We knock on the door, and a young woman opens it with a charming smile, asking us to come in. With the sun shining bright through the area windows, and the living room table decorated with a large fruit platter and a bowl of chocolate mini eggs, the stage is set for a wonderful morning. The two siblings we’re meeting, Darrelle and Justin, welcome us with open arms to discuss how their mother’s journey with Alzheimer’s Disease has shaped and altered their lives.

“She was the kind of lady where when she walked into a room, she brought light. Mom was very family oriented, very vivacious, and she had a great sense of humour…very committed to those she was around and cared for, for sure,” Justin said of his mother. “To me, cooking and baking is like family. That’s one thing that my mom has imprinted on me for life – my love of cooking, and my love of entertaining people with food. And the cleaning thing. I’m definitely neurotic with cleaning,” he added with a laugh. Her influence on his professional life is clear. As a part of his teaching portfolio at Archbishop Jordan High in Sherwood Park, which also includes AP English and Leadership, he teaches a high school Foods class. He also created an Alzheimer’s Awareness Day at his school. “It’s ironic that people often forget about Alzheimer’s, but we’re trying to bring awareness to it again.”

“She was the kind of lady where when she walked into a room, she brought light” – Justin remembers his mother

Darrelle remembered her love for those in her life. “She was an excellent cook in her day. She loved being around family and friends; there wasn’t anything she wouldn’t do for any of them. She was one of a kind. She always had a great sense of style, too; she was always dressed to the nines. She also had a contagious laugh – it was quite infectious.” According to Justin, Darrelle has inherited that laugh. Having heard the hearty, room-filling belly-laugh a couple of times already, it would certainly be hard to argue with him about that.

They both got their compassion and empathy from their mother, too. “It’s almost to a detriment, because I feel so empathetic towards other people,” Darrelle added. “I feel like I almost take it on as my own, which I need to work on. But I also don’t want to change it completely, because I think it’s good to be able to feel that kind of compassion for others.” Being in her position as a support group leader in the Alzheimer’s Society, it’s something that she deals with daily. “Not only am I leading discussions around it, I’ve walked those journeys. I know [what it’s like] hearing ‘I express my sincere condolences.’ That’s fine, and as a society we’re taught that’s the right thing to do, but when somebody with my experience is going through it, that’s not exactly helpful. I know it’s what we say but once you go through it, it almost feels empty because you’re going through an extreme pain, and an extreme loss.”

Darrelle and Justin remember some fond memories with their mother

In 2009, when she was only 51 years old, Laurie was diagnosed with mild cognitive impairment (MCI). MCI is diagnosed when there are cognitive changes present beyond what would be expected for a person’s age, but they do not interfere with day to day function. It is sometimes thought of as an “early stage of dementia,” but although those with MCI are at a higher risk of developing dementia, not all progress. “Prior to 2009, she drove us around a lot,” said Darrelle. “I noticed [that] just driving around a city that she spent most of her life in, she would often get lost.” “And it was before the advent of the very popular GPS known as the iPhone, so the idea of traversing a city was new to us,” Justin added with a chuckle. “It was a lot of simple mundane tasks that would happen on a regular basis,” Darrelle continued, “She kept asking us to write things down in a calendar, and at the time we chalked it up to ‘She must be overwhelmed and she’s going through a lot right now.’ She just had a divorce, and she battled depression as well.”

“I remember the day we found out she was diagnosed [with Alzheimer’s]…that was a tough day,” Darrelle said. Their aunt took their mom to the round of testing that led to her formal diagnosis, and asked Darrelle and Justin to meet them in Blackfalds, Alberta, where they were visiting family. “I remember she had literally gone outside for a cigarette, and our aunt looked at us and [said], ‘So, she got tested yesterday; she does have dementia. She’s speaking suicidally, so that’s why we’re going to visit family now.’ It was all of this information, and then [Mom] comes inside from her cigarette break and we’re all trying to play it cool, but good God!” Darrelle said with a laugh. “It was not an ideal way to learn that by any means, but I don’t know that there is an ideal way.”

Darrelle shared with us a number of journal entries she made during her journey of providing care and support for her mother. “I had a great visit with my mom last week. She said she loves me back, which was huge and totally made my cup runover.”

