Charlie

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Charlie

mindful mental decline

Five years ago, Charlie Day received a diagnosis of Mild Cognitive Impairment (MCI). MCI is an intermediate stage between the expected cognitive decline of an ageing person and the more serious decline of dementia. As a retired psychologist and meditation instructor, Charlie is well-versed and comfortable with "in between" stages. It is evident that 50+ years of teaching, researching, world traveling, and meditating has created a pragmatic and inpenetrable spirit in this smiley, spectacled man. 

Charlie attributes his no-nonsense, in-the-moment character to the following of Buddhist philosophy. "It teaches in a way that is very logical, practical, and easy to practice in every day life. Plus, it can be practiced by people of any or no faith. In my classes and lectures, I likened many of the ideas of Buddhism to the meditative relaxation techniques I would employ as a psychotherapist. To think I spent all these years studying how to empty and quiet the mind and now I can do that so easily. It's called dementia. Ironic, isn't it? I can still practice meditation but now I call it nap-itation," he says with a wink. 

He's right though. I haven't been able to stop thinking about the irony of someone who spent their whole life devoted to mindfulness entering their last chapter of life mindful of losing their mind. Perhaps that makes him all the more prepared to endure this peacefully and presently, continuing to teach others by example far past his retirement. 

Meeting Charlie

Charlie's apartment is cluttered with fascinating objects from all over the world. Art adorns the walls. Inspirational quotes cover the fridge. A cat rubs against my leg. 

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"This is my cat. Her name is Missy but I call her Poo. I got her a couple years ago from the Animal Rescue League. She's 16 years old you know? That makes her about my age in human years. I got her because I figured we could die together. But she's a lot younger in spirit and energy than I am, let me tell you!"

Poo's company is wonderful, as Charlie never married or had children. His neice Jennifer lives just down the road and cares for him, as well as many friends and meditation students. But I'm a sucker for love, so I jump right in by asking Charlie who his greatest love was.

"This woman I was with for 15 years. She was a social worker and we worked in the same clinic in California. I came back to to the US after teaching in Thailand thinking I'd end up in California again, but while visitng my family in Des Moines, I was offered a job at the Child Guidance Center. She and I stayed close but she ended up dying from breast cancer. It was such a shame because I always told her we'd get married when I got old. Too old to want to be free and travel." 

It was difficult for Charlie to make commitments as he spent many years traveling and teaching at universities in Asia, specifically India and Thailand. Charlie began his professorship at California State University in Los Angeles after completeing his post-doctorate work at Cedars-Siani Medical Center. He received all his Psychology degrees from the University of Iowa. 

If these two things formed Charlie's character, then the legacy of that character is one of peace. 

Charlie told me about the unarmed student protestors being shot and killed by the National Guard at Kent State after Nixon invaded Cambodia during the Vietnam War. As a response to this atrocity, some college departments across the country voluntarily shut down in solidarity. Charlie called a meeting to try and sway his department at California State University to do the same. He even pledged to reimburse his colleagues for any loss of wages they might incur as a result of being absent without leave, but his efforts were unsuccessful. It didn't stop him from carrying out his own protest, though.

"I'm not lost, I'm exploring the nieghborhood."

I can imagine Charlie some years from now as his dementia worsens, repeating this very sentence to a loved one. No longer a 4 year old, but still approaching life with that childlike self-assurance. In fact, he reacted to his MCI diagnosis with the same humorous poise. 

"I just tell people there will probably come a time when I can't hide my own Easter eggs anymore," he laughs. Charlie knows there will probably come a time when a lot of things can't happen anymore and he knows this quite intimately because his younger sister passed away from early onset Alzheimer's. 

Living in the moment is something Charlie has pursued through meditation all his life. But he still questions whether a lifetime of practice will keep him zen until the end.

30-some years ago Charlie started meditation groups in his city and they're still going and growing to this day. This, he says, is what he's most proud of accomplishing in life. 

I asked Charlie if he had a meditation group full of people with dementia, what would he tell them to focus on?

