Resources for Younger Carers (Millennial & Gen Z)

[Carerin20s]

Hi all,


So since joining Talking Point last year I've posted & kept an eye out for any threads discussing those who become a carer for a PWD as a younger adult. By that, I'm thinking about people between the ages of 25 and 40.

I'm not trying to exclude anyone from the 'younger' age bracket, I'm just particularly thinking about the time of life when people are often independently building their own careers, starting a family, buying a home, moving away to different areas, studying, travelling, etc.

I know I certainly found that when caring for my Mum took precedence, I neglected a lot of my own ambitions and consequently felt isolated from people my age with no understanding of caring responsibilities.

I'm still searching for any kind of resources aimed specifically at a younger carers. I have tried contacting various databases to see if any kind of designated support aimed 25-40 already exists but I haven't found anything.

Honestly, I'm getting to thinking whether I should set up something myself.

If you're a younger carer, would support more age specific help with your caring? Or does the age factor not particularly play into your own experience? Would practical advice specifically about work/caring responsibilities be useful? Carer mental wellbeing advice?


Keen to know what you think.

 

[Sarahkb]

Hi while I’m not a young carer as such (I am 49) I care for my husband age 50 who was diagnosed with Frontotemporal dementia at 48. I also am mum to two young children age 7 and 11 so support them as extremely young carers to a daddy who has dementia.
I have found it almost impossible to find support for myself as a carer as the groups, memory cafes, etc are wonderful but just trigger lots and of painful emotions for me and just don’t help but actually make me feel worse. Everyone is at least 20 years older and their children are adults in their own right. Trying to find support for my children with a dad not grandad with this awful disease has been incredibly difficult too.
I know this isn’t exactly what you are asking but I just wanted to say I get exactly where you are coming from. It’s very hard.

 

[Cap'n Grimm]

I started caring for mum full time when I was 37. I’m over your 40 threshold now, but still caring.. we go to our local dementia group snd a couple of other groups. It’s great. But a consequence of this is most of my friends now tend to be in their 70s and 80s. It would have been nice to be able to meet with people in similar circumstances around the same age.

 

[Cap'n Grimm]

I would also add that forming personal relationships has been a challenge due to people not understanding the commitment and responsibility of caring. I can’t just drop everything and have a weekend away or go on holiday. One person I got involved with was actually a carer and even they got fed up with me. So what hope is there?

in a nutshell people don’t wanna hang around when they realise they’re not going to be a priority in your life. At least not for a while.

 

[Carerin20s]

Hi @Sarahkb

Thank you so much for your reply. I'm sorry to hear about your husband's diagnosis. That is a tragically young age to be diagnosed and I can only imagine how upsetting it must be for you and especially your children when they are still so small as well.

I can completely understand how you feel about being 20 years younger than most people in the room. When we were looking at care homes for my Mum, one care worker assessing her asked if my Mum liked listening to 'war time classics'. My Mum was born in the 50s. I got so dismayed that he couldn't see the person that I still remember & think of her as.

I really hope you and your family are able to find some solace together as you go. Connection and sharing is a huge step.

 

[Sarahkb]

Thank you. There is certainly a lack of appropriate provision for people who really don’t relate to war time songs and the people caring for them!

 

[Carerin20s]

Hey @Cap'n Grimm

Thanks for your comment. I definitely do find that I can spend a lot of time in older company when I'm getting stuck in with caring duties. I know when I'm in a out and about caring, I'm always bringing the average age right down.

And that's fine generally, only I agree it can take a toll on your own relationships. I definitely let my social life slide. Actually it's got to the point that I often don't tell acquaintances about being a carer because nine times out of ten, they don't know how to respond, I feel like I've overshared, and it's all a bit awkward. I'm determined not to give up though!

 

[Rachael03]

Hey @Cap'n Grimm

Thanks for your comment. I definitely do find that I can spend a lot of time in older company when I'm getting stuck in with caring duties. I know when I'm in a out and about caring, I'm always bringing the average age right down.

And that's fine generally, only I agree it can take a toll on your own relationships. I definitely let my social life slide. Actually it's got to the point that I often don't tell acquaintances about being a carer because nine times out of ten, they don't know how to respond, I feel like I've overshared, and it's all a bit awkward. I'm determined not to give up though!

Hi @Carerin20s

Thanks for starting this thread..a lot of what you said has resonated with me. I'm 33, recently married and providing lots of care and support to my mum....I'm not a "full time carer" and so lucky I have 4 brothers who are also making the same sacrifices but they are all older than me, aging 42-52, so they are even in a different chapter of life to me. I even sometimes resent that when they were my age they weren't having to deal with the things I am!