The next day, their mother found out that they knew about the diagnosis, and ran away for a short period. “I was thinking, this is a lot to deal with. I’m just going to put it away for a little bit because I have finals right away, and then I’ll come back and deal with it.’ Because it was so much. I didn’t even know where to begin with that,” Darrelle said of the situation. “This was before mental health became such an important thing,” Justin added. “The fact that we internalized that, looking back, [was] not healthy. There were a lot of unknowns that they had to deal with at the time, as well. The first question was, ‘Are we genetically predisposed for it? We’re barely even capable adults, and we were expected to take on the role of care giver.”

That was not the only thing that worried Justin. “I show a lot of similarities with my mom, so immediately I felt as though if anyone in the family is going to get it, it’s going to be me. That’s scary because doing a million things as a teacher, sometimes I forget stuff. Every time I forget something, [I say to myself] ‘Is it a precursor? Is my mind atrophying?’ I’ve always tried to be preventative as much as I can; as much as I know how to.”

Justin and Darrelle were given the opportunity to learn about the statistical likelihood that they would develop Alzheimer’s shortly before their mother passed. Their father was in a room with other relatives and a doctor, and Darrelle remembers it vividly. “I was in that room, and I was like, ‘I want to know. Tell me the statistic. I want to know.’ And my dad, being protective, intervened and said, ‘I don’t think you want to know that right now. Let’s not.’ Is that a worry? Absolutely. But do I still want to live my life fullest, whether I know that information or not? Yes.”

Overwhelmed with information at a relatively young age, they sought out the Alzheimer’s Society for further information and support. “I went to my first introductory support group and then from there I took a lot of the Seeds of Hope sessions,” Darrelle said. “It made me feel empowered in a situation where I might have otherwise felt powerless. The timing of the sessions when I would take them were so serendipitous, too. The timing was oddly perfect because we were being equipped with the tools to deal with things literally as they were coming up. We were supported in the best way possible during a really hard time.”

Still, the day to day life of caring for someone with dementia was a struggle. “If I was taking her places I would call in advance, because I feel once people have that information there’s a lot more compassion in how they’re dealing with people,” Darrelle said of taking her mother to places like the dentist. “It’s unfortunate that you have to have… I don’t want to say a disclaimer, but kind of.”

Dentist Day!

Even with support, it can be hard to move past emotional damage, as Darrelle told us. “I was very angry that I now had to be a support for my mom when I felt like she wasn’t much of a mom to me in her most recent years leading up to that. I remember once we had placed her in a facility, going to visit her would take so much of my mental power, and I would be so exhausted afterwards because I was hanging onto all of this anger and other emotions that weren’t serving me any purpose. Until I did some forgiveness work with her. Then I was able to feel like I was present and educate myself, and be the best advocate and daughter that I could be for her.”

“Towards the last few months I think I was half sleeping… because I was getting phone calls late at night saying that my mom had fallen, and I was on some level anticipating the next phone call,” Darrelle remembered the restless nights. “Unfortunately, when she did pass, one of my initial feelings was a little bit of relief, and I had some of the soundest sleeps ever because I didn’t have that worry of the inevitable.”

Darrelle wrote a journal entry a few months after her mother’s passing: “Falling in love with someone and losing them feels cruel. I know she knows how much I loved her, and I hope she’s happy and a beautiful smiling angel. I feel bad that I feel relief that she’s gone. That’s awful. I can be selfish with my time and I feel bad about it. She was my sunshine. I became the woman I am today largely because of her love support.” You can tell I was bawling while I was writing that because the printing gets all crazy,” she said, laughing boisterously.

For Justin, there is one thing that was special between his mother and him. “She always used to read I Love You Forever by Robert Munsch, and I read that to her every time I visited her. I remember the last time her and I visited… I think on some level I knew she was going to pass away sooner rather than later. And I read her the book and I just cried.”

