Podcast, Season 1 -

Stephanie Bendixsen – Accepting Dementia

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Stephanie Bendixsen is a presenter, broadcaster and media personality with an extensive background in gaming and technology. She cared for her mum who was diagnosed with dementia and in this frank conversation shares her experiences and regrets about her mum’s end of life.

In this vulnerable interview, Stephanie shares what she wishes she had of known when she was caring for her mum, and how acceptance could’ve better prepared her for her mum’s journey with dementia.

Stephanie has also releaesed a series of children’s books called Pixel Raiders and is an ambassador for Dementia Australia.

Transcript

Ash: Thank you so much for joining us. Can you tell us a bit about your backstory and how you became a dementia advocate?

Stephanie Bendixsen: Yeah. Sure. I lost my mom to dementia in 2018 and it was a disease that she suffered with for… Well, actually, I do not know how long because the diagnosis portion of the illness is really difficult. I think I would say it affected our family for the better part of 10 years, but when I think about it now, it would have been a lot longer than that. My experience with her and her illness spend her living at home with her as my mom to her living with my dad and requiring care it to moving into full-time care in a nursing home to passing away well before she should have. I got to sort of experience all of the horrible lows that come from watching someone you love change so terribly and lose such a meaningful portion of their life well before their time. Yeah, it was a tough experience and I think when you go through something like that, it always makes sense when you see people who are Ambassadors for Charities that represent something they have been personally affected by. But I think having experienced it myself, I understood that a lot more because you are kind of left with all of this helplessness and you do not really know how you can make yourself feel like you can contribute in any kind of meaningful way and I think an organization like Dementia Australia made it easier for me to process what I was feeling and feel like I had some sort of helpful purpose after feeling so helpless for so long.

Ash: Yeah, for sure. I would like to come back to your advocacy in a little bit. But if we could hone in on your mom’s story a bit. You were talking about the period before her diagnosis. That was a challenging one, but you were not really sure what is going on. Can you touch on that a bit?

Stephanie Bendixsen: Sure. My mom, her name is Wendy and she worked in her life as a flight attendant, that is where she met my dad, and also as a nurse. Those were the two main occupations for women in the ’60s. Yeah, she is great at both. She was very focused in the health industry and she was very organized and she was just a really great carer in general. Towards the end of her career, she moved into Aged Care ironically. She was working in retirement villages and would look after people who are elderly. Because she had worked in hospitals she ran on a very tight ship. She was very clean. She was very organized. I had this very particular view of her and who she was and it became very strange when those aspects of her personality started to change. Those were the things that we sort of started to notice early on. Because when you think about Alzheimer’s or Dementia, you think about someone just forgetting things a lot, but those are not necessarily the first symptoms.

Stephanie Bendixsen: I think she just started to become a little bit more withdrawn in the beginning. She lost confidence. She would not do anything without my dad. She stopped wanting to drive places outside of our immediate surrounding suburb. She stopped wanting to drive at night. She kept complaining that she could not see properly at night. She had something called night blindness, I think she said she called it. Yeah, so she just became a lot more withdrawn. Then she started making little mistakes that you could attribute to anyone. I am a massive scatterbrain. I most so forgetful. I had the nickname “Space Cadet” in high school because I am just always in another realm somewhere, and just clueless. She would forget the pin number of her debit card, she would park her car somewhere and forget where she parked it and things like that, stuff that we were just like, “Oh, gosh.” The house that she always kept a very neat and tidy started to become a little bit more chaotic and my dad was working full-time and she was working part-time in Aged Care. She was still kind of trying to manage the home as best she could but was losing the ability to do that.

Stephanie Bendixsen: Things were starting to kind of pile up strangely. She would buy multiple numbers of things. Three cartons of milk or ten avocados or something. It was really strange. Coupled with this is that she was type 1 diabetic so she had to be managing her medication herself as well. She had become really good at that and really only a handful of times throughout. She had diabetes since her sort of early ’40s. There really only a handful of times where she had mismanaged her medication and she had a low blood sugar or high blood sugar event I suppose, but they started to become more frequent as well where she just mismanaged her medication and things like that. I think anytime something like this starts to happen, it is really scary for everyone and there is a general feeling of mass denial that sets in when no one wants to believe the worst. No one wants to even consider the worst. My dad for a long time was really exploring options of it could be anxiety or depression. She was really difficult to talk to about it because she did not want to talk about it. She would start to get really aggressive if you tried to have that conversation with her.

