NORTH BATTLEFORD — Everybody has a story – and that story is always changing.
Since we first featured 44-year-old Lori Michaud’s story in April of this year, she has decided to move on to another stage in her life, which means relocating to a place where she can focus on enjoying her moments.
The former principal of École Père Mercure, who was diagnosed with young onset dementia at the age of 40, has sold her North Battleford home and will be moving to Prince Albert, where her brother lives. With a home in a Caleb Village currently under renovation to accommodate her service dog Sadie and her cat, Michaud plans to spend time with her nephews – and just generally enjoy life.
She has been living independently, with the help of her service dog, who she got as a rescue dog when she first moved to North Battleford from Alberta and who she had trained as a service dog after her diagnosis. Having given up driving, Michaud has used Sadie as a “second brain” in her outings and errand running, keeping her safe in traffic, and acting as a focus when under stress.
She had concentrated on keeping herself busy, but that’s not a priority anymore.
“I'm no longer looking to have that time jam-packed because that, to me, also indicated I was capable, and letting that go was almost giving power to the disease,” says Michaud. “For the longest time, that's how I saw it – if I didn't do as much as I always did because dementia was taking over. It took me a while to find my balance in that.”
Living in the moment is relatively new for Michaud.
“When I was still working I wouldn’t have known what it meant. I was a planner, I was an organizer, I was a goal setter, I was future based by all means, everything was about what will we do tomorrow or where do we need to get the kids to by such a date. Never much interested in today.”
It wasn’t until she was diagnosed with dementia that she began to think in those terms.
“I think it was when things started going wrong. I took a year off work and worked with a great neuropsychologist. When I went back to work I kept it for a little while then got back into the routine and back into being me. It was never about the moment and sometimes I used to have a hard time adjusting to that. Now I am quite good at it. I don't have much for plans other than appointments and I don't cancel my appointments, I'm very good about sticking to what I'm committed to.”
She laughs, “Heaven forbid I would have an afternoon with nothing, now it’s fantastic. I have a nap, do whatever I feel like doing, it's probably something other people should be doing, not waiting until you're sick to feel like that, until you’re forced into it.”
Moving into the Prince Albert Caleb Village is part of accepting that the disease is progressing, she says.
“It’s a progressive illness, I have to accept that. It means things will change.”
Fighting the changes is exhausting, Michaud says, and she’d rather be tired from spending time with family or other enjoyable activities.
“I'm sure lots of other people with dementia would see it the same way,” she says. “Keep your energy for the good stuff, especially when you can.”
Along with cognitive difficulties, Michaud experiences flare-ups of total body stiffness and pain, most recently in July. It’s become clear, she adds, that these physical setbacks are also followed by a cognitive decline.
While she is accepting of the fact that she has moved from the early stage to the mid-stage of an illness called Lewy body dementia (named after the doctor who identified particular protein deposits that develop in nerve cells in regions of the brain involved in thinking, memory and motor control), her vocation as a teacher still calls her to use her experiences to help educate others.
This month is being observed by Dementia Alliance International as Dementia Awareness Month, which includes all forms, because there are many individuals who have a dementia other than Alzheimer’s disease.
There are more than 80 different kinds of dementia, says Michaud.
According to the Mayo Clinic, Lewy body dementia is actually the second most common type of progressive dementia after Alzheimer’s.
Michaud would like to see more awareness among the public about dementia, especially the fact that it is not just an older person’s disease.
“It's not a disease of age and people need to understand that,” she says. “There’s a whole life that happens before you get to end stage and it can be many years.”
Which makes it something of a conundrum when it comes to awareness.
“I think people are diagnosed more quickly than they used to be, and it’s gaining some ground on the awareness side, as far as being less hidden in the closet. People are talking about it more, but I really don't have the answer to how people are supposed to be aware.”
She explains, “You can't tell looking at me and, half the time, you can't tell talking to me and I don't know what the trick is for people to be more patient, sometimes, because it's not something you can quickly verbalize at the doctor’s office or at the grocery store.”
It may be a matter of people being more compassionate in general. Being in less of a hurry in life would be helpful whether they are interacting with someone with dementia or not, says Michaud.
Dementia in younger adults is not something most people even give thought to.
“I can say I have dementia and people won't clue in,” she says. “I’m young and look okay. They don't have an understanding of what dementia is until end stage and you're 85.”
She adds, “I sometimes think people don't know what I'm talking about if I say I have dementia or I’m off work because I have dementia. I could say I have Alzheimer’s and then people would clue in a little more, but I don't have Alzheimer’s.”
She says, “I just want people to understand that there's more to it than that end stage. In the early stages of dementia, you're pretty functional. A lot of people still work. I did. It doesn't mean you don't struggle, but you can still be quite functional … I'm still quite functional. I just want to make it a little easier on myself.”
