Young carers, any out there?

[EcoGeek]

I'm not technically a carer or a young carer but I have been given a lot of the responsibility of the organisation of care for my 53 year old mother who was recently diagnosed with FTD.

I'm calling out for anyone who is close to my age to talk to I'm about to turn 20 next week

It breaks my heart when I think that my mum probably won't recognise me by my next birthday and likely won't live to see me turn 25!

And I appreciate it is hard for people's whose spouse is suffering from one of these awful conditions and they do have my sympathy but when i read this sort of quote 'he/she is only 60 we are too young for this to happen to us' It makes me want to respond with 'how do you think I feel?'

I hope this doesn't offend anyone I just needed to vent

Any other young folks on here please let me know of your presence

 

[jenniferpa]

I'm not a younger carer (I'm actually the same age as your mother) but I wanted to welcome you to the board. Life has dealt you and your mother an awful hand and anything we can do to help you just ask.

Take care

 

[Helen33]

Hello EcoGreek

It breaks my heart when I think that my mum probably won't recognise me by my next birthday and likely won't live to see me turn 25!

Welcome to Talking Point and I hope that you find the support and help that you are needing.

I am a carer, but not a young, carer. My husband has FTD and I just wanted to put your mind at rest by saying that it is highly possible that your mum could recognise you for many years and may live way beyond your 25th birthday! Of course this is not a guarantee but it is highly possible. My husband is 78 years old now and he has had FTD for at least 5 years and he is still well able to recognise everyone and he is very physically fit. I know that it is a progressive illness and no one can say how the progression will occur for each individual.

I would suggest you try to make the best of each day that mum is recognising you and each day that she lives

Sending you love and best wishes and I am sure some younger ones will be around soon.

 

[Brucie]

Hi and welcome,

it is a heck of a responsibility you are taking on and I hope that Talking Point can help you.

Please don't write off those who are not so young - my wife was 50 when dementia struck, so young onset affects everyone, though in different ways according to age and circumstance.

I can't begin to contemplate how I would have managed at your age, had my Jan been my Mum.

Take things slowly, learn as much as you can about the condition and coping strategies - and how and where to get help.

 

[Jase]

Hi Ecogeek

Welcome to TP! I'm not as young as you but have been dealing with simialr issues since I was about 27. My mum has just turned 60 and was diagnosed with vascular dementia last year, she had been treated for depression for a few years prior to this.

Mum now manages her own personal care and little bits of laundry and cleaning but I help with her meals, shopping, finances and the bigger cleaning and laundry tasks.

I work part time and have a toddler so my plate is pretty full.
I can empathise with how you feel at the minute, I have so much resentment for people whose mum's don't suffer from this disease and often feel I ought to be old enough to deal with it but at the end of the day she's my mum and I still need my mum!

Keep talking and take care
K x

 

[jenniferpa]

Hey Jase - it doesn't matter how old you are: everyone sometimes wants their mum

 

[Bookworm]

Hello from an eco fanatic

Hello Ecogeek - I'm really glad you've joined because I think my son (is 16 going on 17 close enough? - he is very mature for his age...) would be pleased to hear that you are here even if he does not yet come on the forum to post. We think my husband has FTD - no diagnosis but it looks likely - the GP says he'll go on doing quite a lot of what he does now for maybe a year or two - or longer - it is just more & more falls to me to ensure he does not fall down on what he commits to. There is just me and my son - no others - just a home of three. My son & I are maybe closer than ever because of what is going on. I think of him as a carer already - when I'm not here he keeps things safe. When I'm home he allows his frustrations to boil over - but when I'm out he rises to the need and is brilliant at caring.

My son values PH's many talents a great deal - but it is incredibly annoying seeing the chaos at home, in the diary, in the things that need rescued before they go wrong & we want to be caring all the time but have to learn to be that way. Making progress on that - but at first we just got irritated when the person we know so well seemed so different.

Almost everything that goes wrong could happen in any home - it is just rather continuous chaos in the making rather than sporadic one offs that occur in other peoples homes!!

Anyhow - we are really into environmental issues which I assume your name indicates you are.

Hope you really feel warmed by the company here - I'm about the same age as your mum too. Bye for now, xox

 

[Annoula]

hello EcoGeek,

i am 36 and care for my mother who is 80.
she is in a pretty good condition but i am alone in this and there were times i was totally lost. i hope these times don't come up again.. but i suppose they will..

i don't have a family of my own and under these circumstances i am not really interested in having one.
there are so many times i fear what will happen of me when my mother goes away.. i will be all alone and will have to "restart" my life someway and somehow.

i also fear what will happen to my mother if something bad happens to me. no one knows her medication.

many of the carers feel that their life has come to an end. i think you are lucky while in this. you are not the sole carer so you can still have your life.
even if you help just a little bit you give your mother's carers a huge help. you are very important to them and your mother.

take care!