Stephanie Bendixsen: That kind of aggression and defensiveness is obviously when someone is questioning your behaviour or the function of your mind, I suppose, anyone would be defensive. But also I think aggression is a pretty strong symptom of what is going on in your mind when it is sort of deteriorating as a result of dementia. I know that now. Yes, she went to a therapist for a while. We had all kinds of tests, cognitive tests that did some brain scans and stuff but it is really difficult. You cannot always see Dementia or Alzheimer’s in any sort of brain scan. Because she was so nervous and anxious about the prospect of taking these cognitive tests, it was really difficult to determine whether she was not answering them correctly because she had something wrong with her brain or because she was just so anxious about the whole situation. She gets so flustered and she would cry and it was difficult for a doctor to definitively say that something was affecting her one way or another. It kind of went on in that stage four years .

Stephanie Bendixsen: It was not until it started to kind of manifest in her conversation and recollection of things that it became pretty clear to me what was happening. It was like big life event stuff when you have a conversation with someone and you tell them something and they may have forgotten that you had that conversation. It is pretty normal. We all do that sometimes. But as an example, my sister announced that she was pregnant to us all at a family dinner and it was a really lovely celebration and it was a beautiful moment. The next day we were at the shops and my mom found a baby outfit and she said, “This would be so lovely for Karen,” and then she looked at me and she was like “Did you know that she is pregnant?” and I was like, “Yeah, I was there, she told us all together.” and she looked at me for a moment. She was like “Oh, yes, of course, like yeah, of course.” I was like, “Weird.” But then we sort of continued out throughout the day and it was like a Deja Vu. We walked into another shop and she picked up the same similar kind of baby outfit and she goes “this would be amazing for Karen” and then she looked at me and she was like “did you know that she was pregnant” and I was like, “yes,” and it was in those moments that I started to get a real– my heart was racing because I was like, “This is not normal and I know what this is.” When they when I tried to bring that up with my dad, he was very unwilling to accept any possibility that is what it could be. Even for a long time after that, those kinds of instances started to happen more and more and my dad was still very much like, “This is a problem that we can solve.” It was really tough.

Ash: Yeah, absolutely. I was thinking that one of the challenging things for your dad must be, as you were saying before, seeing this person that he knows changes in front of his eyes and these things which he has taken to be kind of [inaudible]s of her personality, her organization and her has switched on, she is with everything to have that slip away. It must have been really hard for him to confront that.

Stephanie Bendixsen: It really was and I think, there is so much that comes with it because they both worked and he was not quite ready to retire yet. But he had this sort of vision for what retirement would be with her and he could not really stop working yet because he was not financially able to and was now kind of starting to realize that the picture that he had for his sort of retirement plan was going to be quite different. In the early stages of her dementia before we could really sort of definitively say it was what it was, it is really difficult not to just get profoundly frustrated with the person. Because not only is she forgetting things that seem obvious, the rest of her personality is still there. She still seems to function and talk to you like a normal person. When she forgets major things or repeats herself or says things that are just untrue because they are not making sense in her mind and in the right way anymore. Then we will really get aggressively defended. Then you try to correct her and then she will get really angry at you. You end up in these fights all the time. Now, if I could go back I would have much earlier moved to a place of acceptance in the fact that she is not able to recall things normally anymore and it is not worth having the argument about it. But because you are always hoping that if you correct her then she will understand, that it is not actually as bad as it is and that she will be able to be like “actually, no, you are right. I remember that. This is where we went on that holiday and it was fine. There is nothing wrong with me. That is kind of I think where you are always pushing for.” But memories and ideas and thoughts are actually not able to organize themselves in her mind in the right way anymore. She starts to kind of really persist with just all of these things that just are not true and it is really hard to just sit and listen to it and know that it is not true and not correct it and not get into a fight about it. Yeah.

Ash: Absolutely. Can we flash forward a bit to a diagnosis and what changed after the diagnosis?

Stephanie Bendixsen: I think she had some awareness that something was wrong with her by that point. She still did not really want to talk about it, but she would have really sort of mercurial emotional reactions to things. She could be really happy and then she would just spontaneously just cry a lot. Then it was around the time of her diagnosis that we started to notice more cognitive issues. This is not something like manifesting physically. That was not something that I was aware of with dementia. I thought Alzheimer’s was something that made you forget slowly, you just forget until you did not know who anyone was, that is my understanding of it, but I did not realize that it attacks your brain to the point where you cannot actually measure distance properly, that contrast in light and shade is really difficult, certain colours become indistinguishable. She started to kind of fall over a lot. She would choke on her food a lot. She was unable to kind of chew as normally. She would bump into things. She struggled to kind of find where the chair was. She struggled to lower herself into a chair properly. Things like that.