Dementia isn’t just the perception that we see on commercials, says Michaud.
Commercials we saw in the past few years really did dementia a disservice, because that’s not all dementia is, she says, and there seem to be fewer of those commercials on television now.
“There used to be more than there is now because I think we're starting to realize the picture of the older person doubling up on groceries is not all that accurate or fair to those of us who live with younger onset,” says Michaud. “It would be nice to get more publicity out there of what the illness is all about, not just this preconceived notion of suffering and being somewhat clueless.”
Michaud stops and laughs, “I can be clueless, but not all the time yet.”
She says her sense of humour is still intact most of the time. She looks back on a recent incident – when she was “clueless” – and laughs.
“After a while you think, ‘Shoot! Where does this come from? How does this happen that you turn into this, so some times you just have to laugh.’”
She says, “I know there are people who suffer,” even while she prefers not to use that word for herself. “It’s not pretty. There are hallucination or delusions, not being able to communicate. It's unfair to paint a picture that this is not that bad, it's hard for some people depending on what stage you're at.”
Dementia is a difficult concept to grasp, says Michaud.
“Your brain is going backwards, like when you were a kid when you didn't have the ability to think through, plan out a meal, you’re brain wasn't capable yet.”
When she falls into a moment of dementia, it’s like being a child who doesn't know they are doing something wrong because they haven't learned otherwise or they don't have someone there at that moment to correct them.”
It can be described as “unlearning” things, she says, but it’s not about forgetfulness.
“I don't forget. I can be confused, but not like Alzheimer’s. That part of my brain hasn't lost a lot of neurons, so to speak.”
She does explain, however, “Forgetfulness is part of it in the sense that I don't usually have a clue what day of the week it is, I can’t pin things down when they happened, I can’t tell you what I ate for breakfast. So my memory is definitely failing me, but not in the way that affects somebody with Alzheimer’s … My processing is very slow. It takes me longer to find what I'm trying to say or find what is stored in there as a memory. It doesn't mean it's gone, just harder to get at.”
Other symptoms include hallucination.
Michaud has had hallucinations in the past, and she hears things.
“It’s not too bad because it’s actually pleasant music,” she says about her auditory hallucinations. About visual hallucinations, she says, “Sometimes I see dogs. Sometimes I'm walking two dogs … and actually Sadie is my cue that the dog is not there because she would have a fit if there was another dog walking with us – yet I can see it clear as day.”
In the early stages of the dementia, Michaud explains, there’s some part of you that knows when you’re in a moment of dementia. She could catch on that she was “off” and she could correct herself.
“But I can't anymore, that time is passed, or if I do it's well past the event. Now it's someone giving me cue that I am doing something wrong,” she says. “I don't have a clue and I'm not unhappy about it. It's an entirely different experience and you can't imagine how does the brain go there and what's happening with those neurons that allow me to think that what I'm doing is fine but it's not. I don't know.”
Nowadays, Michaud’s independence is no longer a positive thing in her life. Keeping up with looking after the house she painstakingly restored, planning meals, shopping for groceries, cooking – they are starting to overwhelm her.
"I can go into a grocery store and come out with 50 things and none of them go together, just because the whole thought process of ‘this goes with this and this goes with this,’ and even picking recipes, just seems to tire me out."
She adds, "I've had too many close calls in the kitchen, so I am really looking forward to meals [at Caleb Village]."
In her new home, she will have assistance such as housekeeping and will no longer have to do her own food shopping and cooking and worrying about whether she is balancing her diet.
“Having that off my list of responsibilities is huge,” she sighs.
Having someone to do the cleaning will also be a relief. She was having trouble in North Battleford finding a regular cleaner.
“We think it's easy to get services to help, but it's not,” she says. “It really just isn't that simple, so I am looking forward for it to be in someone else's hands … I'm very fortunate to have the financial means to afford it.”
She is looking forward to less stressful living arrangements.
“The disease in itself is enough of a struggle. I don't need to add to it. The idea is to have time to do things that are enjoyable and not be too tired for those things. To go out walking, go to the coffee shop, watch my nephews play volleyball, I want energy for that, not for planning meals or cleaning.”
When she went to view the condo a few weeks ago my brother and sister-in- law, she thought, “Why am I not doing this?”
She says, “The decision was quick. I came back and the house was sold in a week.”
It was tough to sell the house, however.
"As hard as it is, because I renovated this house myself, it's pride in knowing that I'm paying it forward to someone else and someone else will enjoy it and [pride in knowing] I succeeded in my little project house and that it’s time to move on.”
She expects the qualities of her days to be better.
