I'm in my 20's and my mum has dementia

[Lyla_W]

Hi everyone,
I'm new to all of this. I didn't even know this site existed until I finally had the guts to google "young people who have a parent with dementia". I'm finding everything hard and I just feel like I have a hundred people around who can support me, but no one understands what it's like to have a mum in their early 50's with dementia.
I live in London and my parents live 3 hours away in the countryside. It's killing me. My dad is a hero and he loves my mum so much. I just feel so guilty I live far away but I know my mum (I guess what my mum would have said) is to do what I love. It's hard to explain.
She's just so ill now, it's like she's turned into a child.
My dad is amazing and I just feel sorry for him. It's horrible feeling sorry for your dad...
Is anyone else here going through something similar?
I would love to talk to someone who is... Xx

 

[sinkhole]

Hello Lyla
You are among friends here.
Please share your experiences as we've all got plenty to talk about!
SH

 

[Kevinl]

Other side of the coin for me Lyla, I'm the Dad with a wife with AZ and all 3 kids at least 150 miles away (2 in their 20's one just turned 30). It's been like this for 5 years with my wife and I went through all of this few years back with my mum too.
I sometime wonder what my kids think and what they say when they're asked about their parents, why we never attended their graduations, why they never get asked to our house?
My advise to my kids is "get on with your life" I had children to be their own people not future carers for us, that wasn't the plan.
As long as he's dealing with everything and you will have to look for the signs and he's happy with the situation (well as happy as you can be with a wonky wife) then just do what you can do and make sure he knows that you're there for him anytime he needs you, what more could a parent want.
K

 

[Lyla_W]

Hello Lyla
You are among friends here.
Please share your experiences as we've all got plenty to talk about!
SH

That's so lovely. Thank you, I think that is what I really needed to hear! I'm really happy I found this forum I think it will help a lot x

 

[Lyla_W]

Other side of the coin for me Lyla, I'm the Dad with a wife with AZ and all 3 kids at least 150 miles away (2 in their 20's one just turned 30). It's been like this for 5 years with my wife and I went through all of this few years back with my mum too.
I sometime wonder what my kids think and what they say when they're asked about their parents, why we never attended their graduations, why they never get asked to our house?
My advise to my kids is "get on with your life" I had children to be their own people not future carers for us, that wasn't the plan.
As long as he's dealing with everything and you will have to look for the signs and he's happy with the situation (well as happy as you can be with a wonky wife) then just do what you can do and make sure he knows that you're there for him anytime he needs you, what more could a parent want.
K

Hi, I've felt almost a sense of relief reading your message this morning… Finally I know there are people out there who are going through what I am. Although I know it's heartbreaking, and I wouldn't wish this disease on anyone else…
It's really nice (is that the word?) to hear this from a fathers point of view who is going through the same. I'm so close to my dad. He's my best friend. And it just kills me knowing that everything he planned with my mum isn't happening. She can't even visit me in London because the travel is too stressful, and he won't leave her… Even though I know he'd love to spend the weekend with me doing what we both love in London, he just won't leave her. She gets too anxious when he leaves her… Is that the same with your wife if you don't mind me asking? Is there a lot of anxiety?
It's uplifting (again not sure of the right word to use) to hear you say you had children to be their own people and not future carers for us. That's exactly what my dad keeps saying…
I've been trying to look for a group of some sort where people in there 20's can talk if they have a parent with dementia… But I feel a bit useless doing so.
Thank you for your message. I'm happy I have found this forum now, I already feel a slight burden off of my shoulders xx

 

[Pickles53]

Lyla I would just like to add that as a parent I also agree totally with what Kevini says. Having lost both my mum and MIL to dementia I will make sure that our daughter knows that I want her to live her life whatever happens to us. Like everyone else I hope to stay well enough to look after myself, but we don't all have that choice. I would want her to make sure I am safe and well-cared for, but I will never make her promise not to 'put me in a home'. I've read too many heartbreaking posts from exhausted carers on here to want our daughter to become one of them.

The best thing she can do for me is to live a great life with her husband and family and to fulfil her dreams.

 

[Grumpy Gramps]

Look after Dad especially, He will need you.


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[Lyla_W]

Lyla I would just like to add that as a parent I also agree totally with what Kevini says. Having lost both my mum and MIL to dementia I will make sure that our daughter knows that I want her to live her life whatever happens to us. Like everyone else I hope to stay well enough to look after myself, but we don't all have that choice. I would want her to make sure I am safe and well-cared for, but I will never make her promise not to 'put me in a home'. I've read too many heartbreaking posts from exhausted carers on here to want our daughter to become one of them.

