You are currently viewing Living with Dementia: Finding Purpose and Hope with Christine Thelker

Living with Dementia: Finding Purpose and Hope with Christine Thelker

Episode #47 & 79 (Repost)September 28, 2021

Chrissy Thelker was 55 years old when she had her first stroke and was subsequently diagnosed with Vascular Dementia.

With more and more people living with dementia, it’s imperative that we gain perspective and understanding of the lived experience of people living with dementia and the importance of advocacy, peer support, and building a purpose-filled life living with dementia.

Today’s guest shows us how.

Here’s a sneak peek at what you’ll learn from my interview with Chrissy Thelker:

  • [07:21] Chrissy shares the painful experience of losing her husband to cancer when she was 47 years old, and just 2 weeks after he was diagnosed.
  • [12:38] Chrissy recalls the moment she had a stroke at work and describes feeling her body “sliding down the wall”– it was after this that she was diagnosed with Vascular Dementia at the age of 55.
  • [21:26] A lot has changed since Chrissy had been diagnosed and living with dementia. She describes a combination of freedom and of loss. And, there has been a toll on her relationships.
  • [26:05] Dementia Alliance International (DAI) is an organization run by people living with dementia in 49 countries. Chrissy says DAI provided a sense of belonging and explained that it changed her life. Learn more here.
  • [30:38] When Chrissy was diagnosed with dementia, she was given the message to “get your affairs in order” but was not offered much support beyond that. Chrissy reveals what it was like to be given the diagnosis of dementia and the hopelessness and loneliness that she felt afterward.
  • [35:55] A purpose-filled life is Chrissy’s focus now. Learn where Chrissy finds meaning and hope.
  • [46:40] Chrissy shares her recommendations for people newly diagnosed with dementia
  • [51:49] Chrissy shares her recommendations for family members caring for a person with dementia. Here’s a hint: “Don’t disable, enable.”

In this clip, Chrissy shares how life is different since being diagnosed with dementia and talks about the organization that she says, “saved my life”.

About Chrissy Thelker

Christine Thelker from Vernon British Columbia Canada. describers herself as bright, fun and adventurous. Who at 61says, her sense of humor has grown, since her diagnosis. Widowed at 47 and then diagnosed with Vascular Dementia and Cerebrovascular Disease at 56.

Christine worked for Interior Health Authority for 13 years in various sites, Most loved work was in Dementia Care and End of Life Care. It was here that she felt she did her best work.

Advocating for families and Patients, advocating for better training for workers working in Dementia Care, and although she says things still have not changed, she is hopeful with more people using their voices the changes will happen. She knows first hand how peoples abilities are stripped instead of embraced and advocating is the only way to make change happen. She also advocated for better working environments for the workers.

Christine Designed and taught a program to nursing students at the local Colleges on end of life care and dementia care, and designed program on Unattended Sorrow, which was in relation to all the deaths workers saw and the cumulative effects, Christine believes it has many similar effects on people diagnosed with Dementia, and would like to do more work around that. Christine currently writes a blog “ Chrissy’s Journey, Walking the Nueron Forest.. called Dementia”. A lack of resources and support sent Christine in search of help and in her search found Dementia Alliance International, it was life changing and life saving for her

Christine is still advocating, using her voice to try to help others. She looks for places and venues to do public speaking about living with Dementia to try to end the stigma around the illness. In July 2018 presented at the Alzheimer’s Disease International Conference in Chicago. IN June of 0f 2019 she spoke at the Convention of State Parties on the Rights of Persons with Disabilities at the United Nations in New York. Christine loves working with the Dementia Alliance International, and believes whole heartedly that is what helps keep her living well with her Dementia., she also continues to work with a variety of Research groups, both Nationally and Globally.

Christine believes that having being diagnosed with Dementia has given her the ability to truly enjoy and appreciate life in the simplest form, and dislikes hearing that people with dementia are suffering, when in fact many are living well with Dementia.