"It's all about coming back to the breath. In fact, that's the one thing we're sure of having until we die. But definitely letting go of the shame and embarassment. There's no need for it. Knowledge is power. Trying to educate yourself and your care takers ahead of time so you'll know what to expect is extremely helpful."

He continued, "But it is also important to note that what is helpful towards the beginning might not be helpful later on. My neice knows she'd get into a habit of saying, 'oh, it's alright' or 'that's okay' whenever I would get frustrated with my memory problems. I finally had to tell her, 'don't say that anymore!' because it was just a reminder that I was losing it and I didn't need to be reminded. I knew. Early on it was a nice way of reassuring me, but it's not effective anymore."

Turns out communication is always key to keeping the peace. And cat cuddles, too.

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Jeanne

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Jeanne

presence prevails when memories fade

We were always moving when I was a kid. I hated it. And yet now, in my twenties, it seems like that’s all I ever do. I came up with 21 places I’ve taken up residence in during 26 years of life. On one hand, this has formed me into someone who adapts to change and makes new friends like a champ. On the other hand, it has created an inner turmoil to figure out what “home” means to me. Or what I want it to mean. Part of me is jealous of people who have this one home with a bedroom that serves as time warp, untouched since high school and their heights scribbled on a post. There’s something nostalgic and romantic about a place that contains memories of your entire life within it’s walls. Breeding grounds for real and intense personification.

I ever increasingly recognise home as a feeling associated with people rather than an address. This affords me the opportunity to create or have pieces of home in different states, countries, and continents. Some people are particularly exceptional at making me feel at home. My Grandma Jeanne has always been one of these people. For this reason, I wanted what I wrote about her to center around home.  


After lunch, we kiss grandpa goodbye and head for the car. I watch her walk to the driver’s side. I wonder if she’s actually forgotten that she hasn’t driven in over a year, or if she knows and just wants to see if I’ll hand her the keys. “Oh, it’s okay! I’ll drive us, grandma.” I said that so sweetly, it makes my stomach sick. Speaking of stomachs, I can’t help but notice that her’s vanishes more and more every time I see her. Her wrap sundress clings to her body, accentuating the teeniest, tiniest waistline I ever did see. She comments on how we’re both wearing purple. “Did you wear purple just for me? You must know that’s grandma’s favourite colour.” She caught me.

She asks what we’re doing today. I tell her we’re going on a trip down memory lane. I mean this quite literally because I’m driving to nearly all the homes she’s lived in. I could technically call this a reminiscence activity like the ones I would do with patients in the dementia centre. But my emotions behind this gesture to engage her memory make it feel less like a fun game and more like a desperate plea. This time it’s personal. This time it’s my grandma. 

We drive to 3107 Madison Ave. I know from many stories told around dinner tables that this is the house my dad and his siblings grew up in. My grandparents didn’t move from this house until about the time I was born, which means this is the house Jeanne Kay Vander Well spent her mothering years. Twenty of them, to be precise. This is where she would’ve welcomed her four babies home from school, bandaged scraped knees, attended swim meets, took prom photos, moved kids into college dorms, and welcomed fiancees into the family. This is where a slew of VW Beetles were parked over the years. Most notably, the infamous sand grey coloured one with wiper blades that didn’t work. My twin uncles tied together long strings of rubber bands and attached them to each blade, pulling them alternately when it rained. Classic. It should be easy to get her to tell me about this house, right? There’s a family piling into their car in the driveway. Grandma waves and asks them if it’s okay if we take a picture here. “I used to live here a long time ago,” she says with a beaming smile. I snap a photo. “Grandma, isn’t this the house where your kids grew up?” 

She forgets. 

Whenever I get close to one of our destinations, my cup overfloweth with hope as she exclaims, “This street looks familiar.” When we get out of the car and stand in front of a house my heart beats please remember, please remember, please remember.

