Christine Thelker – I Am Living With Dementia, With Joy and Purpose

This episode is a first for Boomer Living – Christine Thelker is an elder care advocate who has been living with dementia for six years. She is very open about her experience and why she chose to make it public. Christine opens up about the friendships and relationships she’s lost because of her transparency about her dementia diagnosis. She also shares some of the ways her dementia diagnosis has impacted her day-to-day life and capabilities.

Hanh Brown: [00:00:00] Thank you so much to be with us today, Christine, and I’m very excited to talk about your journey and, uh, I’m sure our guests will be able to get a lot out of it.

[00:01:41] And we all know someone who has dealt with dementia. It’s an amazing journey is everything that you’ve been through to live with such positivity. So how are you today?

Christine Thelker: [00:01:52] Great. And thank you for having me. I’m excited to be here. Yeah, I’m doing well. Of course, we’re all struggling because of our pandemic situation and that’s brought new challenges.

[00:02:07] And for those of us living with any type of dementia or Alzheimer’s, it’s highlighted some of our challenges, but I’m doing well.

Hanh Brown: [00:02:16] Great. Thank you for being here. So can we start by having you share some background information? Where are you from? What are you been doing in before we get started on the, your journey of being diagnosed with dementia?

Christine Thelker: [00:02:31] Sure. I live in Vernon, British Columbia in, um, the Okanogan Valley, our wine country here in BC. I. Was widowed early at 57, I then poured myself into a career which was working. On locked dementia units. And that’s where my passion was. Dementia care and end of life care up until my own diagnosis at 55.

Hanh Brown: [00:03:03] So what originally made you want to make your diagnosis public?

Christine Thelker: [00:03:08] I originally wasn’t planning to make it public. I originally started writing to help my doctors figure out what was going on. And so that I could try to understand myself because of course working in dementia, I understood the long-term effects, the end stage. But there isn’t much about the early stages out there.

[00:03:35] So it was really a confusing time. So it was to help myself and my doctors and out of that, I had them saying, you need to share this to help other people. So then I started blogging and it was through all of that. I found dementia Alliance international who really started. Encouraging me in my advocacy work.

Hanh Brown: [00:03:59] Thank you. Thank you so much for doing that. How did you decide to come out and fund up this diagnosis and not keep it under wraps?

Christine Thelker: [00:04:08] I had a lot of people tell me that I just shouldn’t talk about it, but I didn’t want to have to live with that constant shadow hanging over me every day that I might do or say something that would make people question.

[00:04:23] What was wrong with me? I didn’t want to have to pretend that I just am not who I am right now today. And living with what I live with that would be difficult and creates such an enormous stress for myself. But. I just decided that I can’t do that. I can’t live that way. So I have to find a better way. I have to find a way to live with my illness, to be happy and to show people that we’re still people and we’re still happy and we’re still living.

Hanh Brown: [00:04:59] Yeah, absolutely. So was there any backlash from your family or loved ones when you decided to make this journey?

Christine Thelker: [00:05:08] I have lost friendships. They’ve disappeared now. You know, what’s the real truth behind that sometimes I’m not sure is it because they’re struggling, coming to terms with me having the illness and that’s their own sort of internal struggles or is it that they just don’t want to accept?

[00:05:31] That’s what’s happened to me and it’s who I am now because it’s changed me. Of course. I don’t do things the way I used to do. I can’t do things the way I used to do them. You don’t really know why they disappear. They just do. So you have to come to terms with that. And that’s an ongoing, it’s an ongoing issue.

[00:05:55] Those kinds of losses keep happening and it hurts, but you gain new and different and you come to a place where you’re okay.

Hanh Brown: [00:06:08] If you don’t mind me asking. So when you say change, what is it that you used to do and what is it that you don’t do anymore? Do you mind giving some example?

Christine Thelker: [00:06:18] I was very organized.