The best thing she can do for me is to live a great life with her husband and family and to fulfil her dreams.

Gosh, thank you for sharing… Also, what you said about having your daughter live her life and fulfil her dreams… That's what my dad truly wishes and I know my mum does too. It's just hard to really focus on my life now.
But thank you, it means so much x

 

[Lyla_W]

Look after Dad especially, He will need you.


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I will always x

 

[Kilgara]

I am 22 and my mum has vascular dementia. I am in the same situation with my mum living 2 hours away from me and I don't drive. I often wonder how my family are coping and all the stress it puts on them. My dad and two younger sisters live with her at home and it's hard not being able to be the all the time.
You have come to the right place for support we are all here for you and there's always people to share your worries and concerns with.
PM me if you ever need to talk

Xx


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[Miss Merlot]

Hi Lyla,

I couldn't pass this thread by and not comment.

I'm really sorry to hear about your dad. I have been caring for my MIL since my late twenties and am 33 now - I've found that carers in our age range are a very rare breed, and I know it can be very isolating when all your friends are still about parties, babies, careers etc, and you are all about Social Services assessments, compassionate communication and (if you're anything like me!) going silently mad...

No pressure at all, but me and a fellow 30-something caring for her MIL with dementia have something of a little support group of two going - we meet in central London every few weeks, have a drink and bite, and share war wounds... Both of us find it really helpful to just do something "normal" but also be able to share with someone who "gets" it and will not judge you for anything that you say, without having to go in for the whole formal support group setting.

You'd be more than welcome to join our little circle anytime - just send me a PM if you're interested

MM x

 

[Lyla_W]

I would love to join you - what a lovely message. I shall message you now to talk further. Thank you so much. All of these comments are just such a relief for me I can't even tell you. Thank you xx

 

[Miss Merlot]

Thanks Lyla - it's a shame we'll meet under these circumstances, but we'd be pleased to see you...

 

[Lyla_W]

Kilgara, thank you for sharing. I can't begin to explain how grateful I am for these replies.
Please let's keep in touch if possible x

 

[Kilgara]

It's okay. I understand what it feels like and how lonely it can be. Il always be on TP


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[Kevinl]

Well Lyla and Kilgara
Even though you're not able to be there physically there is quite a lot you can do to help. We have 3 children; one at Imperial College London who hopefully will become Doctor Daughter this summer, one lives and works in Bristol and the third doing a PHD at Newcastle so all at least 150 miles from us in Manchester.
It's in a lot of ways stopped being a dad/daughter/sons relationship and become more Team Mum.
I want them to live their lives without worrying about us but at the same time I appreciate their input. The best thing you could do would be get your Dads to join here (only 16% of TP members are men) and to learn as much as possible yourselves so you can offer some sound suggestions and advice.
Are they getting all the benefits they're entitled to, if there's just the 2 of them do they get a council tax reduction, do they get DLA or PIP or mobility allowance?
There literally is a world of things you can do to help from a distance specially if they're not particularly computer literate and you are, you can do something in minutes that may take them endless hours without computer skills.
I could go on for ages but I won't.
K

 

[stacee]

Hello lyla I'm 21 mum 44. Xx

 

[always_hopeful]

my mum was diagnosed when she was 51 and I was 26 not an easy situation but you are among friends here, this forum helped me a lot

 

[MLM]

Me and my partner are 25/26 and his dad has early onset dementia age 55 (diagnosed last year). He's just had to take early retirement as he cant drive any more and that was his job. Currently hoping to find something to fill his time with that is social for his age group and understanding of his condition. He struggles mostly with language and that has impacted on his confidence to socialise.

Michelle


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[justgettingby]

Hi Lyla,

My mum has early-onset Alzheimer's and she was diagnosed at 57, three years ago, when I was 21. It can feel horribly lonely in our position and while I can't say it gets any easier, everyone on this forum is supportive, kind and understanding, in my experience. It is possible to enjoy life to some extent, even though it is more difficult and you have responsibilities most people do not at this age. Just try to make the most of time with your mum and cherish the good memories you have of her. I feel terribly sorry for my dad too, the burden on him is huge even with my sister and I helping. All you can do is be there for them as much as possible without running yourself into the ground. All the best.



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