Her Motto since being diagnosed is “I’m not done yet&rdquo

Connect with Chrissy Thelker</strong

Christine Thelker 0:00
When you're given your diagnosis, they just sit you down and say, well, we're sorry to tell you about you have vascular dementia? And and you say to them, Well, what does that mean? I already knew what that meant. But you still asked the question, sort of expecting a different answer for yourself. I don't know why, but you just sort of do. And they say, Well, you know, the lifespan is three to eight years. And so the best thing now is that you have to get your affairs in order. And, you know, you need to bring all those back. So we know they're in order. And then you have to, you know, we have to put a plan in place for going forward. And, you know, you have to think about it, you know, when the time comes for, for assisted living, or for care homes, and, and you're thinking, Wait a minute, wait a minute. If so, and again, you go through just like you do when you when someone dies, you go through that whole numb period where you're walking around in a complete day, Dave, you're thinking, How can this be. And there's no support given. You know, if any other illness, you get assigned social workers, you get assigned all different types of therapists, you get counseling, you get all kinds of things offered with dementia, you're told to go home and get your affairs in order. So there I went, the following week to my lawyer to make sure all my eyes were dotted and my T's were crossed, and my health care directives were done. And my DNR were signed, and everything's in place, March it back to the doctors. And then you just go home. Nobody helps you. Nobody tells you what you're supposed to do now. So you're just supposed to sit at home and wait to die. And and at some point, that piece of me that little fighter that's always been there, surfaced, and I just thought, that's not good enough for me.

Dr. Regina Koepp 2:33
I'm Dr. Regina Koepp. I'm a board certified clinical psychologist and I specialize with older adults and families. I created the Psychology of Aging podcast to answer some of the most common questions I get about aging, questions about mental health and wellness, changes in the brain like with dementia, relationships, and sex, caregiving, and even end of life. Like I say in my therapy groups, no topic is off topic. We just have to have a healthy way of talking about it. So if you're an older adult, or caring for one, you're in the right place.Let's get started.

Dr. Regina Koepp 3:17
Today we have a very special guest, Christine Thelker, though we'll call her Chrissy, because that's what she likes to be called, is a 61 year old woman who has been living with dementia since the age of 55. And today's interview, Chrissy will share with us her experience of having a stroke while she was working and eldercare. She describes feeling herself sliding down the wall when she had a stroke and her subsequent diagnosis with dementia and what life has been like for her since being diagnosed with dementia. Chrissy is giving us a gift by sharing her journey living with dementia by talking about how she found purpose after her diagnosis of dementia, and what she's doing now to share her purpose with others. Chrissy is author of the book for this I am grateful living with dementia. And today she shares her journey with us, Christy Thelker, thank you so much for coming on to the psychology of aging podcast to share about who you are and what you do. And it's very important message that you have for all of us about living with dementia. And I'm just delighted that you're here. Thank you for being here.

Christine Thelker 4:45
Oh, Regina, thank you so much for having me. And thank you for doing this important podcast or for people. You know, sharing our stories and helping each other go So far in helping us all stay well. So thank you. I'm delighted to be here.

Dr. Regina Koepp 5:08
Can you share with us your story. Like who you are and where you come from?

Christine Thelker 5:15
I always say, Well, I'm just a little Canadian country girl. I live in British Columbia, Canada, I am 61. Now I'm going to be 62 shortly. I was. I worked in health care, actually, I worked in dementia care of all things. That's ironic. That was my career here in Canada. So I have a passion for all things dementia. And at 55, I had a stroke while I was working. I had been having some issues prior to, but they were never quite sure what it was, you know, my went through testing for all kinds of things, FMS, epilepsy, all kinds of variety of things. And it wasn't till after that, that they were able to determine that I actually had vascular dementia. And, and that changed everything. changed everything. You know, so I've just, I've always just been, you know, just like everyone else, just, you know, a regular down to earth person who worked and, you know, live life, like most do. Until then...

Dr. Regina Koepp 7:01
Until you had the stroke, and then was diagnosed with and were diagnosed with vascular dementia.

Christine Thelker 7:07

Dr. Regina Koepp 7:10
Another part of your story, which you talk about in your book, is that you also became a widow, very young, or younger than most?

Christine Thelker 7:21
Yes, I was widowed at 47. My husband was 53. And it was unexpected and very quickly, you know, we had he died of cancer, we had a two week window from diagnosis till death.So that was a life changing and life altering. To say the least. that's a that's a journey, in and of itself for most people. And it doesn't matter whether you've been married for five minutes or 50 years. That loss is, is something that needs to be honored. And I think that's something that we all, especially on I shouldn't say especially because it doesn't matter how old you are, but you we tend to try to tell people and pull people out of that sort of grief stage, to get on with things. You know, they need to get back to work, they need to get doing this they need to get no, they need to be able to sit with it, and feel it and move through it at whatever pace is good for them. Sometimes we rush those things, which is not good for our overall health. So that's something sort of along with the dementia that I am really keen on advocating about. And it's really important to me that for people with dementia that people remember that they still have the right to to move through grief. People are often not even told when a spouse dies or a one of their children, God forbid dies because they're in a senior's element while they have dementia. So we just won't tell them because they know there is a sense of Unknowing within us. We know when something is not right when something is missing and to not have those things acknowledged is really damaging whether you have dementia or not. So yeah, so that that changed life for me.