“Whether it prolongs the good days no one knows,” she says, but adds she is looking forward to being less isolated and spending more time interacting with others so she can keep up her communication skills.
She also considers herself fortunate that her new condo will allow her to bring her animals with her. In addition to Sadie, her service dog, she also has a cat.
“That’s probably what I hang on to dearest, is being able to manage my pets, because when you lose that ability then I lose my comfort of and help of my service dog and companionship of the cat.”
She does everything she can to make sure everything in place to look after them.
“Reminders on my door to check the weather before we go out, make sure we have the backpack, make sure she doesn't overheat – that’s all part of the game now."
But while sometimes moving into the mid stages of dementia means questions about whether or not you can still care for a service dog, Michaud feels her relationship with Sadie continues to be an asset.
“I experienced one of the greatest benefits of having her when I was at my appointment last week,” she says. "It was a new specialist and a new clinic and new things for me aren't easy."
She was told during her appointment she needed to have blood tests done and she could have them done downstairs in the same building.
“Off we go downstairs and I present myself, ‘I’m here for blood work.’”
Because she had Sadie with her, there was already an awareness by the receptionist that something “isn't right” with her, she says.
The receptionist asked Michaud for her paperwork. She didn’t have any, because she hadn’t been told to pick it up at the specialist’s reception area, but she wasn’t catching on that she needed any.
“She’s looking for paper, I don't have any, I’m starting to get annoyed, she's trying to judge how she's going to communicate with me [because] I’m obviously not getting it.”
The nurse came to the desk, asked Michaud to sit down and began helping the receptionist look for paperwork. Meanwhile, Michaud was thinking, “Jeez, you guys, I don't have any paperwork. Stop trying to figure it out.”
Finally the nurse asked for Michaud’s health card and went to check with the specialist’s office.
When she came back, she had the paperwork.
“I have to commend them for their patience,” says Michaud, and it wasn’t until sometime much later that she realized she had been causing any difficulties.
“I was very thankful for having Sadie provide a visual that a softer approach might work with me rather than getting frustrated with me and irritated with me because I look just fine.
“Rather than the situation escalating, Sadie acted as a bit of a buffer there for me, so I am going to hang on to that as long as I can for sure.”
She adds, “It's a gift. She can't do some of the things that would also come in handy, but what she does give is a tremendous gift.”
Still, Michaud wishes the public were more educated about service dogs. Many people still don’t understand service dogs are not to be petted or interfered with.
Just recently, she was waiting for an elevator alongside a young couple with a child in a stroller when they turned the stroller directly toward Sadie and did nothing to correct the child when she began screaming and waving her arms at the dog.
Michaud moved with Sadie away from the distraction prompting the child’s father to say, “You don’t need to be rude.”
Michaud chose not to respond, but she her thoughts were, “I am not here to entertain you.”
“I get a lot of that,” she says.
She would like to see children learn about service dogs and learn how to behave around dogs in general in school.
“Not just service dogs, but any animal should be treated with respect,” she says.
In the case of pre-schoolers, she says, “It’s not the kids’ fault, it’s the parents’. At no point am I ever in an area where there are no parents. [When children taunt Sadie], there's always a parent in the area who’s not doing their job. And when the parent encourages it, that really bothers me.”
Having her story published earlier this year did help, she says, but more education is certainly needed.
As an educator, Michaud also plans to contribute to research into dementia, in the hopes that a cure or better treatment can be found.
“Each form of dementia has its own set of symptoms and challenges and at some point they all look like each other,” she says. “When enough of the brain is impacted they will all eventually look alike, but in the beginning stages, they each have their own symptoms.’”
Unfortunately, scientists can only take their guess at which of the over 80 different kinds of dementia one might have.
“In all honesty, it's a bit of guesswork because, until you're dead and they can autopsy your brain, they are still guessing at what parts are really affected and what truly is going on in our brain.”
Michaud says, “I feel for neuroscientists I really do because how can you get a grasp on an illness that you can't study alive?”
Along with having prepared her will and her power of attorney, because she has no idea how long she will remain in the mid stage of her dementia or how many years she has left (“It’s a very big unknown.”), she is planning to find out what one has to do in Canada to donate her brain to dementia research.
To the public wanting to understand more about young adult onset dementia, she recommends the book and the movie Still Alice. The film is based on a book written by neuroscientist Lisa Genova who decided to use a fictional story as a way to give people a better understanding of neurodegenerative illnesses.
“It was hard [to watch] the first time because it was that close to what I had to go through.”
She adds, “It is different thing to read it. There’s so much to read, but there is very little to grab on to as a visual, as a story like that, and it was well done. It's a way for people to learn about the illness. If they have a family member [with dementia] and want a way to feel closer or so they can help more, then that’s a great resource.”