[00:06:21] I hosted dinner parties, luncheons planned, get togethers for work colleagues and. I would take on all of those things and I multicast all the time, so many things going on. I can’t do any of those things anymore. My days are very planned. I have to really prepare for things, even for this, to be able to have this lovely chat with you.

[00:06:51] I have looked at that every day. For over a week on my calendar, refreshing in my brain that this is what I have to do today, so I can no longer be doing this and then jump to this and jump to that. It doesn’t work. I don’t. Cook the way I used to, I have trouble following recipes and that kind of, those kinds of things.

[00:07:19] I can’t keep track of the order I’m on. So there’s just a lot of little day to day things, but I do other things now. I do other things now, can you share with us some of those other things, I fell in love with photography, so I go walking and I just take random pictures and you know, I go out into the woods and I just explore nature and I take pictures all the time.

[00:07:47] So I have this renewed love of nature, which I had many years ago, somehow last week at busy with family and careers and all of those life things that we take on. And so that has become really prominent for me. Again, I painted for a while through. Journey. I’ve never painted in my life. I actually painted the picture that was used for the cover of my book yet.

[00:08:14] Now I sit down to paint and I can’t paint anymore. So there things change and come and go. I’ve learned to enjoy solitude, which was something that I was never good at. I always liked to be surrounded by people. Now I enjoy my time, my solitude, then I know they say people with dementia or Alzheimer’s are isolated by the, just by the illness itself.

[00:08:42] And then of course, with all the stigma and all the things around that we become more isolated about. In some ways I enjoy myself too.

Hanh Brown: [00:08:51] Thank you for making the time to share your journey. I appreciate it very much.

Christine Thelker: [00:08:56] Oh, you’re very welcome. I’m always happy to share. And I think for me, I just really want people to, to remember that we still have a lot of joy in our life and we still have a lot of happiness and we still have abilities.

[00:09:14] Our abilities may. Change and shift, but we still have them and we should be really encouraged and everything should be done to make sure that we can still have our quality of life.

Hanh Brown: [00:09:31] Absolutely. Overall, what would you say the biggest pros and cons are of making your private life public?

Christine Thelker: [00:09:39] Oh, the pros are the heart.

[00:09:44] Felt connections I’ve made with people around the globe. I have heard from people from all corners of the world and in the last few years, some of those people have become. Real friends we’ve had formed real special friendships. So when people open up to you that way, it’s a real honor. And it’s something that you don’t take lightly.

[00:10:10] So I think that is the good side that it’s allowed me to have new purpose with all my advocacy work. My speaking engagements, my writing, those are all things that were not in my life plan. So they’re gifts. So although nobody wants the diagnosis of dementia and none of us want to have it, we do. So we have to embrace those gifts as they come.

[00:10:41] I think the downside is you have to be able to understand that there is those people out there who can’t look past. Their own stigmas around things. They’re hard on you, but the people that you can’t have it, I think that’s wrong. And, or the people that think you shouldn’t be doing that, like, why would you put yourself out there?

[00:11:06] That’s not that. So you have to be able to sort of grow sort of a tough shield and let it bounce because for every person and every situation that. Is a negative. You will have that person who comes with their heartfelt story and thanks you for sharing because it’s helped them or their loved one. And then that you’re doing the right thing for the right reasons.

[00:11:34] It’s a mixed bag.

Hanh Brown: [00:11:36] It sure is. And thank you for your courage and thank you for your wisdom and shedding light in bringing more awareness and educating people around you.

[00:11:49] what do you do in the advocacy work? And, and why do you find this work so important to you?

Christine Thelker: [00:11:56] Oh my God. The Cassie work is taken me on some incredible journeys.

[00:12:00] I’m a board member of dementia Alliance international, which runs in 49 countries, which is run solely by people with dementia. So that’s quite a big feat. I’m very proud of the work they do through them. I have spoke at the United nations in New York at the convention and state parties for people with disabilities.

