Losing Greg: A Dementia Story

tonight we bring you a very special episode of dateline that follows the journey of a man with younger onset

dementia

. Greg Kelly was diagnosed three years ago and began the difficult process of planning for his future as his illness worsened, affecting his mood, speech and even his self-identity. and his wife Janet were forced to weigh care options: Would Janet care for him at home 24/7 or would she eventually go to a nursing home late last year? The date followed

greg

and janet as they experienced a unique alternative in Denmark, a

dementia

town where the focus is on independence and dignity, it offered

greg

and janet a ray of hope for their future, but sadly just a few weeks ago greg died suddenly , so tonight's emotional

story

is dedicated to greg kelly, his devoted wife janet and their efforts to raise awareness for the 26,000 australians suffering from young onset dementia this is their

story

i am greg kelly i am known as kell and i have young onset dementia in particular I have frontotemporal dementia and young onset Alzheimer's Pepe bananas jar of two pears crunchy peanut butter Dementia is a disease generally associated with older people, but Greg was diagnosed at age 59. okay, I just don't know where to go, I can't, okay, now you have a champagne moment because I don't remember what peanut butter is included in, I called in the champagne moment is where you enter the information and then, all of a sudden it just disappears and I have no way to control it in my head, that's what people with young onset dementia do for 40 years.

Greg worked in finance, but the size of him now does something. As simple as shopping is overwhelming, we have it all fun for Greg and his wife Janet. Looking after his property in Queensland has become too difficult. I get so stressed about all the things I can't do and I know you can. I don't and honey, I can't talk about this because I have anxiety now. I'm going to have champagne again. I can't do more and it's annoying to even talk about it. It's a situation they couldn't have imagined when they met 21 years ago and fell in love when I saw him in his leather jacket, black pants and black sunglasses, he walked towards me and I suddenly realized he was in love with Greg, but then Greg's behavior and mood began to change. change there was a time when thank you very much I went to buy some coffee and I couldn't calculate the change for a cup of coffee and Greg is a mathematical genius and I came home I was crying and I told John I told him that there is a At first the problem was bigger, the doctors thought Greg was depressed and it was four years before a brain scan confirmed the diagnosis and he was able to show me on the screen that there are your frontal lobes and they are eating them away and go away and get your business done.

In order, Greg Kelly, because this is a terminal illness worldwide, the average is six or eight years, sure some can last 12 or 14, but others only last two. Oh, by the way, it's the second leading cause of death in Australia. Why don't people know about this? It's really scary, we don't really know what's going to happen, we don't really know how quickly this disease will progress with Greg, so we don't really know what the future holds for us, the royal commission. The senior care program has started in Adelaide. It will investigate thousands of allegations of mistreatment and abuse of substandard care by service providers.

A key issue being reviewed at the royal commission into aged care is the ratio of staff to patients - on average, patients in aged care receive less than three. hours of care per day we have a pact and that is that Greg will never go to a senior care center. Younger-onset dementia affects people between the ages of 30 and 65, and with limited care options, they are often placed in senior nursing homes. We are not elderly so don't put us in these homes and think that everything is going to be fine because we are not elderly and if someone hits us or hits us with a pillow, we will most likely get up and hit us. make them more difficult, while there are some homes that provide excellent dementia care in Australia, they are rare and can be expensive, we are leaving today which is great, so you are on your way to Denmark to experience a unique alternative and we are Eager to get a look at what they're doing there with juvenile dementia, they go to a town where all the residents have dementia.

I think we have a good model in Denmark for our dementia care. I can say that we were the first city with dementia in Denmark. Hello and welcome, thank you. You, Annette, are the director of the Svenborg Dementia Village. 125 residents live there. The youngest is 45 years old and the oldest is over 100. The village is being created to provide the residents with a normal life that they can live independently and carry out. Continue with the activities you enjoy by making more staff than residents and we have about 120 caregivers or staff members in total and then we have about 30 volunteers.

