Losing Greg: A Dementia Story

tonight we bring you a very special episode of Dateline following one man's journey 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 moods speech and even his self-identity he and wife Janet's were forced to weigh out care options would Janet care for him at home 24/7 or would he eventually go into a nursing home late last year Dateline followed Greg and Janet as they experienced a unique alternative in Denmark a dementia village where the focus is on independence and dignity it offered Greg and Janet a ray of hope for their future but sadly only a few weeks ago Greg died suddenly so tonight's emotional story is dedicated to Greg Kelly his devoted wife Janet and their efforts in raising awareness of the 26,000 Australians suffering from younger onset dementia this is their story [Music] [Music] I'm great Kelly I'm known as Kel and I have young onset dementia in particularly I have frontotemporal dementia and young onset Alzheimers bananas Pepe to peers ajar crunchy peanut butter I'm up I'm up heavy dementia is a disease usually associated with old people but Greg was diagnosed at age 59 all right I just don't know where to go I can't okay you now have a champagne moment because I can't remember all what peanut butter comes under I've called it the champagne moment it's where information gets put in and then suddenly it just goes and I got no wire control that in my head that's what people were young onset dementia have for 40 years Greg worked in finance but his dimension now makes something as simple as grocery shopping overwhelming we've got everything Pepe [Music] for Gregg and his wife Janet caring for their Queensland property has become too difficult I just get so stressed about all the things that that I just can't do and I know that you can't do it honey I can't talk about this because I'm now anxiety I'm having champagne in it I can't do any more and it's upsetting 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 and black pants and his black sunglasses he walked towards me and all of a sudden I realized that I was in love with Gregg but then Greg's behavior and moods began to change there was a time when I went to buy some coffee and I couldn't work out the change from a cup of coffee and Greg's a mathematical genius and I come home I was crying I said to Janet I say there's a major problem at first doctors thought Greg was depressed and it took four years before a brain scan confirm the diagnosis and he was able to show me on the screen there is your frontal lobes and the they're getting eaten away and go won't get your affairs in order Greg Kelly because this is a terminal illness worldwide the average is six or eight years sure some might go twelve or fourteen but some only go to I'll by the way it's a second eyes killer in Australia what why doesn't people know about these it's really scary we don't really know what's going to happen we don't really know how quickly this disease is going to progress with Greg and so we don't really know what is you know where the future will take us the Royal Commission into aged care has begun in Adelaide it'll probe thousands of allegations of substandard care mistreatment and abuse by service providers a key issue being reviewed in the Royal Commission into aged care is staffed to patient ratios on average patients in aged care receive less than three hours of care per day we have a pact and that is that Greg is never going to go into an aged care facility younger onset dementia affects people aged 30 to 65 and with limited care options they're often placed in nursing homes for the elderly we are not elderly so don't put us into these homes right and think that everything's going to go okay because we are not elderly and if someone bloody smacks us or hits us with a pillow the chances are we're going to get up and smack on the harder [Music] while there are some homes providing excellent dementia care in Australia they're rare and can be costly we're heading off today which is pretty cool so they're on their way to Denmark to experience a unique alternative I'm looking forward to having a look at what they do over there with young onset dementia they're going to a village where every resident has dementia I think we have a good model in Denmark for our dementia care I could say we were Denmark's first dementia town hello and welcome thank you kale has a game and it is the director of this spend Borg dementia village they live 125 residents in the dementia town and the youngest one is 45 and the oldest one is over at Quantrill years old the village is being created to give residents a normal life they can live independently and carry on with the activities they enjoy doing with more staff than residents and we have about 120 caregivers or staff members or together and then we have 30 about 30 volunteers [Music] the main corridor has been designed like a main street with a village shop just like any other corner store where residents to make their own decisions about their daily needs got everything [Music] this one I want to buy this one a normal day-to-day life buying things at shops and using money is quite stressful because I know that of them I'm losing a lot of maths Cape Cape Cape ability if I was to have to move into this environment then I think that it's extremely important that we do have a shop similar to that [Music] staff in Australian aged care are often under trained and don't have specific expertise in dementia but roughly 52 percent of the residents they care for suffer from the disease here at the village all of the staff and the 30 volunteers are specifically trained in dementia care so we're heading yagi know basically how basket heart yeah miss could be eccentric are you so the Kabul defense a little fact Geetha the hairdresser enjoys the conversation she has with her usual customers even if they never remember her for the Dickey assemble him news quality takea clear when a lawyer for him and no shoeshine the KIAC Marsha submit it matters do somebody I have so there's no media today or temperature my eyes for the England I'm Janet how long have you been here for almost doctors 37 and so in loves how old are you now 46 Greg is 62 but when he was diagnosed he was 59 did you work some finance banking finance financial planner I [Music] think that when we met that lovely man and he started to tell us his story I think that that was really difficult for great seeing people with dementia have roots in my heart I don't know the words to you but at roots of my heart I can understand how people put up the hand to actually openly come here and live here and be happy here I don't want to end up even here I don't want someone sharing me I don't want someone wiping my bum and all this sort of like and morality that's where dementia takes you losing independence is what worries Greg most right yes and they lay eggs yes I have been here in a few years three years in the village yep yeah so he takes a look inside the private lives of some of the residents with younger onset dementia to get a sense of their quality of life oh they is 59 he grew up raising chickens and was a hard-working handyman his whole life and his apartment at the dementia village reflects that no one can take your jug you got your name on it yes yes 63 year old Birgit was an art teacher and unlike ovae's bachelor pad her apartment is more of an art studio yeah this has just started over and I had my mate here he lives in the first floor but we