[00:12:26] I spoke in Chicago for Alzheimer’s disease international in Chicago. I work with dementia advocacy Canada here in Canada. I work with. I believe my last count was seven different research groups and organizations through various universities across Canada and globally on some big research projects around dementia and living with dementia.

[00:12:57] And there’s a lot of work. There’s a lot of work. People think that I have nothing to do now. Uh, I’m busy. And I have to be really careful of how I manage those things in a day because my brain power, if you look at it like your brain’s a battery, the charge only lasts a limited amount of time in a day.

[00:13:20] So I really have to schedule things so that I can. Contribute in the best way possible that takes a lot of work in itself. So the advocacy is it’s far reaching, working with groups where we’re looking at new ways that technology can enable our lives for those living with dementia and keep us at home for longer to the long-term care.

[00:13:48] Side of things as we age, which is a huge issue. And we work with research groups in government on that.

Hanh Brown: [00:13:57] Absolutely. Wow. What a better person to speak about it than someone going through it. So I think it’s just an awesome thing that you’re doing. So I commend you for that.

Christine Thelker: [00:14:07] Thank you. And that’s one of our big messages is if we’re going to make changes, if we’re going to change the stigma, if we’re going to.

[00:14:17] Change how people view dementia, then you have to talk to the people that live with it because they’re the ones that know. So that’s a really important message in all of it.

Hanh Brown: [00:14:28] Absolutely. So tell me more about the peer support groups that you cohost. What got you started with hosting these.

Christine Thelker: [00:14:37] um, feeling so lost and alone when I was first diagnosed and you sit at home and it’s what now?

[00:14:45] There’s no resources. This isn’t okay. There has to be something for me. There has to be more, I’m not the only one. So I started researching on the internet and I found dementia lines international. And I filled out just a couple minute, little form sent it off and I don’t think it was hours before I had a response.

[00:15:11] So the first meeting I went to, I looked at all these spaces looking back at me from around the globe. And I thought they’re just like me. I’m not sure what I was expecting, but I was so shocked that these were all just people, just like me. I cried so hard that day. And then I laughed something that I hadn’t done for since my diagnosis.

[00:15:37] And I really had laughter because they understood. So then I started really working with dementia Alliance international and really. Doing everything I could to reach those people as they’re being diagnosed and enter those groups. And, and I do a lot of hosting on different groups of theirs. They’re an important piece for people.

[00:16:02] The peer to peer is something that. No other organizations can give you.

Hanh Brown: [00:16:08] True. So why do you think it’s important to have a support group, especially appears as opposed to someone like a therapist, a group of friends, a group of people that you can commiserate with, which is very unlikely of a therapist to helping someone with dementia.

Christine Thelker: [00:16:24] That’s what it is. It’s sharing each other’s experiences. You share your highs and your lows. The changes that you go through the ups and the downs, the family struggles, and it’s a safe place where you can share all of that. It’s a confidential place. You don’t have to worry about what your care partner might be thinking about what you’re saying, or if you’re even talking about them, maybe.

[00:16:51] So it’s a very safe place. I believe therapists have their place. I believe other organizations that have care partners and people living with together and they run these different little programs, have their plates, but there is nothing better than having that peer to peer support where you get validation.

[00:17:17] And where you’re accepted, no matter what state you are, when you come on the call, if you’re having a really bad day or a really rough spell, everybody will rally for you and you will leave that day better than you came. And some days you’re the person rallying somebody some days. You’re the one everybody else is rallying.

[00:17:43] It’s really undescribable, but it’s so important.

Hanh Brown: [00:17:47] It is what a blessing to come across a group of support like that, and just share your life journey together. That’s a blessing. COVID has obviously impacted us in so many different ways in different degrees. So what impact do you think it’s specifically ahead on people with dementia?

Christine Thelker: [00:18:07] In some ways a lot of people with dementia has have been talking about how the rest of the world is finally getting a glimpse into what our life is really about. Because all of a sudden they’ve got stopped just like we did when we got our diagnosis and they had to stay home and they’re isolated and we’ve already been doing that.

