Christine Aken(formerly Thelker) has worked her whole life in dementia care. Initially advocating for her patients, Christine soon found herself in a position where she needed to stand up for herself when she was diagnosed with dementia in the year of 2014. Now she lives with her husband in Canada and writes a blog about her life. In 2020, she released a book called “For This I Am Grateful”, which is composed of her life journey since getting the diagnosis, as well as how that affected her view on dementia care. Told she only had three to eight years left to live, she is now ten years into the diagnosis – and can find joy and meaning in life with a terminal illness.
Can you tell me about who you are and your advocating work?
I am Christine Aken. I just got married at the end of December, so my name has changed. I am going to be 65 this week. I worked in dementia care, that was my career. So I sort of understand it from both sides. I advocated back then for the patients. Now I advocate at a higher level for everyone affected, not just people in care.
I am an avid rock hounder and love to be out finding agates and rocks. I like to be out in the woods. That's a very peaceful place for me, it calms my whole nervous system to be in nature. I have a lot of plants in my house for the same reason. I am active, I am busy. My advocating work means a lot to me because I like to make a difference for other people. Writing is a way of communicating [for me] when my words don't come so easily in basic back-and-forth communication. I lose my words, I lose my thoughts, I can't get them out the way I want them to. Writing allows that to happen. That's why I write. My book that I wrote – I wrote it for the sole purpose that if it could help just one person, then I wouldn't end up having this illness for no reason. That it had to matter at some level.
How does writing help you in your life with dementia?
As my husband says, it is so comical that sometimes he gets a book from me. Meaning that sometimes, when I am really struggling to make him understand what I am trying to say, I will end up writing it [down]. Most people don’t know that it's two different parts of the brain that you are using. If I can write it, it takes the frustration out of somebody trying to [understand me] because it takes me so long to get my words in an order that I want them to and to be able to find the right words. Somehow when I write, they are just there.
Has dementia brought something positive to your life?
Not many people ask that question. I always say it was a blessing that I didn't see coming. And I say that because most of us spend our life on a hamster wheel. We put our jobs and careers ahead of everything, and we forget to pay attention to little things that really matter the most. When I was diagnosed, my whole world just stopped. You have to find your way again. People look at you differently. People act differently towards you. And you have to rise above all that. Unfortunately, not everybody gets there, but when and if you do, you find out there are a lot of blessings.
I have met people all over the world, people like you sitting in Amsterdam. If I hadn't gotten this diagnosis, I wouldn't have had the opportunities to meet the people I have met; to try to make a difference in a real way for so many people.
Most people don't ever get the opportunity or take that opportunity. It allowed me to relook at what was important in life. To really appreciate it every time I go out to the woods and I sit there, and I wrap my arms around a tree and I just close my eyes – It is almost like you feel the heartbeat of the tree, and you hear the birds, you hear the leaves rustling. It strips you down to be able to feel and understand all of that. Understand our place in all of that a little differently. Instead of just being on that wheel going a thousand miles an hour. To where? For what?
I am very blessed. Truly fortunate to have the support I have, and to have so many incredible people come into my life through this journey.
How has dementia changed the way you live your life?
It is going to be 10 years this fall since I was diagnosed. The first couple of years were dark and difficult, but the last 7 years [have had] more blessings than not. I don't want to discount the hard days, because they are hard. And I don't want to discount the fact that even on the days when I don't look like I have to work to have a good day, I am working at it. It is just that nobody can see the work that is going on from the inside.
We [people with dementia] live more in the moment. I am not looking five or ten years down the road. I am living now and doing the things that bring joy and happiness now. Cause that's what matters.
A lot of people are afraid of dementia. They are afraid because they don’t know what to say, they don't know what to do. I always tell people: I am still me, I just do things differently, and my brain operates differently. But I am still me.
Do you think you can describe what it is like to live with dementia to a person who doesn't have it?
I always say it is like my brain runs the show. It decides what information it keeps and what it tosses. I don't get to decide that. So if I forget something, my brain doesn't think it is important for me to remember. You have to learn to just be able to find humor in it all, laugh, and go: “Well, that's not happening today because I don't even know what it was supposed to be!” You have to be able to sort of laugh at yourself. You don't want people mocking you and making fun of you, but [you want them to] laugh with you, cry with you when you need them to. There is almost freedom in it – because I no longer have this expectation of myself that I should always be happy.
It is probably one of the reasons why I advocate as much as I do, and work as hard as I do. We have it all wrong [in society] as to how we do care, and how the dementia units are organized. We take away people’s abilities to function at all. They still have abilities and if we took the time to communicate when they are struggling, we could learn what their needs are and we could meet those needs. But society is driven on this time wheel – they[dementia units] don't allow the time for the proper care. Then there is the stigma created because people just talk about the end stage [of life] that they see in care homes. They don't see all the life before [the end]. They don't understand that there could be a lot more life still if we didn't dehumanize people when we put them into care. If we actually cared for them, [this wouldn't happen]. All we do is keep them alive in those facilities. We don't care for them and their needs. That's the cold truth.
I understand that it is easier for people just to do [certain actions] for us, because they are frustrated that it is taking us longer or they think we are just not getting it, or [that] we don't understand. Let us figure it out. You have to find the patience. I always use the analogy of the toast and the toaster. It doesn't matter if the toast goes in upside down, it will still be toasted. So let them [people with dementia] put it in upside down.
Be their cheerleader that they are still doing it. And that is the problem in care homes – there is no time. If someone is struggling to put their shirt on, you take it away from them because there is no time. It is like: “Hurry up! We have to get you to breakfast!” So you do it for them. You keep taking their abilities away. We tell them they can't pour themselves a cup of coffee even though they have done that for 70 years, because [we think] they might burn themselves. A) the coffee is never hot enough to do that in those places B) If they spill it, it can be cleaned up. We shouldn't take people’s abilities away, but that is what we do.
But they[society] presume that from the minute you are diagnosed, that that is what it is. That you have no abilities left. That you can't think for yourself, that you can't do [things] for yourself. You shouldn't drive, you shouldn't go out alone. You shouldn't, you shouldn't, you shouldn't! Yeah, but you should be living. Go live your life till you get to the end stage. That is what you should be doing.
We don't tell people with cancer you shouldn't. We tell them: “Go do your bucket list!” Why don't we do it with people who have dementia? Why do we think we should just lock them up because they are [presumably] no longer able to do anything?
What do people need to understand about having a terminal illness?