17 years old, parent was diognosed with early onset nearly 3 years ago

[Em17]

Your situation makes me think so much about mine and I have my terrible days where I just want to cry and hate the world, but my heart honestly goes out to you and your family, you are so young to be dealing with this. I have two young boys which most of the time keep my mind off things, but its always there in the back of my mind. Like I said before don't forget your a teenager you need to be living your life being you, your Dad wouldn't want you missing out. It is hard when it comes to people understanding, I think people still look at dementia being an old person's thing, and people who have never been affected by it, are quite ignorant to it, they just think its people getting confused. Theres so many different aspects to this disease and everyone copes so differently. No way is right or wrong we are all human and deal with things differently.
Hope your all doing ok.
Take care of yourself xx

Thank you so much, I hope you and your family are doing okay. I’m currently working on my EPQ ( extra project qualification) which I took on extra with my 3 subjects. It’s based on early onset Alzheimer’s an the effects that has on individuals and young adults. In this I talk about how people stigmatise alzheimers as a disease of the elderly and how it’s only effects memory when actually there are loads of different ways in which the disease affects people. After I produce my essay and presentation, to get my mark I then need to talk about the subject in front of class members. I think once I carry this out and be honest with how i feel that as a young adult going through this journey, that I’m put under a huge amount of pressure and responsibility, and then I hope that class mates will get a better understanding of how a young family like mine copes and feels. I’m debating wether to make a survey and post it on a thread so I can get an insight to how others in my situation feel and how they think their parent or spouse feels. I wish I could interview people so I could include a huge range of primary information and put across other story’s instead of just my own, but sadly interviews would be much too difficult unless I post on here asking people for their story’s.

 

[70smand]

I really feel for you em17. For years I tried to protect my own children from my dads Alzheimer’s as it deteriorated but I think it would have helped them if I had been more honest with them earlier. My youngest daughter only completed her A levels last year so I know how much stress you must be under as well as worrying about your parents. You definitely need some support and whether that be friends to lean on, although it may be difficult for them to understand , or just to have some fun and be a teenager with. Maybe you have other family members such as an aunt to confide in for support or a sympathetic teacher.
Your EPQ sounds amazing and from the heart. The research you are undertaking will help your understanding of the illness as well and may prepare you how to deal with it but remember that although there are trends and similarities everyone’s dementia is different. Maybe if you ask on a separate thread you will get a response from people who are willing to be interviewed, or complete a questionnaire for you.
You sound so incredibly mature and responsible and a real credit to your parents and I would love to give you a big hug and ask you to still be 17 if you can despite feeling such a burden of responsibility. I do wish you and your family well xx

 

[carolynp]

Dear Em16 my heart goes out to you too. So much to deal with at such a young age. Please know that members of Talking Point all over the world are sending you loving and supportive thoughts. I am one of the Australians who can be available to you at 2 am or indeed any other hour I’m awake. As an academic I applaud your concentration on your studies. This is your door to a future of your own. Life WILL get better and you will slowly find deeply understanding and sympathetic friends as you move forward. The special project is a BRILLIANT idea. Good luck. I’m here if you need me. You’re not alone. Carolyn. (One of the lurking oldies mentioned by another user above.)

 

[carolynp]

Sorry Em17 the sixteen was a typo! Aplogies. Carolyn. xxx

 

[Em17]

I really feel for you em17. For years I tried to protect my own children from my dads Alzheimer’s as it deteriorated but I think it would have helped them if I had been more honest with them earlier. My youngest daughter only completed her A levels last year so I know how much stress you must be under as well as worrying about your parents. You definitely need some support and whether that be friends to lean on, although it may be difficult for them to understand , or just to have some fun and be a teenager with. Maybe you have other family members such as an aunt to confide in for support or a sympathetic teacher.
Your EPQ sounds amazing and from the heart. The research you are undertaking will help your understanding of the illness as well and may prepare you how to deal with it but remember that although there are trends and similarities everyone’s dementia is different. Maybe if you ask on a separate thread you will get a response from people who are willing to be interviewed, or complete a questionnaire for you.
You sound so incredibly mature and responsible and a real credit to your parents and I would love to give you a big hug and ask you to still be 17 if you can despite feeling such a burden of responsibility. I do wish you and your family well xx

Thank you so much for your message and kind words. I completely understand that everyone’s dementia is different which is why I thought about the interviews, as it would give people an insight to how families view their situation, how hard caring for a loved one can be and how stigmatised the disease is. Unfortunately family backed off when they heard the news of my dads diognosis, some clearly thought they knew better than professionals as they didn’t believe he had it. When it got to the point where we lost our home an we’re practically homeless, none of the family tried to help, so it’s really only been the 4 of us. My brother understands and is usually the person I confide in, but he struggles a lot with stress and depression and as he is taking his gcses this year if decided not to put too much on him. I hope you and your family are also doing well x

 

[Em17]

Dear Em16 my heart goes out to you too. So much to deal with at such a young age. Please know that members of Talking Point all over the world are sending you loving and supportive thoughts. I am one of the Australians who can be available to you at 2 am or indeed any other hour I’m awake. As an academic I applaud your concentration on your studies. This is your door to a future of your own. Life WILL get better and you will slowly find deeply understanding and sympathetic friends as you move forward. The special project is a BRILLIANT idea. Good luck. I’m here if you need me. You’re not alone. Carolyn. (One of the lurking oldies mentioned by another user above.)