[00:18:31] They all of a sudden had to start learning how to use zoom, to host meetings and events and things. We were already doing that. So while the rest of the world was scrambling, we were actually thriving and we were actually. Having to put in more support groups and more times to have meetings because there was a greater need because now a lot of those other groups and organizations that did things within their communities were no longer able to.

[00:19:03] So there was a greater need for us to provide that to people on the other side of it. It definitely has isolated us in many ways more because for a lot of people, those other groups and organizations that they go to those, I don’t like to call them meetings, but for lack of better word to those meetings or get togethers without that, they have very little interaction.

[00:19:33] With people. My interaction is I’m going to say 98% is done via video calls, zoom calls. I have very little interaction. Face to face at this point because of COVID because my immune system is not great. So I’m extra cautious. I also know that I already live with a terminal illness. So as things get worse with the pandemic, it is very likely that I would drop down the ladder in the queue of who gets treated in when, and that’s a reality.

[00:20:12] That’s a very sad, but true reality. And maybe it can be expected and it’s okay with me. It just means that if I don’t want to end up in that queue, I have to take extra precautions. And some people don’t understand that I’ve been accused of being too cautious, but I’m being accused of that by people who don’t live with an illness like I do.

[00:20:38] So it has changed things for those of us living with it in a variety of ways.

Hanh Brown: [00:20:45] You kind of have to consider the source. Who’s giving you advice, right? Ultimately it’s your life, your choices and your health. So good for you for taking ownership of decisions that you make and not be influenced by the folks that don’t have dementia.

[00:20:58] That’s not walk walking your journey. So that’s awesome.

Christine Thelker: [00:21:02] I believe it’s one thing that the pandemic is showing us is that we all have a responsibility for our own wellbeing and for looking after ourselves and those around us, there’s lessons here. And it doesn’t all have to be bad. There’s some real tragedy out there happening with COVID and.

[00:21:24] We do know that the number of, and they’re just really starting to look in and break the numbers down. And I’m fortunate working with research groups. I get a lot about that information firsthand, of course. So they’re really looking now at the numbers of the mortality rate of people with dementia. And COVID and the numbers are staggering.

[00:21:48] Why is there such a higher percentage of people with dementia? We have to take responsibility.

Hanh Brown: [00:21:55] So well, let’s talk about something. I know that many of us are having trouble with nowadays, which is staying positive to what techniques do you use to stay positive in your own life? Despite of all the adversity that you face.

Christine Thelker: [00:22:10] I try to keep it in perspective. I think back to the days, um, my mother being a young girl during the war, living in Germany, and as I grew up listening to her stories about bombs dropping on their house and then fleeing for their life and scrounging for food. And then they lived through the depression and fleeing to England and then to Canada.

[00:22:36] And starting where she didn’t speak the language and she didn’t know anyone and wow. And I’m complaining because I have to wear a mask and stay home. So I bring it back into perspective that way. And then I go, okay, I can do this. And my mother could do all that. I can do this. And I also just every day, I think, okay.

[00:23:00] I can still go for a walk with my dog. I can put a mask on, I can go for a walk. I don’t have to be around people to do that. I can get in my car and go for a drive all by myself so I can still do a lot of things. And I try to. I’m trying to teach myself to make some pillows right now. So I try to find different little projects that I can do around my home so that I stay busy and I put a lot of effort into.

[00:23:31] Staying connected. So for me, I think it goes to staying connected. Use your video chats, use your messenger call zoom. There’s so many platforms. Now there’s the team platforms through Microsoft. There’s all kinds of ways to connect with people so you can see their faces and still stay connected that way without having to be in the same space.

[00:23:58] And that’s really important to do that. And. Forward and don’t look forward going, Oh my God is when is this going to end look forward to when this is over? Here’s my list. Make a new bucket of just because of my illness. I don’t generally plan very far ahead. In fact, I don’t plan ahead at all anymore, but during this pandemic, I am planning ahead.