Standing in the driveway of their house at 4001 43rd St, grandma stares up at a giant tree that shades the steps leading to the front door. In my mind I see photographs taken on these steps: my sister and I in our 90’s floral print Easter dresses. Cousins eating popsicles, knees covered with sidewalk chalk dust. Family members bundled in winter coats playing in the Christmas snow. I cried when my grandparents moved out of this house. I felt attached to it for many reasons, but one being that it’s where I fell in love with the lady standing in front of me. As a kid, grandma’s house was one of the greatest places on earth. It is where I was enveloped in the sweetest, most nurturing spirit and drowned in bowls of Apple Jacks. It is where I was taught important life lessons in faith, breaking bread, and sharing. It is where I ran circles until rocked asleep. It is where my imagination flourished and my first relationships were built. Standing here now I’m flooded with visions of mauve and dusty blue, the smell of coffee and cinnamon rolls, and the sound of cuckoo clock chimes and high-pitched squeals of laughter. I wonder what floods grandma's mind. 

“So many memories here,” she says.

“Yes, for me, too. Some of my most favourite ever. What are you thinking about, grandma?”

“Oh, I don’t know. We used to host a lot of people here. I think it’s probably my favourite house we ever had."

She’s still looking up at that tree. I watch her as she puts her hands on her hips, as if she’s trying to work out something in her head. I wish I could crawl inside her brain and reconnect whatever wires are frayed at the edges. It’s almost as if she’s staring at a faded picture. She knows what the image is because she’s stared at it so many times, but now she can’t make out any of the details. The stories aren’t there anymore. Not like they used to be. A part of me wants to poke, prod, and push further, but I don’t. I’m not sure if this is because I’m accepting reality with ease or because I’m afraid of what will happen if I do.

The last place we visit is her childhood home. Since the longest amount of time has passed since she lived there, I find it ironic that this is where she ends up talking the most.

She mentions the ice cream parlour and the skating rink up the street that she frequented growing up. She laughs as she tells me about the time she was riding in the backseat of the car with the windows rolled down and her dad spit his chewing tobacco out, only for it to fly back and hit her in the face. Turning towards the house she says, “Up there in the right hand corner is where my bedroom was. And right below is where Grandma Daisy stayed when she lived with us.”  

Ah, Grandma Daisy. Maybe that is why she is recalling so much. Grandma Daisy is the known matriarch of my family and a woman Grandma Jeanne adored. Daisy divorced her alcoholic husband during a time when it was taboo and eventually lived with her daughter and son-in-law, helping raise their only child, Jeanne. She was poor, but not in spirit or sewing skills. She had tags that read, 'Made with love, Grandma Daisy' adorning all her tailoring. She was incredibly kind and possessed a strong faith, which has become a legacy that lives on to this day. I think Grandma Daisy was one of those people who made Jeanne feel at home. I imagine this place is where she fell in love with that lady. Perhaps that is why standing in front of 1215 Guthrie Ave., she feels it. 

Although Grandma Daisy died long before I was even dreamt of, I have felt her presence through my own grandma because she was a part of “home” for her. If I’m fortunate enough to have grandchildren one day, I suspect they will know the presence of Grandma Jeanne through me for the same reason.

Dementia in all it’s cruelty may erase memories and stories. It might take away what someone remembers about where they lived, played, slept, celebrated, ate, or parented. But if home can be the feeling you experience in someone’s presence and not just an address, dementia can’t erase that. Not really. The Grandma Jeanne that I know so well is a former version of the woman I behold now. I wonder if she felt this about herself as she stood in front of the homes she once lived in, each representing a different chapter in her own life. Perhaps she’s reached a point where it all blurs together as distinct memories are lost. This leads me to question: if you don’t remember who you were, how well do you know who you are? If you don’t remember who you are, are you still you? I obviously don’t have answers to these questions, but they turn over and over in my mind. All I know is that for as long as Grandma Jeanne is here, she holds a bit of home whether she’s aware of it or not. There’s a good chance one day she won’t remember who I am. Just the thought that I won’t always be greeted with a “Hi, Taylor-Roo!” and a tiny smear of pink lipstick on my cheek causes a lump to form in the back of my throat . But I can live without the recognition knowing this bit of home will live on in me, to be felt by those who will grow up in the wake of this wonderful, wonderful woman. 