The main corridor has been designed as a main street with a village shop like any other corner shop. where residents can make their own decisions about their daily needs they have all this I want to buy this in normal everyday life uh buying things in stores and using money is quite stressful because I know I'm

losing

a lot of k-pop cape skills in math. If I were to move into this environment then I think it is extremely important that we have a shop similar to what staff often find in Australian aged care. They are trained and have no specific experience in dementia, but approximately 52 per cent of the residents they care for suffer from the disease here in the village, all staff and 30 volunteers are trained specifically in dementia care and enjoy the conversation that he has with his usual family members.

Customers, even if they never remember her for the gears, the quality shield, I'm Janet, how long have you been here for almost a year, almost a year, yeah, and I was 37 when I got the message from the doctors. 37 something Lars, how old is he? Now you expect to be 468 years old on December 46. Yes, Greg is 62 years old, yes, but when he was diagnosed he was 59. Did you work on any financial bankruptcy? 42 years of banking, finance, financial planner, I think when we met that lovely man, um and he started. Tell us his story. I think it was very difficult for Greg to see people with dementia.

He tears my heart. I don't know the words for you, but it tears my heart. I can understand how people raise their hands to say it. come here openly and live here and be happy here I don't want to end up even here I don't want someone to bathe me I don't want someone to wipe my butt and all that kind of stuff and actually that's where dementia comes in it leads you to lose your mind. independence is what worries Greg the most oh, okay, yes, big demand and they lay eggs. Yes, I've been here for three years, three years in town, so get an inside look at the private lives of some of the residents with younger onset dementia.

To get an idea of ​​the quality of life he is 59 years old, he grew up raising chickens and was a maintenance worker all his life and his apartment in dementia town reflects that no one can take your jug, it has your name on it . Yes, this is from him Yes, hello, come on, hello, how are you? I'm fine. Birgit, 63, was an art teacher and, unlike Ova's bachelor pad, her apartment is more exactly an art and is a studio for your painting, that is also my painting. Wow, yes. this just started again so let's see how it ends you're amazing and I have my friend here he lives on the first floor but we don't live together we just go and visit and do things together and we travel and stuff like that and so you can go oh uh , we could go on a trip together, yes, we could do it, it's okay, yes, we're okay, but you're not held here like you're scared, this is just my apartment, I have the key.

I can lock and I can unlock excellent lots of space lots of space and these are my grandchildren, the little one and the big sister, let's say they came to visit, could they stay here with you? My grandchildren, if I could accommodate them. they could stay here you could stay here this is my yeah yeah so they could come and this is my place and I just decide what happens here yeah your place your rules exactly yeah that's important to Greg and Janet, who would prefer to stay. together, if janet wants to move the child with dementia, it is also possible, that is our law, she is beautiful, yes, I am moving here, yes, you will be welcome.

I would love to become a citizen of Denmark today and call. the door and say: can we have an apartment with a view of the chicken coop? And just, yeah, get it out. Each room or each small unit reflects that person's inner self and I think that's beautiful for older residents who can no longer live in their own apartments. The town has a group. areas of homes that are more like a visit to grandma's house than a visit to a nursing home. This is all part of Denmark's national dementia strategy, with the aim of making the entire country dementia friendly.

They have invested 63 million euros in the development of programs and facilities. to ensure that people with dementia can live a safe and dignified life city of dementia and spending children for everyone is not just for the rich per person it is for everyone it is the same rent they pay as before it is not more expensive for residents but they pay a rent like when you live in a flood somewhere else and they pay for your meals but they don't pay for the care and nursing which is free and they have paid for it through their taxes, they are paying taxes on their work.

In my life, we got married for all the right reasons and that was basically, you know, we don't know what's coming, we don't know what's coming and we are and were in love, oh, that's beautiful, but dementia has taken its toll on Greg and Janet's relationship as the illness worsens so does the impact. One of the most difficult sides of her illness is her mood swings a bit like Jekyll and Hyde. I guess you know what I would say is that she has lost control, she will get angry and she won't. stop, greg has not been able to recognize the extent to which he is approaching a violent and aggressive person, the greg that I have known for 20 years and the greg that has been my partner, you know, we are married, that greg, a large percentage of that man is gone.