Thank you for your kind words, it’s lovely to know that this forum brings people from all over the world together to support and advise each other. I find that my EPQ allows me to express what I’m passionate about and give those who don’t know what it’s like, a little insight to what alzheimers is really like. I do struggle with getting to sleep and staying that way for the night, so it’s nice to know that I can come on here and talk about what’s on my mind. Sending you and your family well wishes

 

[Em17]

Hi Em17. I have a grandson aged 17 and his worries are so simple compared to yours - although he's lost touch with his father for various reasons. I'm so sorry about your father. And the loss of your home must be devastating. I'm 65. I can only say that life is long and yours will get better. I hope you, your mother and your brother will be able to support each other and face the future together. Please keep in touch with us on the forum. Much love to you all.

Thank you so much for your kind message,
It was very difficult as we had no idea where we were going to end up especially as it was exam time for me doing my gcses. Gladly it’s all sorted so I feel like were on track all we have to do is stick together for whatever comes as my dad deteriorates. Wishing you and your family well

 

[cath1124]

Hello, i have just joined and was thinking of starting a thread as my dad was diognosed with early onset when i was nearly 15. As he has had it for nearly 3 years im seeing him getting worse with each passing day. As a young adult studying science i understand why he acts the way he does, but am still confused and tend to get frightened when he does act out. I have never met anyone my age who has a parent with alzheimers, my brother who is 15 has been going on this journey with me which has been terrifying. The most unerving thing that has been put on me is lasting power of attorney, my mum and i will both be sharing it. This process will begin once i have turned 18 at the end of the year.

Hi Em17, I feel like I can relate so much to everything you’ve said on this thread. I’m 19 and my dad was diagnosed with early onset dementia 6 months ago, he’s only 58. I’m also at university but still living at home. I completely understand when you say it’s hard to talk to your friends about it. I’ve only told two of my friends but I still find it difficult to discuss it with them as I feel like they can never truly understand how heartbroken I am. I was also made POA and found it so upsetting even signing the papers. My mums health isn’t great and I feel like someday I will be left to pick up the pieces and it’s daunting not knowing if that is tomorrow or ten years from now. I feel at a loss in my life because of all the uncertainty in relation to my dad. My siblings are older than me and have all left home and as awful as this sounds I feel like they’ve escaped in a way that I can’t. I love my dad with my whole heart but I feel pain every time I talk to him. I miss him even when he’s in front of me because of how he’s changed. I’m terrified of what’s to come in the future

 

[Dj96]

Hi Em17, I feel like I can relate so much to everything you’ve said on this thread. I’m 19 and my dad was diagnosed with early onset dementia 6 months ago, he’s only 58. I’m also at university but still living at home. I completely understand when you say it’s hard to talk to your friends about it. I’ve only told two of my friends but I still find it difficult to discuss it with them as I feel like they can never truly understand how heartbroken I am. I was also made POA and found it so upsetting even signing the papers. My mums health isn’t great and I feel like someday I will be left to pick up the pieces and it’s daunting not knowing if that is tomorrow or ten years from now. I feel at a loss in my life because of all the uncertainty in relation to my dad. My siblings are older than me and have all left home and as awful as this sounds I feel like they’ve escaped in a way that I can’t. I love my dad with my whole heart but I feel pain every time I talk to him. I miss him even when he’s in front of me because of how he’s changed. I’m terrified of what’s to come in the future

Hi @Em17 and @cath1124 I couldn't relate more to you guys. I'm 21 years old and in my third year of University. My mum was diagnosed with dementia when I was doing my A levels. I remember the time it was awful. Its so hard to find friends or young people that even understand. Whats even worse is that people tend to focus on the patient so much that they forget that dementia affects the whole family. I attend every single appointment with my mum and yet nobody once has asked me about how I'm coping or managing. Yes I feel guilty for not being there enough for my mum but going home doesn't feel any better. My dad helps a lot too but he's also quite unwell so I understand how its such a worry that its all going to end up being me managing it all. My siblings are also much older than me and are not willing to get involved in the care of my mum so I know how it feels to be left alone. I definitely know how it feels when you miss the old them. I don't think I've come to accept the diagnosis this many years later but I think its a process. I'm always trying to jump ahead but seriously it doesn't help. I'm so scared too of the unknown but I'm trying to stop myself from doing that and instead trying to live every day as it comes. If any of you ever needs someone to talk to there are so many lovely people on TP. I think it would be great if there was a platform for young people with parents suffering from dementia could meet or talk. xxx

 

[Cat27]

Welcome to TP @Dj96
Do you get some support from your Uni?