I am finding it a bit of an isolating experience, but I think that would be the case regardless of age. I find myself getting short with people at work and resentful of my long time friends who are living a carefree life. I understand filtering out information and not even mentioning certain things....if someone asks "what did you get up to at the weekend?" In passing, they don't want to hear the honest answer of the 150 caring duties your performed! They want to hear a filtered version of the "old me" and I don't blame them as our friendships and relationships were built around that version of myself.

I do think there needs to be education and support about the image of carers in general, not just carers for dementia..there are so many people at a young stage in life with responsibilities that you wouldnt expect.

It is comforting to know there are other people facing this at a similar chapter of life...but i wish you didnt have to!

 

[Weasell]

I am old !
but went though my caring years gaining friends rather than losing them.

A bit like the compassionate communication, that is tailored to dementia, I think the young carers need a little help with communication if they wish to keep or gain friends during caring years.

I quickly realised that if I talked about my caring duties it interested no one, and if I talking about my future it dragged everyone down.
Younger people often want the luxury of talking about exactly what pops into their head. I think some guidance on conversation would help them. This was my training course.

a bore takes about themselves
a gossips talks about others
an interesting conversationist talks about you

I am not a natural at remembering anything about my friends ( big dental appointment they are scared about.) I have had to learn to get Siri to message me the day before so I can be the friend I should be and wish them luck. Then, in the way friendship works they call me to let me know how it went.
In the old days I never troubled myself to remember anything about anyone, but actually trained myself to achieve it.

( I know a gossips talks about others, but I must confess I have failed to cure my appetite for that!!!!)

 

[Rachael03]

I am old !
but went though my caring years gaining friends rather than losing them.

A bit like the compassionate communication, that is tailored to dementia, I think the young carers need a little help with communication if they wish to keep or gain friends during caring years.

I quickly realised that if I talked about my caring duties it interested no one, and if I talking about my future it dragged everyone down.
Younger people often want the luxury of talking about exactly what pops into their head. I think some guidance on conversation would help them. This was my training course.

a bore takes about themselves
a gossips talks about others
an interesting conversationist talks about you

I am not a natural at remembering anything about my friends ( big dental appointment they are scared about.) I have had to learn to get Siri to message me the day before so I can be the friend I should be and wish them luck. Then, in the way friendship works they call me to let me know how it went.
In the old days I never troubled myself to remember anything about anyone, but actually trained myself to achieve it.

( I know a gossips talks about others, but I must confess I have failed to cure my appetite for that!!!!)

Some good advice there...the saying "think before you speak comes to mind".

I would agree no good comes from dwelling or talking non stop on the realities of caring and fears for the future, but I do think there's a balance where we should be able to speak candidly about it as well, without the fear of making others too uncomfortable. But I know people don't mean to be ill intended by doing this! My best friends husband lost his mother to early onset in his late 20s, it was a horrible journey for him and his family. I could never bring myself to ask him about her while his mother was alive and living with dementia, I just didn't know what to say or where to start. I hope that by living this experience I would do better next time if someone I know has to face this journey with a loved one.

Wishing you all a great day

 

[Ameliaos]

Hi @Carerin20s

Thanks for starting this thread..a lot of what you said has resonated with me. I'm 33, recently married and providing lots of care and support to my mum....I'm not a "full time carer" and so lucky I have 4 brothers who are also making the same sacrifices but they are all older than me, aging 42-52, so they are even in a different chapter of life to me. I even sometimes resent that when they were my age they weren't having to deal with the things I am!

I am finding it a bit of an isolating experience, but I think that would be the case regardless of age. I find myself getting short with people at work and resentful of my long time friends who are living a carefree life. I understand filtering out information and not even mentioning certain things....if someone asks "what did you get up to at the weekend?" In passing, they don't want to hear the honest answer of the 150 caring duties your performed! They want to hear a filtered version of the "old me" and I don't blame them as our friendships and relationships were built around that version of myself.

I do think there needs to be education and support about the image of carers in general, not just carers for dementia..there are so many people at a young stage in life with responsibilities that you wouldnt expect.

It is comforting to know there are other people facing this at a similar chapter of life...but i wish you didnt have to!

Hi, hope you don’t mind me hopping in - I’m 28 and my dad has dementia - my mum is fantastic and lives near him, but i relate to so much of what you’ve said.. I travel 2 hour round trip twice a week to see him and feel so much younger than anyone else. My dad had a stroke earlier this year, before that he had Alzheimer’s but fairly independent still, and now he’s not able to walk, doesn’t know who I am, lives in a home etc.. couldn’t agree more on people asking how your weekend was. I don’t know what to say to most people! How’s your summer been? ‘Terrible my dad was in a coma for 4 weeks and now is entirely disabled by Alzheimer’s and everything feels terrible’ lol

 

[Rachael03]

Hi @Ameliaos and thanks for taking time to reply to my post. Sorry you are having to watch your dad suffer like this too.