 

[CJ75]

hi there,

I'm not as young as you but I am 33 helping care for my mum who is 58 and has Alzheimers. I have 2 young children and find it very hard doing everything. I know exactly how you feel with the "its not fair, I'm so young and shes so young". I believe that whatever the ages of the other carers on here, we're all in the same boat and theres so much support here, you're not alone xx

 

[Leonie]

Hi EcoGeek,

I am 32 - so a bit older . I think being a carer has its challenges whatever your age. But I also think that there are likely to be very specific experiences at different stages of life.

Not unlike Annoula, I couldn't even begin thinking of having my own family right now (with caring responsibilities, redundancies at work at the minute and a recession underway).

Life is a funny ol' thing. But we deal with our hand as best we can...

Keep posting - Talking Point is a great resource, with really lovely people on board who can share and empathise with your experiences...

 

[frizzie]

Although not my Dad's primary carer (that's my Mum), I only live around the corner and so see him most days. I'm 30 and I have 3 young children. I'm the same as others and feel like my Dad has been stolen from me, he progressed really quickly. It's like you're trying to grieve for someone but you have this walking, breathing reminder of the person you miss so much. Sorry to be such a misery, but I'm just feeling so overwhelmed by the whole thing at the moment!

 

[dmsr1973]

Hi,
I'm 35 Mum diagnosed 2 years ago now, she's 61 and we have noticed changes in Mum for a number of years now. She lives at home on her own but my brother, an alzheimers helper and myself call in regularly and two other siblings on weekends.

Last year I felt the world was falling around my feet. I got councilling for a few months which was one of the best things I've ever done. I just felt I was complaining all the time and sinking deeper. After all this disease is progressive and not plesant and I just felt I was whinging all the time even though I was probably talking about on-going things all the time. I felt that at counciling it was my time and space and the other person was genuinely interested in listening and helping. While there I made a few decisions for me. I decided I didn't want to care for my Mum full time, I couldn't as I had my own family (2 young kids, husband and another en route). Also after Mum is gone I didn't want to feel "robbed". So I decided to get more help for Mum, started a distance learning course for me, got a cleaner in for 3hrs a week and when my kids are started school I'll go back to work. I'm determined to enjoy and help Mum as best I can, but I can't sacrafice mine or my own familys lives.

I still feel panic in my chest when I think of my Mum. But at least I feel I've a start. I don't know if this is of any help. Sorry for waffling. Thanks. Best of luck!

 

[MandyW]

Hi,
Im 31, my mum has had dementia now for 10 years so I was your age when she was diagnosed. I am not my mum's primary carer but I am very involved. It's hard, very hard. You cant imagine growing up without your mum being there with you every step of the way, my mum is in the final stages and although she has been unwell for so long, I still feel like I need her, I miss her every day and am jelous of my friends when they are with their mum's.
My way of coping is just by getting through evey day, and I've been doing that now for almost 10 years, but I still have my mum there in body to touch and cuddle her, I draw strength from that.
Good luck and know that although it seems like you're the only person going through this, you're not and we are all here for eachother.

Take care of yourself as well as your mum.
Mandy W

 

[laura d]

Hey, I've recently turned 20 and my Dad was diagnosed with LBDementia with Parkinson's three and a half years ago and i think I may have some idea how you feel. There's so much I could say to you but I don't think they make posts long enough! lol Like you though I found it very hard to find anyone I could relate to...I never have found anyone.
I also share your heartbreak, I know my Dad will never walk me up the aisle and likely not even be there when it happens or ever see his grandchildren. The thing I hold onto though is knowing that I have done, and contiune to do, everything i possibly could to look after him and hope that somewhere deep down he must know this and know that I love him so very very much!
I hope this helps you to know that you're not alone and don't shoulder everything yourself...really take of yourself just as much too! If you do want to talk or vent that send me a message
Laura

ps...you are a carer simply because you care.

 

[Cezar]

Hi Ecogeek and Laura D,

I'm in the same boat as you guys (I'm 23). I live my mum and younger sister (21). I also have an older brother and sister, but they dont live with us or really help at all, it's just me and my younger sis.

My mum was Diagnosed with early onset dementia about three to four years ago (she's 55), it came when I was roughly in my final year of uni with dreams of travelling and seeing the world,

over the 3-4 years my mums changed from being mum, going to work, cooking amazing food, making me laugh, giving me headache (like "normal" mums do), telling me to keep the music down, to being a stranger/baby.....she can no longer do very much for herself I even have to help brush her teeth get her dressed etc.

she no longer has any common sense, if she has a cough she will just cough and cough for hours , she wont think "oh i'll just get a glass of water" or ask for one. It's things like this which understandabley are now starting to really frustrate me, and believe me i'm the most laid back guy in the world!