Dr. Regina Koepp 10:14
Yes. You were working in dementia care?

Christine Thelker 10:20

Dr. Regina Koepp 10:21
And elder care and dementia care. And then and were you working in that system when you lost your husband?

Christine Thelker 10:29
Yes, I was. So yeah, I took the two weeks off. And a bit of time afterwards. I stayed at the hospital with him, I never left the hospital for those two weeks. And that became my room, our room. And I think when I look back, that really, I grew from that, and I gained an inner strength from going through that. Yeah. And I had end of life care, it always been really, really important to me. But it just took it to a whole other level. And when I did go back to work, I took that with me. Mm hmm. So I really worked hard to make some positive changes for how people's end of life in those care homes, what's happening

Dr. Regina Koepp 11:44
From your own personal knowing from personal experience, and then the resilience of going through it and moving through it.

Christine Thelker 11:53
And moving through it. Yeah, yeah. Yeah.

Dr. Regina Koepp 12:01
So 47 years old, your husband passes away, you move through it, maybe maybe, at times still are because it might not ever leave you. And, and you're working in, in senior care and with folks with dementia, and you have a stroke, you have some some medical problems, you try to figure out what's going on nothing. Nothing lands, no diagnosis lands, you have a stroke at work, which must have been so scary. And you write about this in your book. But will you talk about that? What was that like?

Christine Thelker 12:38
Well, you know, you sort of you convinced yourself that? Well, no, it's not really anything, right. But then suddenly, you realize, I'm in trouble here, you know, and I remember sliding down the wall, thinking I need help, right. And then, you know, the whole the whole piece of, you know, people looking at you and I couldn't really respond, and I couldn't make sense of what was happening. And, and then being in the, in the hospital, and you know, the doctors and the tests and everything happening and, and you lose all your sense of time. And then when they tell you that you've had a stroke, and you know, then they start the referrals to the specialists of the stroke clinic, and all of those things that are going to happen. And then they start trying to unravel the whys. You really start to realize that you have to sort of, it's almost like you're number a while just like when you lose someone, you go into this. This where you're operating at some level, but you're sort of not Yeah, and and it's very hard to explain to people but you're going through the motions of doing what you have to do. Over over through that period, I ended up my house had to be sold my job disappeared because oh, you can't go back to work and all these things started happening. And it was like I was sitting on the outside watching my whole life unfold and I could do nothing about it. So you know, we all have this need to control our environment. All of a sudden, you it's ongoing, so you don't have and, and you learn through that though that it's okay. Not to have control. It's okay to just let things happen as they're meant to and as they need to. But it's terrifying in that in those moments, it's absolutely terrifying.

Christine Thelker 15:15
And then you have to put all of that trust into people around you, and hope that they're helping you make decisions that are the best for you. And so often people don't have those conversations with people. So and that really is, is unfair, not only to yourself, but to the people around you. You know, those kinds of conversations are so important, because then people are left trying to make those kinds of decisions. You know, like, people were trying to help me to know that, you know, I really did need to sell my house, I wouldn't be able to do all the upkeep and the work and all of these things anymore. And I, I needed to be able to trust that they were looking beyond what, you know, just right, today, what was going to be in my best interest. And if we don't have those conversations with people, it makes it really hard for them to do that. And we don't want people doing that. And then they walk away having to feel guilty, or they, and sometimes that's self inflicted on their part. But it's still there. So having those kinds of conversations around, those things are really important. Who were your people then a group of friends, a group of friends. So, you know, I of course, I didn't have my husband to help make those decisions. So I one of my really, dear, dear friends came from another community, we've been friends for years. And she came I had a niece who came and, and helped. Once we had sorted through my stuff, she came and had a sale of things. And I had another really good friend who was in real estate. And he came and he took care of all the stuff to sell my house and you know,

Christine Thelker 17:33
I don't remember a lot of it. Yeah. I just know that they really pulled together to, to do the best they could for me.

Dr. Regina Koepp 17:46
And you trusted them.

