change is a soiled adult brief, and I do so often. No one showed me how. I figured it out myself, just as I’ve learned everything else I wish I’d never had to learn about being a caring partner to someone who lives with dementia. I didn’t asked for this. I never wanted it. But here I am. What can I do?

I recognize her wheelchair by the stain on the seat. When she can’t feed herself, I help her to eat like she helped me when I was a baby. When she’s able to eat by herself, I celebrate a small victory. I help her engage with her shrinking world, not simply exist in it.

I see her/him in ways you can’t even begin to imagine. We are reflected in the mirror of each other. I have cried with her/him, comforted her/him and felt the sting of her/his acid Alzheimer’s tongue. I pray for her/him to stay and go. I watch her/him look death in the eye and grab life by the horns every day despite her/his illnesses. I am her/his cheerleader, her/his advocate, her/his voice. I am her/his child/parent/spouse/sibling. Our souls are linked; our destinies are intertwined. We are more deeply connected than we have ever been.

Who are you? You are a casual observer making ill-informed assumptions and coming to erroneous conclusions based on incomplete information. You mean less than nothing to me. My care partner means everything to me. I have experienced first hand the effects of decisions I’m told are in his or her best interests, but which in reality have little or nothing to do with her/his health and well-being and everything to do with convenience, reducing costs and conserving her/his wealth for someone else’s use once s/he’s gone.

The effects of the decisions in which I have no say include the cuts, bruises and other conditions about which you feel compelled to apprise me. Your thoughtless and insensitive comments add salt to other wounds you cannot see. You don’t know me. You don’t know my circumstances. You don’t know my parent/spouse/sibling/child although you may think you do, and because you think you do you also think you have a right to judge me or her/him or the situation in which we find ourselves.

The next time you feel tempted to comment, judge, berate or advise me on aspects of my care partner’s condition  or my role in her/his life, please consider all of the above and mind your own business instead of mine.

I don’t need or want your judgment or your unsolicited advice.


Unseen and unheard care partners worldwide

P.S. to all the beautiful friends and acquaintances everywhere (especially those in online support groups whom I may never meet or know personally) who support without judgment and share their wisdom and experiences without expectation: thank you, I love you and I am so grateful you are here to hold my hand ❤

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Copyright: bialasiewicz / 123RF Stock Photo

Care Partnering, Inspiration, Joy, Love

one of the most beautiful love stories ever

A love story with Alzheimer's

The feelings evoked by the video below are why I made time every day for four years to visit my mom in #DementiaJail.

I didn’t do it because it was a chore or a job. Not because it was “work.” Not because I felt obligated, or because I felt there was a debt I needed to repay or because I should do so for whatever other unimportant reason.

No. None of the above.

I create time for joyful acts of shared loved, compassion, and humanity because I wanted to. The time I spent with my mom was full, tender, profound and healing for both of us. Those moments, minutes and hours were also meaningful for those who were around us and part of our circle.

Times like the ones we had together weave the fabric of the most beautiful love stories ever. Just like the one you are about to watch in the video. They are the very essence of life and I am so grateful I was able to breathe them in.

Work your loom.

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