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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