Christine Thelker 17:48
And I trusted them. And it was it was another huge loss for me. You know, I had to go through a whole other type of mourning now because I was just sort of getting on my feet, I would say after my husband died sort of feeling grounded again, if you will. And then all of this happened, and everything got pulled out from under me again. So and now I've lost the career. I'm selling my house, I have no idea. And you know, doctors are talking about am I gonna have to look at care, you know, all these different things. So, so you have to go through a whole other level and type of mourning, right? Yes, absolutely. Yeah. Yeah, compounded loss, compounded loss, I always call it that accumulated of loss. And I actually built a program at one time in my working career called unattended sorrow. for workers who worked especially specifically in long term care, and they, they dealt with and held hands in so many deaths every year. And one time, you know, we always had three or four days before somebody else came into that room sometimes a week and, and so you had time to sort of process that this person who you had now had a relationship with is going and because you do build relationships with those people with their families, and then it became where you know, it's a 24 hour turnover to when someone passes away in someone else's in that room. And so what happens to those workers with all that, when I call on attended Sorrell, there's no time to process it has to build so though is that then what turns out, manifesting into strokes, heart disease, all of these different illnesses as, as those workers age, and as that accumulative effect takes hold. So yeah, it's it's, but for me that was, that was the whole new set, set back. And I really had to, once again, restart my life. Yeah, find your footing, find my footing, you know, I always say when my husband passed away, I wasn't the same person after as I was before, when I had my stroke and got my dementia diagnosis, I wasn't the same as I was before. You can't injure those kinds of hits. without them having an impact, doesn't mean it has to be negative. But they're there. And they definitely change our outlook, they change our perceptions, and they change our relationships with people around us. So that's a really big component in all of it. Yes.

Dr. Regina Koepp 21:26
How would you say your life is different, or you are different now with a dementia diagnosis and living with dementia?

Christine Thelker 21:36
Ah, in some ways, I'm freer, if you will, I, cuz I don't worry now about tomorrow. I don't worry about you know, we spend so much of our life worrying about our career, and worrying about next week and next year, and five years from now we're all busy building these plans. And we're forgetting to live today. I have learned to live today, in this moment, I can be fully here with you and join this conversation. Because my mind isn't thinking about what's happening after this. Only about right now. So that's been a really nice, nice bit to get out of this. I also am more withdrawn in some ways, just by the nature of my dementia in other ways. Morrow, Morrow going and more vocal. And so I advocated through work and stuff, but I never really pushed that envelope, I never really sort of was brave enough to really put myself out there fully. I no longer worry about that. So those things have changed for me, I'm I'm much more willing to stand up and speak my truth, instead of worrying about what people might think or what people might, how people might respond, you know, like, I, I say what I feel needs to be said, and I always feel like I'm speaking my truth and and in some ways, I'm I may be happier and more content. Because I don't have the constraints that society puts on us. If you want to look at it that way, those constraints are gone.

Dr. Regina Koepp 23:56
How has it changed your relationships?

Christine Thelker 24:00
There's been a loss of relationships. Sometimes I think some of the losses are because they have trouble accepting you as you are now. You know, they're, they're sort of suffering their own loss because you you aren't who you were before. And they they have trouble with that transition. So those relationships fade. You know, and I don't like to place blame. I hear sometimes Well, people just walk away from people with dementia. Maybe it's maybe they're, maybe they're sort of running from their own inner strife trying to, to deal with that with their own loss of who you are. And, and maybe it's fear and maybe it's all kinds of things and so I don't like to I don't like to say, Well, you know, people shouldn't know people shouldn't do that they should, they should face those things, and they should talk about those things. But we all know that not everybody has that ability. Yeah, so we sort of, I have just come to really live by that, you know, a reason a season or a lifetime. And as much as I have had, the losses of friendships and associations, I have also gained illus friendships and fabulous connections. And I share a lot of laughter now, even more so than, than previously. You know, that is one thing I love about my mentor family, I call them we love a lot.

Dr. Regina Koepp 26:01
Tell us about your dementia family.

Christine Thelker 26:05
Dementia Alliance international is the organization that I actually credit with, I always say they saved my life. They were the ones that showed me that life wasn't over with your dementia diagnosis, that you can still live and have a life where you have purpose, where you have worth, where you can have friendship, and you can have relationships with people that are healthy and, and where you can encourage people to thrive. So that for me, you know, they, I have met so many amazing people. And I have been had the privilege of, of working alongside of those people to really try to help make positive changes. And that's a very powerful thing. So when you go from getting that diagnosis and feeling like life is over, and then somebody says, Wait a minute, it doesn't have to be come take our hand and join us. And you know, the first time you go go on screen with them on a zoom. And they talk to you and you cry, and you laugh. And if you're looking at these people, and they're just like you, you know, and it's so liberating, because for so long people, you know, stay and portray Well, you shouldn't tell people and you shouldn't. Yes, we should. Yes, we should. And once and, and you know, it's like we all want to have our little sign of marched down the street together. So they're very empowering, very empowering. And I, I I love them dearly. And and everyone associated with them. So I've been blessed by them for sure.