I see changes in him now every week, whereas before the changes were months before I saw another change, now it's more frequent, so you know you can get really cranky. um, you can become intolerant. I think Janet wants me to remain the person I was as opposed to the person I'm slowly becoming. Greg Kelly, 62, faces the inevitable decline that comes with dementia. He has come to Denmark to learn about cutting-edge care, but his thoughts are focused on how this cruel disease works. It's already changing when you have grandchildren and children saying, look, I can't go see her or see her anymore, I can't, that's not my mom or that's not my dad, if it was a puppy going through that, you, if you would leave it aside for

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control. of the intestines and everything else, are you going to keep that puppy alive for your benefit or are you going to understand if that puppy says you know what this is too hard and I love you? to remember me running around the paddock chasing the ball I choose to have him in whatever form is necessary for however long and I would rather take care of him I would rather take care of him and be with him until the end at this point It is not clear how long it will be before dementia takes him independence, for now all Greg and Janet can do is put one foot in front of the other and enjoy the time they have left together.

If you can't ride a motorcycle, then me. We have to have something like this twice a week, residents have the opportunity to take a bike ride around the city. I'm sure these electric motors can get hot. I'm sure we can go a few more kilometers per hour. of one of these, so you know, mine may be a little faster than the rest. Greg appreciates what the dementia village offers its residents, but there are times when he feels like none of it applies to him. Somehow I like to think that I don't have dementia, but when I talk to them or when I try to do something it becomes clear that I do have dementia.

I openly say that I doubt there will be a cure or anything that will slow it down during my time with this disease, but that doesn't mean you don't know, pray that it happens during my time and then when reality hits, the loss of freedom becomes extremely conflictive. Thank you very much at svenborg. GPS trackers are used to preserve the sense of independence. Resident Elise had one in her bag during the bike ride Hi, how are you? I'm fine. My name is Benta. I'm better. Hello. Welcome. I'm Janet. Yes, welcome. I'm going to show you how we track when they.

Get out of the building, we have this one to put on her suit and we can track her with this one it's like a tracker and a device, yeah, and this one fromhere we could put it in her pocket or hide it and now I can, I can track her. Every three minutes a new view appears of how long and how far she is from here, yes, but this one here, when we put it in her bag, it allows her to take a walk without us, so I love it, I think that's an idea fantastic. It gives us a lot of freedom and we can be good friends all the time because I can say go for a good walk and have a good time.

See you later. You could write the name of what you do. Yes, yes, so yes. Greg likes to wander. Now I'm still going, I'm not independent, I know I'm full of life, I'm just kidding. I'm very good, yes, yes, he is, obviously, you know, but, but, all the jokes, obviously, I understood what you just said, yes, no, you. Are you very capable and are you okay if your eye still goes crazy? Yes, but this is a problem that Greg and I currently have is that he likes to go out and explore and it's very worrisome, so I thought that GPS tracking system was brilliant and I have to be honest, it's something that I'm really bothered by.

I would feel very comfortable introducing it into our lives. Now, but I can tell that Greg probably wouldn't agree with that idea. I'm starting to understand that people want to know where I am. Look, I'm not ready to bow down to this disease. Trackers on your shoes and trackers on your clothes. Brilliant. for people who regularly drift away and that sort of thing um, I'm just not at that stage right now as their time in the dementia village comes to an end. Greg and Janet have different feelings about their experience. Janet wants to stay very. well thank you if I were a resident of denmark I don't think I would be so afraid of the future and my life now if I had what we just witnessed here in svenborg greg on the other hand is determined to avoid the The kind of care that a village offers for people with dementia.

Seeing the facilities and the way they work was fantastic. I think it would be quite challenging for me to be in that facility at this stage because as we were driving away from there today I was looking out the windows. I wouldn't want to be there and have my family move away from me. Greg and Janet are about to return home for what we now know will be Greg's last Christmas with Janet, his children and grandchildren. I want to be the person in the world, people talk to me all over Australia while I'm towing hand luggage with my wife and say man, you're still here, it's 25 or 30 years, yeah, that's if you told me what exactly the objective that is carbon your