If this story tugged on your heartstrings and you want to send Jeanne good vibes...

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Kay

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Kay

finding new beginnings at the end

Kay was the first person I had ever met to be diagnosed with early-onset Alzheimer's (meaning diagnosis happened before the age of 65). All too early, she joins a rapidly growing group of 44 million people across the globe living with Alzheimer's or another form of dementia. 

Here was Kay, in the early stages earlier than most. "Degenerative" and "incurable" now labels pinned to her chest. I had no idea what to expect from my conversation with her. I had prepared myself for the worst. I readied myself for tragedy and overwhelming sadness to come as we discussed the experience of knowing what is going to happen and to being helpless to stop it. My mind, always searching for an analogy, imagined Fortunato from Poe's Cask of Amontillado. Poor Fortunato, chained to a wall in a holding cell as his rival slowly builds a wall around him, brick by brick. He can do nothing but sit and wait, knowing he will he never escape the dark and isolation.

Perhaps some people would draw a comparison between their experience with Alzheimer's and morbid literary references, which would be perfectly valid. Kay, however, does not. Ironically, Kay did mention a holding cell in our conversation but it was in this context, "I feel like I’m in a holding cell and God is letting me write and create. You have a choice when you get diagnosed with Alzheimer’s. You can be angry, you can be frightened, or you can try your hardest to live fully." 

Needless to say, I was not expecting to encounter a woman brimming with memories and a sense of humor. If only optimism were contagious. She'd be in high demand. 

Meeting Kay

Kay peeks out from her apartment door and greets me in the hallway with a big hug. 

“We just didn’t know what to expect, now did we?"

I walk around her living room while she makes me a cup of coffee in her Keurig. Donut Shop. Nice. 

I study all the knick knacks on her shelves. You know, the trinkets only grandmothers seem to have. I wonder to myself if one day I will embody what I know to be grandmotherly. Will I have decorative bathroom towels and bowls of two-year old Werther's, wear crew neck sweatshirts with cats on them, and be worshipped for my cinnamon roll recipe? Or will I shop at GAP, live in a loft, and feed my grandkids quinoa salad? Futuristic grandmas. This is kind of blowing my mind to think about. I make a mental note to remember this and turn to Kay, who appears to be searching for a note of her own. Rummaging through a sea of papers cascading over her countertop and onto the kitchen table, Kay pulls out one where she had written: do this today or tomato

“How funny is that? I have no idea what I was thinking or talking about. Alzheimer’s feels like information evaporation. I keep asking questions about things I already know. I’m disorganised and I’m leaving myself all these notes. But I want to write a book about how to make peace with Alzheimer’s and call it Today or Tomato. So this little note inspired me."

Kay tells me about how Alzheimer’s causes her to mix words up frequently.

"I spent a whole day not being able to say 'deeper digging’. I kept saying, 'I’m going to do some digger deeping’. Seriously, all day I kept trying to get it in my head and it never came out right."

“But I’ve always been called ‘Crazy Kay’. I was always the one forgetting things or accidentally wearing two different shoes. I’ve been like this for so long that my friends told me, 'Honestly Kay, how would we have known? How did they diagnose you because this is just you.' I understand their confusion. If you look at the symptoms of Alzheimer’s…it’s like I’ve been displaying those for forever." 

“So what caused you to notice a difference, then? How did you get diagnosed so early?” I ask. 

“Well, now that would require a memory,” she says and lets out a little chuckle. 

“It’s okay if you can’t remember.” And it is okay. Especially because Kay launches into stories about her mother, Hazel, that she remembers with beautifully vivid detail. Hazel was also diagnosed with Alzheimer’s disease. 

“I don’t think she was diagnosed with early onset for the very reason that nothing she was doing was unusual for her. She’d always been a space cadet. Always silly. We had a hard time knowing something was wrong because she was a fruit loop. She always had her wig on the wrong way and we’d get behind her and fix it. I mean, really. I could write a book on Hazel."

Hazel had two sons from her first marriage when she met Kay’s dad, Ed. Kay was the only child they had together.