Dr. Regina Koepp 28:16
Your dementia family.

Christine Thelker 28:17
My dementia family. Yeah. And they are they they have become my family. Yeah. You know,

Dr. Regina Koepp 28:25
And these are other people living with the dementia diagnosis. And the people who you're talking about on the zoom calls, do you have to have a diagnosis of dementia to attend those kinds of codes? Yeah,

Christine Thelker 28:36
So dementia Alliance international is actually in 49 countries, which is amazing in itself. It's fully run by people living with dementia. Another amazing feat for all that people think we aren't capable of. We run a virtual organization in 49 countries. We deal with multiple time zones and languages. And we are a busy organization in Israel. We work with the World Health Organization, and with the United Nations and with many other organizations, globally, and doing some really important work. So yeah, that and when you meet the people within the organization, you you know, you become part of a very special family.

Dr. Regina Koepp 29:39
Yeah, you belong here. You belong with us.

Christine Thelker 29:41
Yeah, you belong with us. No judgment. And that's the other thing because it's peer to peer. There's no judgment. If Today I show up at the meeting and I'm in my pajamas and my hair is a mess. Everybody will just know that I'm having one of those days, and not ever bad and I never judge nothing. You know, so that peer to peer is something that is so very important. And that's a piece that nobody else offers, nobody else can offer. Because

Dr. Regina Koepp 30:26
peer to peer is is a really unique is a really unique type of support. You had this impression that dementia diagnosis meant your life was over. How did you get that message?

Christine Thelker 30:38
Well, because when you're when you're given your diagnosis, they just sit you down and say, well, we're sorry to tell you about you have vascular dementia. And and you say to them, Well, what does that mean? I already knew what that meant. But you still asked the question, sort of expecting a different answer for yourself. I don't know why, but you just sort of do. And they say, Well, you know, the lifespan is three to eight years. And so the best thing now is that you have to get your affairs in order. And, you know, you need to bring all those back. So we know they're in order. And then you have to, you know, we have to put a plan in place for going forward. And, you know, you have to think about the you know, when the time comes for, for assisted living or for care homes, and and you're thinking, Wait a minute, wait a minute. If so, and and again, you go through just like you do when when someone dies, you go through that whole numb period where you're walking around in a complete daze, you're thinking, How can this be. And there's no support given. You know, if any other illness, you get assigned social workers, you get assigned all different types of therapists, you get counseling, you get all kinds of things offered with dementia, you're told to go home and get your affairs in order. So they're I went the following week to my lawyer to make sure all my eyes were dotted, and my T's were crossed, and my health care directives were done. And my DNR were signed, and everything's in place, March it back to the doctors. And then you just go home. Nobody helps you. Nobody tells you what you're supposed to do now. So you're just supposed to sit at home and wait to die. Right. Right. And, and at some point, that piece of me that little fighter that's always been there, surfaced, and I just thought, that's not good enough for me. That's not good enough. And so I started researching myself. I thought, if I'm going to have to sit here and just die, I'm going to have to figure out a way to do it, because this isn't working. I can't just life can't be just over. You know, even when people have other terminal illnesses, that they're, they're given a timeframe. You know, the whole world around them erupts to make sure that their bucket list is is done. And what do you want to do? And let's help you do that. When you get dementia, everybody just sort of fades away. And oh my god, she has dimension. That's it. There's nothing so that's, that's a real there's a real difference there in the whole mentality around dementia. And the out casting and the out casting. And, and the lack of resources. Yes. You know, the lack of resources. And, you know, I, I thought would my husband was diagnosed, but if they threw every resource at us possible, you know, and yet when I was diagnose- nothing.

Dr. Regina Koepp 34:30
Get your affairs in order.

Christine Thelker 34:32
Get your affairs in order. So through that research that's been done, I found my dementia family at dementia Alliance International.

Dr. Regina Koepp 34:40
How long did that take during the period from your diagnosis until you found them.

Christine Thelker 34:48
A year, maybe. But once I found them It didn't take very long For me to start standing up and saying, Yes, I may have a terminal illness. But I have this life until the end that I fully want to live. Yeah. And so I started embracing that.

Dr. Regina Koepp 35:18
Yeah. And they supported you. Your dementia family supported you in that.

Christine Thelker 35:22
And they supported me. You know, not everybody thought, Well, what, you know, I had people Oh, why would you do that? Why would you? Well, why would I just sit at home on the couch?

