Looking for young people whose parent(s) have dementia and how best to cope

[AaronH]

I am new to this and this is my first post so I’m not sure what to expect.

I am looking for young people that have had to care/witness their loved ones/parents go through dementia. My mum was diagnosed when I was 18 and she was 54 (ish), although, she had been showing signs of illness for a few years before her diagnosis.

I am now 23 and have never really spoken to anyone about this, I’m trying to find some sort of group for young adults to talk about their experiences as I am really starting to struggle nowadays. My relationship with my mum was wonderful and even though she’s been ill for years I’m finding it harder and harder to cope without her.

If anyone would like to talk about their experiences or to vent or anything please just say, I’ve not had much support since mum got poorly but I really think I’m starting to need it.

Thanks,
Aaron

 

[Cat27]

Welcome to TP@AaronH

Have you seen this thread? https://forum.alzheimers.org.uk/thr...-my-dad-having-early-onset-alzheimers.107888/

Please keep posting as you’ll get lots of support here.

 

[karaokePete]

Hello @AaronH, welcome to the forum from me too.

My wife was also diagnosed as early onset, although I am not as young as you.

From my perspective dementia has completely changed a lot of our retirement plans so it can be tough from the emotional point of view. Having said that, this is a great place for mutual support so I hope you keep posting.

 

[Shen Martine]

Hi @AaronH my mom was diagnosed with FTD this august at the age of 52. I'm 26 and finding it really hard to adjust to the changes which seem to be happening much quicker than I expected. It's really tough even talking to family and friends about how I feel sometimes, which is why I joined this site. I don't really have many answers but happy to be a sounding board.

 

[Lindy50]

Hello @AaronH and welcome to TP

I’m so sorry you’ve received little support up to now - we all need it, I’m afraid. I’m glad you’ve found this site as people are very supportive as well as knowledgeable, and I know that some members are your age or just a bit older.

I’m in my 60’s myself, so not really what you’re looking for, but I just wanted to say welcome

If you have any questions, ask away, or just read or post as you want.
All the best
Lindy xx

 

[JessL87]

I am new to this and this is my first post so I’m not sure what to expect.

I am looking for young people that have had to care/witness their loved ones/parents go through dementia. My mum was diagnosed when I was 18 and she was 54 (ish), although, she had been showing signs of illness for a few years before her diagnosis.

I am now 23 and have never really spoken to anyone about this, I’m trying to find some sort of group for young adults to talk about their experiences as I am really starting to struggle nowadays. My relationship with my mum was wonderful and even though she’s been ill for years I’m finding it harder and harder to cope without her.

If anyone would like to talk about their experiences or to vent or anything please just say, I’ve not had much support since mum got poorly but I really think I’m starting to need it.

Thanks,
Aaron

Hi Aaron,
My mum has early onset Alzheimer's and was diagnosed last year at the age of 53. I'm 31 and we've never had direct experience with anyone with Alzheimer's before so I'm kind of doing this blind. Lots of reading and asking questions.
Xx

 

[Jolean]

hello my husband went to the doctors at the age of 58 and was diagnosed at the age of 59 with moderate Alzheimer's I think he had it well before that age and the specialist also confirmed this, in fact I would say from the age of 54 if not younger (he is now 61 - 62 in June 2019) . Since his diagnosis 3/4 years ago we started to plan to make our lives easier, especially his, giving him less stress and more time for himself in fact for both of us. He goes the gym everyday which he loves, we walk and have very active life . He still does all the gardening and looks after his own hygiene and washes up and sometimes hoovers and cleans, in fact he does what he wants to do. In fact if you met him you would not think there was anything wrong with him. But of course I know and he knows his memory is not good. I support him when he needs to go to arrange appointments or when he needs to discuss things in detail as he said sometimes he forgets the words and can be embarrassing. We go out for regular walks and also for meals, we have taken a couple of trips this year abroad and our next one is to Mexico over the Christmas period for one month. So my answer is don't judge everyone the same, I thought once he received the diagnosis that was it, but far from the truth. We have come to terms with things but we have not put our lives on hold. We talk about it and discuss the future best we can. But like I said we have had and still having a great life. Most probably one day things will not be as they are now, but I am or should I say we are living for today and we will cross the hurdles if and when they come. So enjoy all your valuable time together as much as you can and try to see her as much as possible.
Plan - arrange - and enjoy xxx
good luck

 

[Ffi]

Hi Aaron,
I've not posted on here before either. I'm almost 20 & my dad was diagnosed last March aged 60, although he's probably had it for a few years now. I know what you mean about lack of support, especially for young onset and being "young" at the same time.