It is very hard to answer those simple questions now when the honest answer is not what people want to hear. I know this doesn't work for everyone but I've started a journal as another place to rant honestly...it means once I've cleared my brain of all the heavy things I can still find some space to be myself again. I think its important to do that too if you can. Some people have started their own chains on this forum to act as a journal for themselves as well, and anyone who reads it will relate to what you're going through.

But reading what you've been through with your dad the last few months, it's no wonder you don't have any sml talk to make at rhe moment.. don't be hard on yourself, it's a lot you are going through and processing

Keep posting here xx

 

[sophief]

Ok, I'm 41, so technically not in the young bracket. I am also not a sole caregiver, but help my dad, who is the caregiver of my mom. I have several children, the youngest being 2 and 5, so that in itself is a busy time. I am trying, like you, to figure out how to juggle responsibilities and also do the things I would normally do! I am new to this, and have no idea how to do the right thing, care for my people, and be able to be there for everyone!

 

[SeaSwallow]

Hello @sophief and welcome to the Dementia Support Forum. It is difficult being in the ‘sandwich’ generation, where you have children but also feel responsible for an adult parent.
I know that it must be difficult but your main responsibility must always be to your children as they are only young once.
I think from the terms that you have used that you are not based in the U.K. and this is a U.K. based forum. Normally I would suggest contacting social services to see what help they could give your dad to help him cope with his caring responsibilities, would you be able to do something like that. Please keep posting and let us know how you are getting on or even just to talk about how you feel. You will get lots of support here.

 

[denCharlotte]

Hi there,
This is my first time messaging on talking point, mostly because I feel too young to relate to most stories about grandparents with dementia. Until I found your post… I myself am 27 and have a younger sister of 24. Our mum three months ago at the age of 61 got diagnosed with early onset Alzheimer’s. I wouldn’t quite class us as carers luckily she’s still very much herself although obviously we can see the symptoms much more clearly. Lucky dad is there to lend most of the helping hands.
We’ve been looking for support groups for people of our age but still haven't come across anything close.

It feels like In school (most of our lives so far) we’ve been trained to look into the future … where do you see yourself in 5 years time? Suddenly that’s not so much of a fun thing to do.
We’re both building our careers, I’ve recently moved out and we are both unmarried and have no kids. Feels like our lives haven’t quite started yet…

We found that alot of friends and some family members just don’t get it.

If you do start a group I know I’d be really interested in joining! Talking to people our own age who really truly understand this situation would be amazing but it can feel very isolating when other support groups are aimed at a different age group with completely different perspectives.

Thank you for your post! It feels nice to know there’s other’s with similar stories to ours.

Hi all,


So since joining Talking Point last year I've posted & kept an eye out for any threads discussing those who become a carer for a PWD as a younger adult. By that, I'm thinking about people between the ages of 25 and 40.

I'm not trying to exclude anyone from the 'younger' age bracket, I'm just particularly thinking about the time of life when people are often independently building their own careers, starting a family, buying a home, moving away to different areas, studying, travelling, etc.

I know I certainly found that when caring for my Mum took precedence, I neglected a lot of my own ambitions and consequently felt isolated from people my age with no understanding of caring responsibilities.

I'm still searching for any kind of resources aimed specifically at a younger carers. I have tried contacting various databases to see if any kind of designated support aimed 25-40 already exists but I haven't found anything.

Honestly, I'm getting to thinking whether I should set up something myself.

If you're a younger carer, would support more age specific help with your caring? Or does the age factor not particularly play into your own experience? Would practical advice specifically about work/caring responsibilities be useful? Carer mental wellbeing advice?


Keen to know what you think.

 

[canary]

Hello @denCharlotte and welcome to the forum

I understand what you are saying about feeling too young for this forum. I am about your mums age and its my OH (who is only a couple of years older than me) who has problems and I sometimes feel too young to be dealing with it too! We have two children, who are only a bit older than you although they both have young children of their own. There are other members on here in their early 60s too. We can help explain what it is like for your parents and I can see how it is affecting my children. We can also offer practical advice on how to deal with different problems and we all understand exactly what it is like to cope with dementia. The age difference between me and some other members, who are looking after spouses, but are in the generation above me, doesnt usually seem to be a problem