Dr. Regina Koepp 35:35
That's the better question. Why wouldn't I?

Christine Thelker 35:38
If you were told you only had a certain period of time to live? What would you do? And I don't know very many people that would say, well, I'll just go home and sit on the couch. You know,

Dr. Regina Koepp 35:55
Tell us now about your purpose-filled life living with dementia. So what brings you purpose, and a sense of meaning and joy now?

Christine Thelker 36:06
My advocacy work really brings me a lot of purpose. And it, in turn, just fills me with so much hope. You know, when we all need that, those are two things we all need to have in our lives, is purpose and hope. And that's one thing that advocating and trying to help others has become vital to my well being. Those two things, I think, are, are the most important pieces for me.

Dr. Regina Koepp 36:46
Can you give us an example of your advocacy.

Christine Thelker 36:53
I spoke in Chicago at the Alzheimer's Disease International conference as one of their opening speakers. And that, for me, really opened up a whole new world of and I met so many people, and the same old stories and and over and over again, you get you hear from people how they were just told to go home and get ready to die. And you think, no, we have to change this, we have to change this. So starting to use my voice in that regard. And speaking at the United Nations in New York, on the human rights side of living with dementia, and now working with many different researchers and organizations to bring voice to get the changes made in the education, have the professional academic world take on a different view of what it looks like to live with and have dementia. You know, to have have doctors that will actually say to you, I'm learning from you more than I'm able to help you and and have them be open to learning. And those things are, are are what I do. They're there. They're what keeps me going every day is an every time you see just one small change, like I had. Last week, I had a meeting with my doctor. And he said to me, I want to show you a letter I've just sent to your long term disability people. He said, because I really believe that, you know, this should they should have been doing this all along. But they haven't been and I'm going to really fight for it for you now. And that is that you they need to have somebody in charge and have a team of rehabilitation people in place for you. Why don't we have access to provide that for you? So that's what we need. We need more of that. So writing my book was another big piece. You know, that was I was told by a number of people that I probably shouldn't do it. You know that? You know, I'm leaving myself very, very open. You know, once it's out there, you can't take it back. Right and you make yourself really vulnerable. And that's true, you do but I said if I can just make the difference from one person, then it will be worth it. You know. And I went to another town four or five hours from here and I met with people who didn't have resources where they were. So and it was because of my writing that I had the opportunity to meet with them, and share with them. And I had a lady come to a book signing and her and her husband and said, I thought I was the only one that was young. And it opened up a whole new world for them. And they just, you know, Christmas, I got a lovely thing from them. And a thank you, they always say you saved our lives. And it's like, oh, you're saving mine at the same time? Yeah. So all of those things are the things that, you know, keep me well, and they're the important. They're the important pieces of my life now. Yes.

Dr. Regina Koepp 41:04
Your book? Can we talk about it for a minute? Sure. So it's "For This I Am Grateful: Living with Dementia" by Christine Felker.

Christine Thelker 41:13
Right, yeah,

Dr. Regina Koepp 41:14
it came out in 2020.

Christine Thelker 41:16

Dr. Regina Koepp 41:17

Christine Thelker 41:18
Thank you.

Dr. Regina Koepp 41:19
During the pandemic,

Christine Thelker 41:22
During the pandemic, yes, of all things.

Dr. Regina Koepp 41:26
And, you know, even Chrissy, the way that you write the book is incredibly vulnerable, because just for folks who haven't read it, and I recommend that people go and read it. It's your diary, essentially, of living in the fog, of emerging and everything in between. It's the the journey of living with dementia from diagnosis to today to living a purpose-filled life. It's so poignant. And important.

Christine Thelker 42:03
Thank you. And one of the things that I always forget to tell people about and people have asked me that is the cover of my book,

Dr. Regina Koepp 42:13
Tell us

Christine Thelker 42:14
And that cover of the book, I did that artwork, that's my, my painting. And I did that, and one of the darker moments of my diagnosis, you know, I was sitting at home and I never painted in, in my life until that period. And then I was just painting every day. And one day, I painted the picture. Because I was just feeling so heartbroken. Yeah, just shattered. And, you know, now, maybe book two will be that hurdle put back together.

Dr. Regina Koepp 43:01
Wwe have to describe this for people who are listening and not seeing this? Will you describe the image?