Recently after having a breakdown during a much needed family meeting, we came to the conclusion that we need some professional care to help with the care for mum. so now a carer comes in the morning for one hour and the evening for one hour, mum also now goes to daycare 5 days a week, basically like going to school. so now when i'm at work my mind can rest easy that she at "school" during the day.

I too cant believe that this is happeneing to me at such a young age, when all my mates are going out and stuff, i just want a break! some days I feel like I wanna blow my brains out. If I didnt have my sister with me in this battle, I honestly dont know if I would still be here , but man having a full time job as well as looking for that ever elusive graduate job as well as being a carer really sucks!

I think the most useful bit of advice I can give you is to get that proffessional care asap, cos your frustrations will just build up which wont do you any good at all, and to keep your hobbies going. I swim for a club so that keeps me busy quite a few evenings a week and straight after swimming training I go for an hour bike ride round central london.I also go to street dance classes and hopefully salsa soon plus I'm in a band ....without these things I would be really depressed and super dupa insane.

Anyway sorry for my rambling on, this is my first post but I came across this forum a few months back...Just surprised to find another early 20 something with the same story as me! I too thought I was the only one.

be good to hear from you guys

Keep your Head Up!

 

[rio_stokes]

hi i know exactly how you feel i'm only 23 and my mum was diagnosed when she was just 57. i recently got engaged which has drawn attention to the fact my mum will probably not see my wedding day and will certainly never know my children. i find the whole situation completely heartbreaking as my mum is also aware of what she is going to miss out on although i'm not sure how much longer this will last.

just remember you're not alone and there are always people out there who are willing and able to help you x

 

[karen1]

Hi,

I'm Karen and i'm 31, I thought I was too young to be going through this and it shouldn't be happening. If you need to talk, i'm there.

x

 

[Lauren]

Hi Ecogeek!

Im 21 and my mum was diagnosed with early onset dementia 3-4 years ago and she is now 60! I have been at uni doing midwifery for 2 years!
For the past few years i have been able to accept it and help out even though its hard as i have moved away for bit while at uni! We would laugh with her and she would have her good days and bad days and we learnt how to deal with each and every day!
I see my friends and their mums and im so jealous! the bonds that im missing out on! Im too young to be missing my mum like this! I want her back so much! Its like im grieving already!

It must be hard to know that your getting married and your mum is not well but i do think that is all our worries when it happens to us so young! as its your mum that you want there most!

When you say she may not see you 25th this may suprise you that it could be very much longer that that! My mum has had it for nearly 4 years and she still knows who i am, can have a laugh with us and spend alot of time with the family! obviously she has alot of bad days but you have to see behond that and see all the good things! She will just need alot more help with certain things!
When my mum was diagnosed i wanted to know the life spam and things but now i know how she is and what to expect this is the least of your worries and you just have to enjoy her now and for as long as she is here! Which we can never put a time on! I really do hope she makes it to your wedding! maybe you should have it sooner rather than later!

Keep in touch Take care
Love Laurenx

 

[EcoGeek]

Ooops, i should update more...

Hi all,

Sorry I sort of spaced out of TP for months, but I'm very impressed that this thread kept goin without my contribution!

It is great (and also kinda awful!) to know I'm not the only young person going through this.

And side note to Lauren here: lol, when I talked about my mum missing my wedding it was a hypothetical future wedding, I don't even have a boyfriend currently!

Hi Cezar, 1. never apologise for rambling, its what this place is for, we all need to vent. And 2. I couldn't agree with you more about the hobbies, I have just gotten back into swimming and I managed to go quite regularly when I was at home being the sole carer for my mum and it was amazingly good stress relief.

I hope none of the people who have posted have felt like I'm ignoring them but I'll sign off here as I'm getting dizzy (although that could be my flu!)

stay strong in the struggle, Eco

 

[rimmel11]

Young carer who excited to think not the only one!

hey all......
my mum is 53 and there is an impending diagnosis of FTD (we've been trying to get a diagnosis for nearly 3years) I have just helped her divorce my dad which was completed a few months ago so its just me, aged 23, with two brothers who are as useful as a chocolate teapot!....Its good to know we're are not alone, feels like the wieght of the world on your shoulders sometimes but ours mates just dont get it, or cant and its hard not to, but you do get jealous and we should have our whole lives ahead us but you just cant think about that because you have a huge responsibility......
Im glad im not alone, I was told it was pretty rare for people our age to be in this situation and in a way it can be harder because you just begin to realise how amazing your mum or dad is and then you have to watch them dissappear...
im pretty keen to meet up with, or at least be an internet buddy with someone in the same situation, so get in touch if you need to vent, its needed!!
speak soon
katie