Stephanie Bendixsen: It was around this time as well that she started to fall into a speech pattern that was very much… It was like she had an increasingly limited vocabulary where she understood the right sort of response for a conversation. But she could not really expand on any kind of topic. She lost the ability to converse in any normal human way. She just would react the way that she thought was appropriate. Occasionally she would just fabricate a memory. I think to feel like she could contribute because she could not normally. She could not have an opinion on things. She lost the ability to have a kind of independent thought about something. It was just you have said something that it is either sad or happy and I know the right response to that. I mean, they say dementia is the sort of the pathways to your synapse, it was a sort of breaking down and it was like she was slowly losing access to all the things that allow you to communicate effectively. I also noticed with her that she had periods of deterioration that would kind of plateau for about six months and then in another six month period it would decline rapidly and then kind of plateau off again.

Ash: Wow. What you said reminded me of something that Christine Brandon said, we spoke to Christine a couple of weeks ago. She has been living with dementia for over 25 years now. She was talking about she does not have as much ability to focus on the words of what people are saying, but she can pick up the body language and the sentiment, and maybe that is what your mom was having where she could respond to the kind of feel of what was being said, but could not really dig into the detail.

Stephanie Bendixsen: Yeah. That definitely feels like what she was doing and I think that was similar to when she would kind of just make things up. I think that was just her way of she could not recall any kind of real memory. Sometimes she would just fabricate something. “I have been there before,” or, “I did that,” or, “we had such a great time,” even if it was not true because she knew that it was a response that would be technically appropriate in that situation, even if it was not an actual truthful response.

Ash: Yeah, you said that often when you asked her or you tried to have a conversation with her about it, it came quite difficult. Did you ever get to have the conversation you wanted?

Stephanie Bendixsen: I do not think so. I was aware of the fact that it was so scary for her. We sort of treated her a little bit like a child, we were like, “There is just something a little bit wrong with your memory, but it is fine because we are all here for you and we are going to help you.” That was kind of the way we approached it. But I never had an intellectual conversation with her about it. It is so hard because I did not really have that relationship with her either. I think my greatest regret, well, my greatest sadness out of all of this is that I never really got to have a proper adult relationship with her. She was always my mom as a child, my mom as a teenager. Then when I was kind of in my 20s, she was sick and I was living out of harm and come to visit her as she said it progressively got worse. But now is the time of my life when I would have so many things that could I ask her and have an adult relationship with her, and have intellectual conversations about life and things. I cannot do that. I am really sad that I never got to have those conversations with her. Yeah, I think it was probably just the age that I was at and just the relationship that I had with her at that point. I did not feel confident in addressing anything in a confronting way. I just sort of took my sister’s lead and we, I suppose, treated her like a child in a way to try and make it easier for her.

Ash: Absolutely. It is so tricky to know you just want things to be easier, right? You just want her to be comfortable and when you found that the confrontation or pointing out things does not help, I can see that you just want to avoid that at all costs.

Stephanie Bendixsen: Yeah, and I think the biggest sadness my dad has and the greatest guilt is that I think all of us, and him in particular because he was her primary carer, wish that we had been more forgiving earlier of her aggressiveness and her forgetfulness and when she started to sort of making things up. It came from a desperation of wanting her to not be unwell. But I just wish that if she said something that did not make sense or was not true, I wish I just, earlier on, would have just been like, “That is fine,” or, “Okay.” You would get into this awful fight about it and then she would not remember anyway. It just made so many of the experiences that I had with her and that latter part of her life so horrible when I feel like it could have been easier if I just resigned myself to what was happening a lot earlier.

Ash: It does sound like, at least what you are saying, that your dad was having trouble accepting it as well and maybe if you and your sister and your dad could have had the conversation earlier then maybe all three of you would have gotten to a place earlier.

Stephanie Bendixsen: For sure. Yeah. I think there was so much denial particularly on my dad’s part. It was really difficult to talk seriously. We were never really a family of open communication, really. My dad is a very stoic person. We would never like — I do not know — when you just see this sort of American sitcom families where they share everything and they talk to each other about everything. We did not have that kind of relationship. I push for that relationship with him now because I see how important it is. I think having gone through something like this, I do not want to feel the same way at the end of his life that I have not been open with him in the way that I wish I had. But at the time, I definitely did not have the emotional maturity to take the lead on having in-depth discussions about it. I wish I had.