“They had a wonderful marriage and it was fun to watch them together. I think for him to have a child and have it be a girl…he thought I was the best thing. I remember being in my footie pajamas and he’d put my feet on top of his shoes and dance with me like that. It was so fun."

Kay’s dad died of a brain tumor when she was a teenager.

"I remember in junior high getting called to the principal’s office and I just stared out the window at this big blue sky because I knew he was going to tell me that my dad passed away and I couldn’t bear to look at him. But I am embarrassed and sad to say I didn’t go through the deep sadness at that point. It was much later. I was so in my own little world. It was all about boys and parties. One of my favorite people at the time was a black basketball player, Jean Baker. I thought he was hubba hubba. I remember when my dad died and he found out, he accompanied me to my locker and helped me get my books and go home. When I came back to school he would walk around with me a lot and said, ‘I know people are trying to be nice, but if you just want to be yourself or be alone, let me know.’ He showed me so much kindness. Goodness. He was a hunk a hunk of burning love. Back then there weren’t many mixed relationships and I look back and think, 'Who cares? What was your problem?!’"

“So whatever happened to Jean Baker?” I ask.

She grabs my hand and looks at me with mischievous grin.

“Do you want to see him?”

We make our way through the craft studio and into a walk-in closet where Kay pulls out a yearbook. She searches for this hunk of burning love. Before she finds him, Kay points at a photograph of a young woman dancing and says, “This girl…she got busy in a lot of back seats, if you know what I mean."

I love this woman. 

And finally, there, right in the middle of the page is Jean Baker.

She’s right. He is a handsome devil. 

I ask Kay to tell me more about her love life. She met a man named Steven when she was working as a receptionist at the local news station in Davenport, Iowa. He was enrolled at Palmer Chiropractic school and was…wait for it…Australian. 

I blurt out, "WHAT?! You got to marry an Australian? Sorry, I just have a weakness for accents."

"Oh hunny, me too."

Kay and Stephen had 4 children: Jason, Jennifer, Carrie, and Josh. Steven worked at a chiropractic office in LeMars, Iowa and they bought a ranch house on an acreage. Kay recounted fond memories of the kids’ chaotic bathtub times, riding around on four wheelers, and building a deck.

“There were some really good times. I would say that I loved him, but I was never in love with him. I loved the kindness of him. Very, very nice man and I love him for being the father of my children. But after 20 years we split up and he remarried."

“Was that completely soul crushing for you?"

“I don’t even remember how I found out. I had to find a job and that was hard. I had to go through a bankruptcy. We struggled for a while, but Steven helped out once he could. I think I have to blame myself because I was so wrapped up in the kids and he wanted to go do things. He wanted to go places. ‘Let’s do this’ and ‘Let’s do that’. I was president of the PTA. I ran for school board. I just didn’t have time for him. I look back and everyone felt so sorry for me and I thought, ‘Uh, no. This is me. I did this to myself.’ I think initially I was a good mom and a good wife but somewhere along the way he was priority number 5 instead of 1, and that’s not the way it’s supposed to be. Interestingly enough our kids and his new wife's kids were friends. And happily. There wasn’t any side taking. I mean, after awhile it was so obvious that they were perfect for each other. I was so grateful for how kind she was to my kids. And now we email. We see our grandkids together sometimes. We all made our peace."

Kay finds a photo of her with all the kids and grandkids. She gushes over each one, but stops several times to talk to her cat, Pipi, who has curled up on her desk. She tells me this is her sanctuary where she makes cards, watercolor paintings, and cuts out collage material. 

"I could be in here all day long. Sometimes I am!"

“This one says, ’The beet goes on’…get it?"

  "This is a watercolor I did. I think this is what I will see when I die. I'll walk right through that little garden gate and meet God."

"This is a watercolor I did. I think this is what I will see when I die. I'll walk right through that little garden gate and meet God."

I start to ask her some questions about Alzheimer’s disease but as we’re talking, she keeps interrupting herself and getting distracted by the birds outside her window. She’s aware of this and apologizes, but right now I find it nothing but endearing. She begins to talk about her mother again, describing a visit to see her towards the end of her life: 

I’m sitting here in awe of Kay's positivity and outlook, which over the course of our coffee and conversation, she has attributed entirely to her faith and sense of humour. It has to be scary sometimes though, right? 