[00:24:28] I am giving myself that, where would I like to go? So geez, I can lose myself for hours researching on a city or a town, or taking a map out and planning a road trip and going, well, this little town someplace I’ve always wanted to explore. I’d love to go here, do some research and find out about the little place what’s there.

[00:24:51] What could you do? Those are all positive things that we can. Provide ourselves.

Hanh Brown: [00:24:58] Yeah, no, that’s great. That’s great. I want to comment that you said you want to stay busy, but I actually think you’re being more than busy. You’re very purposeful. You’re contributing you spearhead in so many Alzheimer’s or dementia efforts.

[00:25:11] So you’re a great example and you’re much more than busy. So thank you for being that example.

Christine Thelker: [00:25:18] Oh, thank you for saying that. I always say to people we all need hope. And we all need purpose. Um, purpose after I was diagnosed, I had no purpose through dementia Alliance international. I found new purpose. So my life purpose changed.

[00:25:37] We all live with this life plan and we map out what our life is going to look like, but we never set into place what’s going to happen when the curve ball hits. Are we able to take that hit and reinvent who and what we are? And I found it through this. Yes we can. And in some ways, My life is so rich now.

[00:26:05] So rich through all of this and that’s because I have purpose and I have hope those are two really important things. Absolutely.

Hanh Brown: [00:26:15] So I want to ask you, what would you say to any of the listeners who may be dealing with a recent loved one being diagnosed with memory disorder or maybe even one who. Was recently diagnosed themselves.

[00:26:30] So what would you say to them?

Christine Thelker: [00:26:32] I would say get connected. Don’t sit back and think it’s over. Reach out to organizations like dementia Alliance international. I think Alzheimer’s associations have great caregiving groups. Absolutely fabulous. What they do for caregivers. So get involved with them, find that new hope and purpose your life is going to be different.

[00:26:59] There is no doubt your life is going to be different, but it has not have to be over. It is true that the trajectory. Um, the illness is different for everyone. And they also know now that there’s many things we can do to help ourselves. They now know that nutrition, diet, and exercise are such a big component and nutrition is huge for your cognitive abilities and slowing things down.

[00:27:32] So don’t just settle that there’s nothing because that’s the first thing you’ll be told is. We have nothing for you. I’m sorry. There’s nothing. We can do. Go home. Get your affairs in order. Guess what? We should all have our affairs in order. Anyways, first off, that’s my big message to everybody. Get your affairs in order.

[00:27:55] Secondly. There is things you can do. So don’t let them take away your ability to thrive.

Hanh Brown: [00:28:04] Thank you so much. You’ve just inspired me and just opened up my mind so much, and I really admire what you’re doing. Purpose and thriving, and just mostly contributing to so many folks who are in need of this. So thank you so much.

Christine Thelker: [00:28:21] Thank you for having me everything we can do to help each other. Is such a gift. So you’re a gift to us because you help us all have a voice. So thank you for your gift.

Hanh Brown: [00:28:32] Thank you. Thank you so much. I really appreciate our time to talk. And I’m so glad that we got in touch through social media. My goodness.

[00:28:41] It’s a great platform at times. It might be a lot of noise, a lot of clutter, but I would say very positive most of the time. And this is one of them. This is an example of something.

Christine Thelker: [00:28:51] I agree. I think people think that social media does so much harm, but if we use it in the right ways, It has so much good.

[00:29:01] We can do in this world with it. We just have to choose. To put our focus on the good.

Hanh Brown: [00:29:07] yes.

Christine Thelker: [00:29:08] Good use of it and stop the clutter. That’s how the clutter stops.

Hanh Brown: [00:29:12] Yes. Thank you. Thank you so much again.

Christine Thelker: [00:29:15] Okay. Take care.

Hanh Brown: [00:29:17] Thank you so much.

Christine’s LinkedIn Profile: https://www.linkedin.com/in/christine-thelker-a6183289/