 

[Cat27]

Welcome to TP @Ffi
I’m sorry to read about your Dad. You’ll get support here if you keep posting.

 

[cumbria35]

hello my husband went to the doctors at the age of 58 and was diagnosed at the age of 59 with moderate Alzheimer's I think he had it well before that age and the specialist also confirmed this, in fact I would say from the age of 54 if not younger (he is now 61 - 62 in June 2019) . Since his diagnosis 3/4 years ago we started to plan to make our lives easier, especially his, giving him less stress and more time for himself in fact for both of us. He goes the gym everyday which he loves, we walk and have very active life . He still does all the gardening and looks after his own hygiene and washes up and sometimes hoovers and cleans, in fact he does what he wants to do. In fact if you met him you would not think there was anything wrong with him. But of course I know and he knows his memory is not good. I support him when he needs to go to arrange appointments or when he needs to discuss things in detail as he said sometimes he forgets the words and can be embarrassing. We go out for regular walks and also for meals, we have taken a couple of trips this year abroad and our next one is to Mexico over the Christmas period for one month. So my answer is don't judge everyone the same, I thought once he received the diagnosis that was it, but far from the truth. We have come to terms with things but we have not put our lives on hold. We talk about it and discuss the future best we can. But like I said we have had and still having a great life. Most probably one day things will not be as they are now, but I am or should I say we are living for today and we will cross the hurdles if and when they come. So enjoy all your valuable time together as much as you can and try to see her as much as possible.
Plan - arrange - and enjoy xxx
good luck

My husband is 80 years old and was diagnosed five years ago but probably should have had tests 12 months earlier. We have been doing things together but gradually he has slowed down and gets tired more easily. So glad we did things whilst we could although I do miss making plans to travel and many plans went out of the window because of previous ailments so disappointments at times. We also used to walk every weekend but no more so pleased you are doing what you can whilst you can. The worst thing is that I am fairly fit and miss the walking so much as he can’t be left for more than a couple of hours and doesn’t like me going out alone.

 

[rose1152]

hi @AaronH, @Shen Martine ,@JessL87 and @Ffi Plus anyone else I’ve missed!

I’ve literally stumbled back into this forum tonight as I’m caring for my mum this weekend and have just had a fairly good night turn into a disasterous evening. I have been looking for younger carers to chat to for such a long time now. I’m 27 and mum is 67, diagnosed 7 years ago with Alzheimer’s. It’s not at all to take away from the difficulties for people from different generations, but I never ever thought I would have to watch my mum go through this whilst I was just getting my own life going!

Would be so lovely to chat to anyone that wants to, I’m also relatively new (posted once before).

Have a lovely restful evening!

 

[JessL87]

hi @AaronH, @Shen Martine ,@JessL87 and @Ffi Plus anyone else I’ve missed!

I’ve literally stumbled back into this forum tonight as I’m caring for my mum this weekend and have just had a fairly good night turn into a disasterous evening. I have been looking for younger carers to chat to for such a long time now. I’m 27 and mum is 67, diagnosed 7 years ago with Alzheimer’s. It’s not at all to take away from the difficulties for people from different generations, but I never ever thought I would have to watch my mum go through this whilst I was just getting my own life going!

Would be so lovely to chat to anyone that wants to, I’m also relatively new (posted once before).

Have a lovely restful evening!

Hi @rose1152
I totally understand what you mean when you say you never expect to see your mum go through this!! Its such an awful and heartbreaking thing to witness isn't it xx

 

[rose1152]

Hi @rose1152
I totally understand what you mean when you say you never expect to see your mum go through this!! Its such an awful and heartbreaking thing to witness isn't it xx

It’s mad isn’t it!

Have you found any support yourself amongst all this?
Xx

 

[JessL87]

It’s mad isn’t it!

Have you found any support yourself amongst all this?
Xx

No not really. There is a "carers hub" at my doctors but I've never been. Keep meaning to go but just haven't yet. How about you?

 

[rose1152]

No not really. There is a "carers hub" at my doctors but I've never been. Keep meaning to go but just haven't yet. How about you?