don't live together we you just go and visit and do things together and travel and things like that and so you can actually just go oh we might go for a trip together yeah we could do that yeah we could but you're not kept in here you're free this is my flat yeah I have the key I can lock in a rock I can unlock excellent and these are my grandchildren the small one and the biggest sister let's say they came to visit would they be able to stay here with you my grandchildren yet if they maybe way tonight if I could fit the Linden Lake just stay here you could stay this is my yeah yeah this is my place and I just decide what happens here yeah yeah place your rules exactly yeah that's important to Greg and Janet who'd prefer to stay together if Janet Sethe want to move to the dementia child it is possible as well that's how our law I would love it if I could become a citizen of Denmark today and knock on the door and say can we have an apartment overlooking and just yeah write it out each room or each little 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 village has group homes areas which look more like a visit to Grandma's house than a visit to a nursing home all of this is part of Denmark's National dementia strategy with the goal of making the whole country dementia friendly they've invested 63 million euros into developing programs and facilities to ensure that people with dementia can live a safe and dignified life dementia time and spend poise for everybody it's not only for rich person's is for everybody this is the same rent they pay as I did before it's not the more expensive for residents but they pay rent just like you do when they live in a flat in there another place and they pay for their meals but they don't pay for care and nursing that's free and they have paid it through their tax they're paying tax or their working life [Music] we got married for all the right reasons and that was basically you know we don't know what's coming up we don't know what's ahead and we are and were in love and dryer but dementia has taken its toll on Greg and Janet's relationship as the disease worsens so does the impact one of the more difficult sides of his disease is his mood swings a bit like Jekyll and Hyde I guess you know what I would say is that he's lost control he will fire up and he will not stop greg has been unable to recognize how far he's moving towards an aggressive violent person the Greg that I have known for 20 years and the Greg that he's been my partner you know we're we're married that Greg a great percentage of that man has gone so I see changes in him now every week whereas before the changes were months before I'd see another change now it's more frequent so you know you can get very cranky you can become intolerant I think Janet wants me still to be the person that I was as opposed to the person I'm slightly turning into 62 year-old Greg Kelly is facing the inevitable decline that comes with dementia he's come to Denmark to learn about its cutting edge care but his thoughts are focused on how this cruel disease is already changing him when you've got grandkids and children's saying look I can't go there anymore and see her or see him okay that's not my mom or that's not my dad if it was a puppy gone through that you'd you'd put it down losing control of bowels and all the rest of it are you going to keep that puppy alive see your benefit or you are not understand if that puppy says you know what this is too difficult and I want you to remember me running around the paddock chasing the ball I choose to have him in whatever form that takes for however long and I would be I would prefer to nurse him I would prefer to nurse him and be with him through to the end at this point it's unclear how long it will be before dementia takes his independence away 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 be on on a motorbike then I've got to have something like this twice a week residents get the chance to go for a bike ride into the city I'm sure these electric motors can be hotted up I'm sure that we can get a few more kilometres an area out of one of these so yeah my mana might be a bit faster than the rest of them Greg appreciates what the dementia village offers its residents but there are moments when he feels like none of it applies to him I like to in some ways think that I don't have dementia but when I'm talking to them or when I try to do something it's clear I do have dementia I openly say that I doubt if they'll be a cure or something to slow it down during my span with this disease but that doesn't mean that I don't you know pray that it will happen during my time then when reality hits the loss of freedom becomes extremely confronting at spend Bourg GPS trackers are used to preserve a sense of Independence resident lease had one in her bag throughout the bike ride I'm gonna show you what we how we track when they leave the building we have this one to put in her you probably can track her with this one what's a good track yes and this one here we could put it in her pocket or hide it and now I can I can track her for every three minutes they come a new view way of how long how far away from here she is right yeah but this one here when we put it in her purse it let her take a walk without us 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 have a nice time see you later I'm still still I understood what you were just saying you know you're you are very capable in your fine to still go off on you yeah but this is a problem that Greg and I are currently having anyway where he likes to go out and explore and it's very concerning so I thought that that GPS tracker system was brilliant and I have to be honest that it's something that I would feel really comfortable introducing in our life now but I can tell that Greg would probably not agree to that idea I'm starting to understand that people want to know where I am though I'm not ready to bow down to this disease trackers in your shoes and trackers in your clothes great for people who regularly wander off and that sort of thing I'm just not at that stage at this present as their time at that dementia village comes to a close Greg and Janet have different feelings about their experience Janet wants to stay [Music] if I was a resident of Denmark I don't believe that I would be as scared of the future and of my life now if I had what we have just witnessed here in Spain Borg [Music] Gregg on the other hand is determined to avoid the kind of care a dementia Village offers seeing the facility in the way it operates was fantastic I think for me it will be rather confronting to be in that facility at this stage because as we drove away from there today and I was looking in through the windows I wouldn't like to be in there and having my family drive away from me Greg and Janet are about to head home to what we now know will be Greg's last Christmas with Janet and his children and grandchildren [Music] I want to be the person in the world that the people are talking to me all around Australia as I go around telling the caravan with my wife a saying man you still here it's 25 years or 30 years yeah that's if you say to me what exactly is the dahle that is all [Music] [Music] you [Music]

Channel: Journeyman Pictures

Views: 532,180

Rating: 4.8378377 out of 5

Keywords: Journeyman, Journeyman Pictures, dementia, early onset dementia, treatment, healthcare

Id: zmHgTKVTLiE

Length: 27min 40sec (1660 seconds)

Published: Sun Apr 07 2019