Christine Thelker 43:08
So the image shows an eye with a teardrop. And then it shows a heart shattered. And then, of course, the title of the book. And, and, and it truly, it truly does go to, to that point where I was struggling, you know, I was struggling, and I didn't want to sit at home and die. And I felt like I was sitting at home and dying. And nobody was helping me find my way out of the dark. And those those are so so that's, that's how the book cover came to be. And then, of course, the title of the book speaks to I'm grateful for all of that for the dark, that brought me to light before my world being turned upside down and shattered. And finding that new hope and that new purpose and becoming who I am today. I like who I am today. You know, I make a lot of mistakes in a day. I don't do a lot of things the way I used to do them. I don't manage things as well as I used to. But through all my fumbling through my days, I find things for laughter. I find joy in every day. And I feel very peaceful about it all.

Dr. Regina Koepp 44:54
Remarkable. And now on to book two where the heart will be reconstructed.

Christine Thelker 45:00
Reconstructed. Yes. Let's put the pieces of the heart back together, let's put a twinkle in the eye instead of a tear, right? That goes, that speaks volumes for why we need to change the stigma that surrounds dementia. We don't need people going home, home and hiding. We don't need families hiding their loved ones at home because oh God, we can't take them to a restaurant. What if he says something? What if he does something? Oh, well, what if he does? You know, I do all kinds of things. Oh, well, just like laugh it off and carry on. You know, you know, I've been in a restaurant and, and we're good, you know, like a fancy coffee of some kind. And it's common, I've looked at it. And I said, Well, I wouldn't order that that's not for me. And they're like, that's what you ordered. And I'm like, OK I guess I did like, Oh, well,

Christine Thelker 45:55
It's not the end of the world. You know? So we have to learn to embrace people with dementia with any other type of illness, we have to understand. And as we age, we all have more, more challenges, dealing with our everyday things. And we just need to be more forgiving and more understanding. Kindness goes a long ways, you know, and we have to, we have to start to understand that no matter where a person is on that spectrum, they still have purpose. Yeah. You know, now,

Dr. Regina Koepp 46:40
Since you do so much advocacy now, what recommendations do you have for people when they're newly diagnosed, in instead of or maybe in addition to what needs to be there? So, in addition to getting your affairs in order, how to live a purposeful life from the beginning, what would you suggest?

Christine Thelker 47:01
Well, the first thing I always tell people is go on to dementia alliance international and sign up, it's free. And if, you know, if you're the person with dementia, and you struggle with the technology side, get someone to help get you signed up. And we have many people who who attend our peer to peer support groups have their care person starts the computer for them, sets them up and then walks out of the room and it's great. So that's really key because you will get that support and understanding care partners. There's a lot of support out there for care partners, and they need to take advantage of it. And for people with dementia keep doing everything and anything that you can don't feel like well you shouldn't because you might make a mistake keep I say we reinvent ourselves every day. So you know how I got myself dressed and organized this morning does not look like how that worked yesterday because some other piece just you know was a challenge today. So don't be afraid to just do it in a way that works is doing the same thing it's just doing it differently and and know that you can still find joy you know you can still find joy I am always out in nature going for walks taking pictures doing things that I never had the time before didn't even know that that's you know, something that I really really would get so much out of so for all of those people and get involved get a get involved don't don't listen to that. Go home and die go home and fight you know with every other illness you know, you tell people to fight fight you know you've got this illness but you fight fight fight it. Why aren't we told to fight?

Dr. Regina Koepp 49:36
Yeah, let's slow down on the progress.

Christine Thelker 49:40
Yeah, let's fight it and let's learn. There is so much out there now that shows nutrition exercise. All of those things are huge components, you know, eating high healthy fat, eating a lot of really powerful plant based foods. And doing that in combination, you know, exercise programs, walking programs, all of those things are so vital. You know, and,

Dr. Regina Koepp 50:13
And the social connection is one of the most essential ways for people with dementia to slow down the progress.

Christine Thelker 50:22
Yes, yes, social connection is everything and, and that's why I love my Dementia Alliance family so much, because not only do we have our weekly, different support groups, and we have a cafe live brain where we share and learn more about how to keep our brains healthy. We have we make connections, and we quite often have private zoom calls, you know, where we sit and have coffee together, you know, and chat. And those social connections are our vibe that Yeah, they're very vital. And they're really important. And too often, people become so isolated. And I know the pandemic has created a lot of isolation. I've been in my bubble of one for pretty close to a year now. And but my, my family, my dementia family, doing the video messenger calls and the zoom calls, and we're holding each other up, you know, it's like, well, it's Sunday morning, let's just grab a coffee in our jammies and, and have a visit. And that's what we do. You know, it's still a connection. Yeah, it's still that socialization.

Dr. Regina Koepp 51:49
Now, what recommendations do you have for family members who are embarking or helping their loved one with a new dementia diagnosis?