Hi jess,

No I haven’t been told about anything nearby. There are of course dementia cafes but they are all in the day time when I’m at work. I work full time and it is so hard trying to juggle caring, working and planning my own life. Oh the joys!

 

[Ruth1974]

I am new to this and this is my first post so I’m not sure what to expect.

I am looking for young people that have had to care/witness their loved ones/parents go through dementia. My mum was diagnosed when I was 18 and she was 54 (ish), although, she had been showing signs of illness for a few years before her diagnosis.

I am now 23 and have never really spoken to anyone about this, I’m trying to find some sort of group for young adults to talk about their experiences as I am really starting to struggle nowadays. My relationship with my mum was wonderful and even though she’s been ill for years I’m finding it harder and harder to cope without her.

If anyone would like to talk about their experiences or to vent or anything please just say, I’ve not had much support since mum got poorly but I really think I’m starting to need it.

Thanks,
Aaron

Hi, my kids are 12 and 15. Their dad was diagnosed 2 years ago but had been showing signs and withdrawing from family life for years before that. I dont know how this will pan out in the future for them but just now they are fine. They've been offered Young Carers but are not interested.

Maybe counselling would help you to unravel some of this? A person centred counsellor, maybe cruise bereavement counselling because even if she is still alive, the reality is that you have lost your mum and that is never a small thing.

From what i have seen, each case is unique and peoples experience differs so much that you cant ever find someone who knows exactly what its like.

When my o/h was first diagnosed i told the kids that any emotion is perfectly fine. They will be angry, sad, happy, frustrated, frightened....i suppose that rule must apply even after he dies.

Its important to look after yourself and get the support you really need. My own mum suffered severe brain damage when i was 8 so in effect i lost my mum but her physical presence survived until i was about 35! I also found it difficult as a young adult and again occasionally at different stages (when you have your first child and your mum isnt there for example).

You are doing absolutely the right thing to seek support, you have a right to feel ok and need to look after yourself.

 

[Janius85]

I am new to this and this is my first post so I’m not sure what to expect.

I am looking for young people that have had to care/witness their loved ones/parents go through dementia. My mum was diagnosed when I was 18 and she was 54 (ish), although, she had been showing signs of illness for a few years before her diagnosis.

I am now 23 and have never really spoken to anyone about this, I’m trying to find some sort of group for young adults to talk about their experiences as I am really starting to struggle nowadays. My relationship with my mum was wonderful and even though she’s been ill for years I’m finding it harder and harder to cope without her.

If anyone would like to talk about their experiences or to vent or anything please just say, I’ve not had much support since mum got poorly but I really think I’m starting to need it.

Thanks,
Aaron

Hi Aaron my mum has recently been diagnosed with both Alzheimer's and vascular dementia and she is only 56 years of age. I feel that it is progressing at a fast rate though. Mum is due to see the nueroligist in March this year. It hitbme like a brick the diagnosis so can truelly sympathise with you. Its the unknown isn't it and the emotional rollercoaster. Please feel free to write back and thoughts with you.

 

[Janius85]

Hi Aaron my mum has recently been diagnosed with both Alzheimer's and vascular dementia and she is only 56 years of age. I feel that it is progressing at a fast rate though. Mum is due to see the neurologist in March this year. It hit me like a brick the diagnosis so can truelly sympathise with you. Its the unknown isn't it and the emotional rollercoaster. Please feel free to write back and thoughts with you.

I just feel that it would be great if I could talk to people that can relate to what we as a family are all going through.Many thanks

 

[serenedreme]

Hi my mum is 68 and just been diagnosed in last couple of weeks. I’m 35 years old so not as young as some of the people on here, but feel young to be seeing my beautiful mum deteriorate in front of my eyes. It’s devastating so relate to anyone else struggling with the loss you are faced with watching a loved one go through dementia. Would be great to meet other people in similar situations. Xx

 

[theartmonster]

Hiya,

I totally feel like this forum is a godsend! I’m 28, I stepped in to be my Nan’s carer at the start of this year - my grandad isn’t coping or handling it well.
I know she’s not my parent but I live with my grandparents and care for her on a daily basis so it feels like caring for a parent - except more like caring for a toddler these days!

Do you all make sure you get a day/morning/afternoon off regularly? How do you communicate with the rest of your family for practical support?