Ash: Yeah. You mentioned that your mum’s journey went through care in the home and then care in Aged Care facility. What was that process like?

Stephanie Bendixsen: Yeah. Initially when she was still mostly herself, but just could not function in a helpful way in the house anymore, she needed help for one with her insulin for her diabetes, but also she could not start or finish any task, really. There was stuff everywhere because she would carry things from one end of the house and then lose them and things would just pile up and there were dishes. It was all just a bit chaotic and my dad was still working full time. We had a carer come to the house to just take her to places to get a haircut or to go to the shops. Just things that would occupy her. Because then what started happening was when my dad was working from home, he was working in a pool pump repair sort of service that he was working in the garage a lot when he was not out visiting people’s houses. She would just come out to ask him a question for every decision she needed to make throughout the day. “What should I have for lunch?” “Where is the bread?” “Should I go to the shops to get some bread?” “I cannot go to the shops, can you take me to the shops?” I do not know. It was just exhausting for him.

Stephanie Bendixsen: Having someone come there to just sort of be with her a couple of times a week to help her kind of manage herself and give her things to occupy her was really helpful. I think once it got to the point that she became more sort of incontinent, I think, that is when my dad had to look at Aged Care for her. Because not only was it about managing her insulin but every aspect of her life she needed help with. The decision to put mom in full-time care was probably the hardest decision that my dad ever had to make. He felt so guilty about it and he constantly sorted of explaining to us why it need to happen. We were like, “Dad, it is fine.” We are not able to be looking up to her every day. Also my dad had a heart condition and the stress was making it worse and it is a whole thing. Then we started looking into Aged Care facilities for her and I think that process is probably the most traumatic of the whole thing because when you look at what is available to you since Aged Care has been privatized, it is just awful. There are so many places we looked at which were awful. We found a place that was really lovely and had this kind of therapeutic garden and they had a really lovely activities program and it was just really well-staffed with people that were all dedicated to the kind of enriching the life for people that were there.

Stephanie Bendixsen: It was astronomically expensive. We looked at all options that we could to try and afford it. But not only is it expensive on a weekly basis to be able to afford the care and the room but you need to put down a deposit. In this case, it was half a million dollars. A deposit that is refunded when that person dies. But that was like, my dad was living off his superannuation at that point and he is like, “I have nothing to live off if I put all my money in this deposit.” Then on top of that he needs to pay the weekly rate. It was just out of control. We ended up having to sort of settle for one of these places that just seemed like something out of a nightmare. It was awful. When we took her there she was still cognizant enough to be aware of what was happening and she was like, “Please do not make me live here. It was awful.” The Aged Care situation. No one wants to think about it and no one wants to focus on it, but we are all going to get old. Some of us are going to end up there earlier than we would like. The poor staff, there was just not enough and they are all overworked. Yeah.

Ash: Yeah. I am optimistic that through the pandemic and through the Royal commission, there is going to be a larger amount of scrutiny on the industry and I am hopeful that we can see some marked changes on the way these things are done. But you are right, there are some locations where it is terrible and the system does need to be looked at very closely, I think. I want to come back and underscore some of what you said. Not necessarily digging into it but just to underscore. When you are talking about care in the home, it is nice to hear that the care, at the beginning, was not necessarily hands-on care, but just social care and taking her out to do things. I think that at least for myself I have a misconception that care in the home will mean showering and cleaning and these sorts of things. But just to be there with her and to give your dad some time away, that sounds like that would have been very important.

Stephanie Bendixsen: Yeah. I said, she loses the ability to communicate in a kind of normal way. You really need someone who understands what enjoyment of life can be like a person like that. Sometimes it is just yet taking them to the park or going for a walk or experiencing something that they can enjoy at the moment. Because towards the end, mom was literally just living in the present tense. She had no concept of the past or future. It was just everything that was happening to her at that moment she could react to. But you could not say, “Remember this,” or, “Tomorrow we are going to do that.” She would not be able to comprehend what that meant. It was just that right now, we are here together and that is good.

Ash: Yeah, absolutely . Now, can we move to your work as a Dementia Advocate? What do you do in that capacity?

Stephanie Bendixsen: Sure. Yeah. Probably the main thing is there is a big memory walk and jog that happens every year. That is something that we try to promote a lot this year. It was obviously a bit more difficult with the pandemic, but that is an event that happens in most states around the country and it is a great fundraising opportunity. In my work in video games. I do a lot of fundraising for charity through live streaming. I think the first year I raised $15,000 through that and the second year it was 25, so it was really exciting fundraising, just for whatever sort of preconceived ideas people have about gamers they are very generous for a cause. It was really, really great.