 

[christelle]

Hello, i have just joined and was thinking of starting a thread as my dad was diognosed with early onset when i was nearly 15. As he has had it for nearly 3 years im seeing him getting worse with each passing day. As a young adult studying science i understand why he acts the way he does, but am still confused and tend to get frightened when he does act out. I have never met anyone my age who has a parent with alzheimers, my brother who is 15 has been going on this journey with me which has been terrifying. The most unerving thing that has been put on me is lasting power of attorney, my mum and i will both be sharing it. This process will begin once i have turned 18 at the end of the year.

Hi @Em17... I am also 17 and have a dad with early onset dementia. He is 66 and was diagnosed when I was about 13. He was living on his own but unfortunately at the end of 2016 his driving licence was taken away, he started rapidly declining and got made homeless... giving us no choice but to move him to a care home. He is the youngest in there by 20 years which is just horrible. I also have never met anyone my age who has a parent suffering from this disease so completely relate to you. The thing I hear the most when I tell people around me is "oh yeah... my nan/grandad had that! I know exactly what you're going through!" which I'm sure as you know is the most frustrating thing they could possibly say... As not only are we dealing with this at such a young age but because it is our actual parent, the stress and pressure and emotional damage that it leaves you with is on another level. I really feel like that this defines my life and really stops me from living like a normal 17 year old. Just wanted to let you know that you are not alone! Thank you for starting this thread x

 

[karaokePete]

Hi @Em17... I am also 17 and have a dad with early onset dementia. He is 66 and was diagnosed when I was about 13. He was living on his own but unfortunately at the end of 2016 his driving licence was taken away, he started rapidly declining and got made homeless... giving us no choice but to move him to a care home. He is the youngest in there by 20 years which is just horrible. I also have never met anyone my age who has a parent suffering from this disease so completely relate to you. The thing I hear the most when I tell people around me is "oh yeah... my nan/grandad had that! I know exactly what you're going through!" which I'm sure as you know is the most frustrating thing they could possibly say... As not only are we dealing with this at such a young age but because it is our actual parent, the stress and pressure and emotional damage that it leaves you with is on another level. I really feel like that this defines my life and really stops me from living like a normal 17 year old. Just wanted to let you know that you are not alone! Thank you for starting this thread x

Hello @christelle, welcome to TP. I hope you find this a friendly and supportive place.
It is very true that having a parent diagnosed at such a young age will be difficult.
Do have a good look around the site as there is a lot of information available in the threads, Factsheets etc., and don't be afraid to start your own thread if you have any questions.
Should you ever want to talk directly to someone about an issue the help line is available and the details are;-
National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.

Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

 

[Dj96]

Welcome to TP @Dj96
Do you get some support from your Uni?

Yes I am. Thank you

 

[cath1124]

Hi @Em17 and @cath1124 I couldn't relate more to you guys. I'm 21 years old and in my third year of University. My mum was diagnosed with dementia when I was doing my A levels. I remember the time it was awful. Its so hard to find friends or young people that even understand. Whats even worse is that people tend to focus on the patient so much that they forget that dementia affects the whole family. I attend every single appointment with my mum and yet nobody once has asked me about how I'm coping or managing. Yes I feel guilty for not being there enough for my mum but going home doesn't feel any better. My dad helps a lot too but he's also quite unwell so I understand how its such a worry that its all going to end up being me managing it all. My siblings are also much older than me and are not willing to get involved in the care of my mum so I know how it feels to be left alone. I definitely know how it feels when you miss the old them. I don't think I've come to accept the diagnosis this many years later but I think its a process. I'm always trying to jump ahead but seriously it doesn't help. I'm so scared too of the unknown but I'm trying to stop myself from doing that and instead trying to live every day as it comes. If any of you ever needs someone to talk to there are so many lovely people on TP. I think it would be great if there was a platform for young people with parents suffering from dementia could meet or talk. xxx

hey @christelle , @Dj96 and @Em17 all of your posts have comforted me so much. Its nice to know we're not alone and although all of our situations are a little different we share common feelings. If any of you want to talk I'd be happy to listen and thanks so much for posting on this. xx

 

[christelle]

hey @christelle , @Dj96 and @Em17 all of your posts have comforted me so much. Its nice to know we're not alone and although all of our situations are a little different we share common feelings. If any of you want to talk I'd be happy to listen and thanks so much for posting on this. xx

Yes definitely. I often convince myself that I am the only one going through this as it is such a rare situation so it really helps to know you guys are going through this journey too. If you ever want to talk too I am always here x

 

[Dj96]

hey @christelle , @Dj96 and @Em17 all of your posts have comforted me so much. Its nice to know we're not alone and although all of our situations are a little different we share common feelings. If any of you want to talk I'd be happy to listen and thanks so much for posting on this. xx

Yes couldn't have put it any better than @christelle. We can definitely keep in touch and talk about it. Always happy to share experiences and just talk, even if its to rant because we need that sometimes xx