Now both Darrelle and Justin are working to raise awareness of Alzheimer’s, to create a positive atmosphere for people to understand the disease, and to find the support they need to realise that they are not alone. Their message to other young people going through this battle: “She’s still your mom in there. Your mom has Alzheimer’s, but your mom is not Alzheimer’s.” Justin added that “Being able to know that asking for help isn’t a bad thing. Asking for help from family, from friends, from support groups, from whatever is okay. It’s a sign of strength rather than a sign of weakness… If I could talk to myself, that’s something I would say. It’s going to be okay. Talk. Breathe. Don’t let it consume you. Be a little bit selfish with your time. You don’t always have to be a caregiver. You can be yourself.”

Fingerprints don’t fade from the lives we touch, and the memory of Laurie lives strong in those that were close to her. Darrelle shared with us one final social media entry from a year after she passed.

“She had a huge heart. She was willing to do anything for those that she loved. She had a wicked sense of style. From polka dot tops to stylish cacti sweaters, she could rock whatever she wore. Her laugh. It was contagious and could light up a room. She was a great mom and she was ours, and I miss her all the time. I love you so much, Mom, and I wish I could hear your laugh again.”

Laurie Rowland 03/Jul/1957 – 10/Dec/2015, RIP.


Background & Information

The contributions of genetics to Alzheimer’s Disease remains poorly understood as a whole. There is a better understanding in its early-onset (less than 60 years old when symptoms develop) form, which contributes to less than 1% of total cases. Thus far, 3 gene mutations in the early-onset variant have been identified: presenilin 1&2 (PSEN1/2), and amyloid precursor protein (APP).

The genetic basis for late-onset Alzheimer’s appears to be much more complex, with environmental influences apparent. The most established risk factor involves the APOE4 variant on the 19th chromosome, but estimates for increased risk vary by population and age. Humans have two copies of chromosomes (one from each parent), and the risk appears to be higher if the E4 variant is present on both (8-12x increased risk) VS just one chromosome (2-3x). It may be associated with an earlier diagnosis, or a more rapid progression. Despite this, nearly 50% of persons diagnosed with Alzheimer’s lack this variant. In total, over 20 genes have been identified that have been associated with a statistically increased risk of developing Alzheimer’s.

Genetic testing for Alzheimer’s is not common practice, and those who choose to proceed will likely be referred to a medical genetics professional. Although the information may help individuals plan for the future, there is generally a lack of preventative or therapeutic options available to guide decision making once the information is known.

A variety of cardiovascular risk factors, such as diabetes, hypertension (high blood pressure), and high cholesterol levels have been hypothesized to contribute to development of dementia, however results are inconsistent. Many other factors such as excessive alcohol intake, physical/mental inactivity, obesity, depression, and head trauma may contribute as well. Age remains the most well established risk factor.

With these confusing facts in mind, what’s the best advice for prevention? Keep your mind and body active, and enjoy everything that’s “bad” for you in excess, like alcohol and sweets, in moderation.

 References

Alonso A et al. Risk of dementia hospitalisation associated with cardiovascular risk factors in midlife and older age: the Atherosclerosis Risk in Communities (ARIC) study. J Neurol Neurosurg Psychiatry. 2009;80(11):1194. Epub 2009 Aug 19.

Bertram L et al. Systematic meta-analyses of Alzheimer disease genetic association studies: the AlzGene database. Nat Genet. 2007;39(1):17.

Biessels GJ, Staekenborg S, Brunner E, Brayne C, Scheltens P. Risk of dementia in diabetes mellitus: a systematic review. Lancet Neurol. 2006;5(1):64. 

Farrer LA. Effects of age, sex, and ethnicity on the association between apolipoprotein E genotype and Alzheimer disease. A meta-analysis. APOE and Alzheimer Disease Meta Analysis Consortium. JAMA. 1997;278(16):1349.

Lambert JC et al. Meta-analysis of 74,046 individuals identifies 11 new susceptibility loci for Alzheimer’s disease. Nat Genet. 2013;45(12):1452. Epub 2013 Oct 27.

Larson E. Risk factors for cognitive decline and dementia. UptoDate, last updated April 25, 2017.

Sherva R and Kowall N. Genetics of Alzheimer Disease. UptoDate, last updated November 11, 2016.

Whitmer RA, Sidney S, Selby J, Johnston SC, Yaffe K . Midlife cardiovascular risk factors and risk of dementia in late life. Neurology. 2005;64(2):277. 

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