As a cat lover who is friends with many other cat lovers, my heart is exploding in my chest as I watch Kay and Pipi, imagining that little paw pointing out crossword puzzle words. Thank God for animals. Pet therapy is legit.

"I think when you’re going through some kind of dementia, you need to have a sense of purpose. The things that I’ve put off, I can’t keep putting off. I’m learning to quilt. I have a list of things I want to accomplish and that’s one of them. I want to keep watercoloring. The people who say to me, 'It’s too late'…I want to convince them it’s never too late. My daughter once sent me this thing that said, 'You know all those things you’ve been wanting to do? You should go do them.' Isn’t that great? You have to have a sense of joy."

So, what does Kay want people to know about Alzheimer's?

 

“It doesn’t have to be the beginning of the end of your life. It’s the beginning of a new experience that you are a part of. We tend to look at the end of things in our later years, but there are still new beginnings. We just have to focus on that, I think." 

 

If this story tugged on your heartstrings and you want to send Kay good vibes...

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Shelley

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Shelley

planning for the journey ahead when Alzheimer's sets in early

Shelley was diagnosed with Alzheimer’s disease at 48 years old, which is relatively the same age as my own parents. Shelley and her husband Wes have two daughters, just about the same ages and my sister and I. As I sat with them at their kitchen table, I thought about how easily this could be my family. I tried to imagine what it would be like and I couldn't. But I reminded myself that is the whole point of this: to enter into the story. To not have to try and imagine, but to hear and see first hand. 

When I left their house, I got into my car and felt my chest tighten. Almost immediately waves of hot tears began their descent from my eyes, crashing into my cheekbones. I internally berated myself for being ridiculous and grossly empathetic, but in all honesty...it was sad. What I heard made me sad. There were two parts from our conversation that stuck with me for days. You know how you have a string of thought that knots up in your brain and you can't stop trying to work it out? That.

One--we all know that partners and spouses take care of one another, especially as they age. But being the caregiver for a loved one with dementia possesses a cruelty all it's own. They have a front row seat to closely watching the person they know better than anyone else slowly disappear into a shell of someone they used to know. Think about this: partners typically have a whole lifetime's worth of shared memories and experiences that tie them together and make up their relationship. Essentially, they are co-rememberers. Nostalgically recalling memories is a source of comfort and happiness for many people, but dementia takes that away. As a caregiver, it's like you become the sole memory keeper. It makes me wonder,

IS THE PAIN OF NO LONGER HAVING YOUR CO-REMEMBERER LIKE NO LONGER HAVING THE PLEASURE OF MEMORY ITSELF?

How do people cope with that? How much do caregivers bend before they break? How can we help partners who are both fraying at the edges? 

Two- Shelley spoke about how crucial routines are for coping with her Alzheimer's disease. However, she mentioned that the people she sees in the gym and cafe she frequents daily are completely unaware of the fact that she has Alzheimer's disease. Perhaps this gives her a sense of freedom and privacy. Maybe she doesn't want anyone to know. Maybe the fact no one notices provides assurance and comfort that life is normal. That she is normal. But how many people do we encounter in our lives at the gym, in our workplaces, community centers, churches, and neighborhoods, who are living with dementia and we have no idea? When we see someone get confused or agitated, are we quick to write them off as a crotchety or senile? If we knew more about dementia and how it manifests, would be more intuitive and understanding? Would we find ways to tailor or personalize our interactions with our service to that individual?

Although I have mixed feelings and opinions around the concept of "raising awareness", my hope is that after hearing this story, you will find yourself compelled to do just that.

Meeting Wes & Shelley

Wes and Shelley invite me in and we promptly sit around their kitchen table. It’s only my second time doing this whole interview thing and it feels a bit more formal than I’d like it to this round. I try to compensate by being overly bubbly, but it's not flowing. I’m nervous. Shelley seems a little bit nervous, too. I guess we'll ride this out together. 