Ash: This would be your streaming and event and people are tuning in and donating?

Stephanie Bendixsen: Yeah, that is right. Or just video games. I will just stream video games and people will donate. If you are streaming for a cause people are always really keen to get on board. Then the other thing was that I just went in the sort of early stages of becoming an ambassador. I went down to Melbourne and visited Dementia Australia and learned a lot about the facilities that they have been working on for people and getting an understanding of how they can help not only families living with someone who has been affected by dementia, but the kinds of resources that they are providing for Aged Care workers. In the lobby, they had a range of furniture and items that they could show you are useful to have in the home for someone that is living with dementia. When I talked about my mum struggling to sit down in a chair properly, it all comes from deteriorating ability to manage depth perception and contrast and colour, particularly when you are lowering yourself into a chair. A lot of the time a person with dementia can no longer distinguish where the seat of the chair is compared to the floor. Quite often it is about having a chair that has a seat that is a different colour to the rest of the chair and there is a different colour to the floor. That helps a lot. The same with the toilet seat. If you think about a toilet in a bathroom and if the bathroom floor is white and the toilet is white and the seat of the toilet is white, it just becomes one blob in the vision. If you can get a toilet seat that is black on a white toilet and that immediately becomes easier for someone to kind of identify, “Oh, that is where I need to sit,” things like that.

Stephanie Bendixsen: To better understand what that is like, there was this incredible VR experience that they were showing to Aged Care workers to communicate a sense of what it is like to be a person living with dementia. It kind of puts you in a first-person experience with limited visual abilities to understand what that might be like. A lot of the time it is kind of shadows doing strange things which look a bit scary. Everything is a little bit blurry. As you say like rugs and certain patterns on the ground can appear like a hole. Sometimes you will see someone with dementia will be kind of skirting around things because they think that there is a big chasm in the ground there when it is. These are all things that you get frustrated when you are with someone because you are like, “What are you doing?” You do not understand because you do not have the ability to perceive what they are seeing. Again, I had no idea that that is what dementia was. I thought she would just forget things. I was struggling to understand why suddenly it was difficult for her to walk up and down the stairs.

Stephanie Bendixsen: That was all really helpful. That was really incredible. That is one of those experiences where VR can be so useful because it really puts you in the space of someone with a condition that you may not understand and suddenly from that first-person perspective be able to experience it yourself. Then it kind of shows you the different amendments that you could make to your home to minimize the negative aspects of that experience for someone. Taking away the rugs and putting some contrasting colours and shades into some of the sorts of household appliances, large signs on walls with a picture of a toilet or a picture of a bed to show you. When all the doors are closed, it just looks like some weird house of mirrors, I think, for someone with dementia. They struggle to turn taps on and things. Things like disability taps and stuff are much easier. That means that that person is going to be able to live at home with you for a longer period of time which is ideal, really. That was really useful.

Stephanie Bendixsen: Then there was an app that they developed called A Better Visit which I wish I had known about it or we should have been completed rather when I was visiting my mom. I really had these very mixed feelings about going to visit her because every time I see her I knew she was going to be worse. I was waiting for the moment when she would not recognize me at all. Sometimes I feel like I would stand in front of her and I would wait for her to recognize me first and I could see her looking at me like she was trying to understand what she was looking at, like she had some recognition but she did not say why. Then I would say, “Hi, Mom, it is me, Steph, your daughter.” Then she would react really lovely and she would be like, “Oh,” and then she be telling everyone, “This is my daughter. She has come to visit me,” but I feel like she needed that prompt at the start because she could not make the connection on her own. Then we would have these sort of visits where I would take her for a walk and I would tell her what I have been doing and she just kind of, “Mmm,” and reply and say, “Oh, how nice.” Then that was kind of it. All I could do was talk and tell her things and she could not respond in any kind of meaningful way. But the app gives you kind of like little mobile games that you can use with a touchscreen that I guess a quiet child. You would give to it to a toddler maybe. But are visually engaging in a way that would be really wonderful to share with someone who has the limited cognitive ability. They are not hard games, they are not puzzles that you need to solve in any kind of complex way. They really are just very basic colouring in or sensory kinds of things. But it was a really clever thing to design for people who are just looking for a way to interact with someone with dementia when they perhaps have lost the ability to communicate in the whether they would like.