Christine Thelker 52:00
My biggest words to people are don't disable, enable. And that is something that caregivers, partners, and I don't I don't like the term caregivers, unless that's hired person. Because I don't believe that, if my husband was alive, I don't want him called my care partner, his my husband first, caring for me is part of what you do in a marriage. So to me, I sort of take a bit of issue with that. Because it when you do that, when you all of a sudden today, your Joe's wife, and tomorrow, you're Joe's care partner, it changes the dynamics of the relationship. Yeah, it makes it imbalanced. So don't allow that to happen. remain as the partner remain as the spouse first. Yes, you're caring for the person. But and the second thing is, don't disable them further. So by that, I mean, you often find that people are frustrated, because it's taking you longer to do things, or you don't do things the way you used to do them. So they take over doing them. Yeah, yeah, it doesn't matter if it takes me an hour to make my toast. And that I put the bread in the toaster upside down. Just let me make the toast still. Because every time you stopped me from doing something, or stop me from figuring out a new way to do an old skill, because that's what it is. We constantly are learning how to do a skill we already have in a new way. So help us to do that help to give us the space, the time unless we're going to cause harm to ourselves or you or you know, that's different. But until them walk away, go fold the laundry or do something go for a walk out in the yard or do something else and let me fumble my way through it. Let me ask for help. Don't just assume I need you to take it over. That's my huge message. Yeah.

Dr. Regina Koepp 54:53
Well, Chrissy, Thelker, thank you so much for these words of wisdom.

Christine Thelker 55:00
Thank you for having me. You know, we could just chat Forever,

Dr. Regina Koepp 55:04

Dr. Regina Koepp 55:07
Now tell us where can people learn more about you? You mentioned writing a blog, and and where can they buy your book.

Christine Thelker 55:14
Um, my blog is Chris's My book is available at Barnes and Noble most bookstores, indigo chapters, bookstores, at Amazon, and through the publishers, Austin McCauley in New York. So readily available, readily available. So and always love and welcome, you know, to hear from people once they've read the book, so and love to have people and get to know people through my blog as well. So, yeah,

Dr. Regina Koepp 55:57
Thank you. Well, we'll link to all of these in the show notes. And we'll make it easy for people to reach you.

Christine Thelker 56:04
Yeah, that would be great. You know, I love the feedback. And, and like I say, I've been very privileged to meet a lot of very special people. This is this is the new chapter that has. I've met people I would have never known had it not been for my dementia. So how can it be all bad?

Dr. Regina Koepp 56:31
That fighter spirit in you... that knew it wasn't the end. The diagnosis wasn't the end that You had a lot of life ahead of you.

Christine Thelker 56:42
Yeah. And maybe, maybe I'm grateful that, you know, in, in some way being on my own, made me have to fight. You know, it's so easy for us to sometimes given and let our let our partners take over and just, and then we get into that mindset that makes us deteriorate faster than necessary. So for me, I'm grateful that I have had to fight. And I'll continue to fight, you know,

Dr. Regina Koepp 57:19
with purpose

Christine Thelker 57:20
with purpose. I'll continue to fight with purpose. Yes. Yeah.

Dr. Regina Koepp 57:26
Thank you so much for being here. It's been a real honor and gift really to get to, to learn from you and talk with you. So thank you so much.

Christine Thelker 57:37
Oh, thank you. And thank you for having me and I hope to chat again soon.

Dr. Regina Koepp 57:44
I love that Chrissy has found a sense of belonging with her Dementia Alliance international group. I love that Chrissy is advocating for dementia rights, is advocating for helping other people living with dementia to find a sense of purpose in their lives, and is sharing her journey with us. For Christie, I am grateful. I have linked in the show notes to where you can learn more about Chrissy read her blog or buy her book, and I highly recommend it.

If you are concerned about a loved one with memory loss, download my free memory loss guide. In it I talk about the signs to be mindful of. I talked about the benefits of early diagnosis of dementia and what to do if you're worried that your loved one is showing some of the signs and symptoms of dementia. So head on over to the show notes and download that free memory loss guide now, and just a reminder, I would love for you to join my caring for aging parents community on Facebook, where we support each other in caring for our older loved ones. You guessed it, I'll link to that in the show notes as well. That's all for today. Now it's your turn. All you have to do is subscribe, leave a review and share this episode with others so that they can be part of the conversation too. One last thing, a special thanks to Jhazzmyn Joiner, our psychology of aging podcast intern, for all you do. Lots of love to you and your family. Bye for now.

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