Shelley has a very natural beauty. I admire her long, white hair, which is neatly pulled back in a ponytail. Wes seems stoic. Sturdy. I like them. 

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Shelley and Wes met while they were both working at a bank in Marshalltown, Iowa. They have a daughter Elizabeth who is in the military and stationed in Georgia. Their other daughter Nikki is 5 years younger and in college. “They’re both very smart and talented girls. They've got some good genes in them. They get it from their dad,” she says with a giggle. 

I ask her to tell me what memory she treasures the most and what she’s most proud of herself for. Shelley gestures to Wes and says, “Oh, probably marrying him.” These two are celebrating 25 years of marriage this year. The guy did something right. It is very apparent to me that he has a wife who adores him.

We talk about how important routine is for Shelley. Having the same daily rituals provides stability for her and Wes.

"Every day I get up, eat something for breakfast, go to the gym, and then stop and get a coffee on my way home at Grounds for Celebration. That’s my treat. Sometimes I pick up some grocery items. I go home, take a shower, and make some lunch. I do have cats to take care of. They’re adorable. They’re bossy. Well, Cocoa is the bossy one. Right now, I mostly feel like a normal person. There are some days I feel different. I wish I didn’t have the disease, but I do, so I cope and deal with it the best I can."

“When you got diagnosed, what initially helped you the most?” I ask.

"What happened that led to the diagnosis?" 

Wes continues...

"Then a million things happen. 23 things actually have to happen as a result of that diagnosis. 23, that’s my number. There’s a whole series of medical, issuance, legal, financial things you should do or consider, at least. That’s what the book I’m writing is about."

I’m sure this is something Wes never wanted or anticipated being an expert on. But after enduring the post diagnosis process with both of his parents and now his spouse, I’m thankful that he’s using the knowledge and experience he’s gained to help other people who have the same bomb dropped on them. 

I ask Shelley about her transition out of working:

Jesus, this isn’t fair. I listen intently while trying to coax the lump in my throat back down. Something needs to change.

"I’d say the disease affects the support person almost as much as it does the person who has it. There is a massive, massive impact to the support person and no one really understands that unless they’ve been in the situation. I’m lucky right now that she can do her routine. I go in to work at 5 or 6 in the morning so I can get back by 2 or 3. By that time, she’s really only home alone for a couple hours. Just to keep me sane and focused on something else, I went back to school and started some welding classes at DMACC in the evenings. But that is going to be increasingly difficult to do. I’m at the point now where I’m looking for positions, hopefully within the place I work now, that will allow me to stay home with Shelley. There will come a point where I’ll need help all the time. The time, effort, and money that is involved in this is just massive."

Wes explained that the emotional and communal support through Alzheimer's support groups is great, especially at the beginning, "But it’s the tip of the reality of this iceberg. If someone could say, ‘Hey, let’s sit down and put together a plan that’s specific to you and tries to fill in all these logistical gaps.’ That would make a world of difference." 

My mind flashes back to statistics I learned at a recent conference about caregivers:

It baffles me that with numbers like this, there are people who are offered no navigational support and feel as if they are facing a “horrible, horrible void of nothingness." 

As for Shelley,

Ironically, the younger someone gets diagnosed with any form of dementia, the more aggressive it tends to be. The speculation now is that Shelley probably had the disease in her teens or twenties, since research indicates it likely develops in the brain 20-30 years before diagnosis. Shelley’s Alzheimer’s will continue to accelerate and the drugs she’s taking could help slow the acceleration, but she will live with this for the rest of her life.

Alzheimer’s disease is the only cause of death among the top 10 in America that has no cure or prevention. However, there are serious efforts being made in the field of research. We need to understand what is happening in the brain before someone is diagnosed. Please consider being a part of a study. This is a wonderful and practical way you can take action to address dementia rather than just becoming knowledgeable about it. For more information, check out Join Dementia Research (UK) and Alzheimer’s Research Center (US).  

If this story tugged on your heartstrings and you want to send Shelley good vibes...

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