Ash: Yeah, and it links to what you were saying earlier about your mom was just living in the present and that she did not necessarily have access to the past and could not really make plans. But if she could be highly engaged in what was going on in the moment, that was probably really worthwhile. Actually, having a lot of conversations with people who are high up in Aged Care organizations, there is a shift that is moving much more towards experience-based care and I find that to be really, really exciting because it says that it is still worth having experiences whether or not you form memories, whether or not it will be something that stays with you forever or not, the actual moment is important. I like the sound of this app A Better Visit because it contains that in it as well.

Stephanie Bendixsen: Yeah, and I think for a lot of people who are struggling to, I guess, emotionally deal with what is happening. I think the hardest part of other visits because you do not know how to how to spend that time together. Then it makes you want to not go because you start to dread visiting because it is just going to be difficult and emotionally distressing for everyone. Having an app like that to kind of bridge that gap is just invaluable, I think.

Ash: Absolutely My grandfather was in a care facility for… not sure how long actually, I was quite young at the time but I remember visiting him and the feeling of not really sure what we do. Do we just sit here and be with him, he does not know who I am, but I guess I will sit with him. Now, moving from the app to technology work in gaming and technology, how do you see technology becoming more involved in Aged Care and care for people with dementia?

Stephanie Bendixsen: I think because as we were talking about people with dementia really do live in the moment and react to, I guess, visuals, stimulus. I think there are really wonderful things that can be done with, I guess, touch screen applications to just create visually engaging things at the moment. At the moment when you sort of go to an Aged Care facility, there is usually maybe individual rooms and there will be a common room with a bunch of chairs and a TV. That is kind of it. Then they will have maybe a few activity days where someone might come with a dog or maybe they will have like a French theme today or something like that. Then the staff will wear berries or something. I feel like from the start of the day to the end of the day, your condition would potentially just get worse because you are just staring at a wall or you are just in a TV room with 20 other people. If there could be more of an emphasis on creating a sort of stimulating engagement through touchscreen technology, that would be really incredible.

Stephanie Bendixsen: There has also been just some really great indie games just for regular gamers that follow the story of memory loss and Alzheimer’s disease and dementia that are just made by people who have been touched by it in some way and want to share that experience with someone. Because video games are so interactive and so experiential compared to more passive mediums like film or literature, it really does put you in a presence of mind to really think about what that must feel like. I think that is such an important way to be telling those stories as well.

Ash: What are some of those titles on those games that you are talking about?

Stephanie Bendixsen: I cannot remember off the top of my head, but I can send you a list afterward.

Ash: That would be great. Yeah, thank you.

Stephanie Bendixsen: I think there is at least two that I have played that were super affecting for me.

Ash: Cool. We are just about out of time. Is there anything that you want people to know about your experience with dementia or anything at all you want to talk about before we go?

Stephanie Bendixsen: I suppose just that the period of diagnosis at the moment is still really difficult, but I know that there are some advancements being made in that area to try and get an earlier diagnosis. I suppose the other thing that I would say is just that there are actually really great resources out there. Obviously, if you are struggling to come to terms with the reality of what it means, it is difficult to kind of find the impetus to explore those options for help. But the sooner you can, the better because I feel like if I would known all of the stuff that I have learned since becoming an ambassador then it would have been really useful for both myself and my family and for my mom as well if we had known that there were different resources that we could have lent on for support and for advice and to kind of understand what she was going through a lot more. Because I think that was just a big part of it is just not fully understanding the disease and understanding why she was behaving the way she was behaving and the various stages of progression. I think that the other hardest thing too is that it is just different for everyone. Some people advances really quickly, some people advances over a very long period of time and you really just do not know how quickly that is going to happen.

Stephanie Bendixsen: I mean, I did not even know initially that it was something that you could die from. But her whole body ended up sort of shutting down and accelerated over the last sort of two years of her life. She went from being able to have something of a conversation to just her body was no longer able to breathe and swallow and eat and do all the things that it needs to do to stay a lot. I wish I had known all of them so that I could have prepared myself for every eventuality and know what was ahead for us.

Ash: Yeah. Thank you so much for your time today, Steph. This has been a really great chat.

Stephanie Bendixsen: No worries. Thanks so much. I hope I did not just talk forever. I tend to do that.

Ash: No, no. No, it was really good, and thank you for being really vulnerable with it and being open to talking about difficult things.

Stephanie Bendixsen: No worries. Thanks so much.

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