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In your 20's? Parent with Early Onset?

Liz21

Registered User
Jan 18, 2016
26
Sorry to hear you are all feeling like this! I was in sainsburys yesterday and Mothers Day cards and gifts were surrounding me. I basically stood at the self service till with tears in my eyes! I am 29, 8 months pregnant with a 4 year old. A time where I really need a mum telephone chat to know everything will be fine and just to have a vent because I'm a crazy hormonal lady, I can't as she's in a home.

My heart goes out to all of you. I just try to cherish the good times when I see mum and be greatful that I still have a mum to visit, even though she's not the mum I once knew. Xx


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Hi Alex

I've been wondering how you're getting on - not long to go. You must be exhausted! It must be incredibly hard for you without your mum to reassure you - I'm sure she would have been excited about the arrival of a new baby. I've found new babies in our family have given us hope and a reason to enjoy spending time together, they are a great distraction in difficult times, as well as triggering heartbreaking thoughts.

I'm really missing my dad this week - why are some weeks worse than others?! I've found it hard this week to answers questions from others about dad. "Is he ok?" I hope so. "Is he getting better?" There really still isn't the understanding that this is a terminal illness. "How are you?" - distraught but the easier answer is fine!!!

I really feel like the rest of the world is shut off from this world of dementia... I truly am grateful that I can speak to people on here where you don't have to explain!

Xxx




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Liz21

Registered User
Jan 18, 2016
26
Mum is fascinated by the snow, she doesn't understand what 'this white stuff' is. Today has been a bad day with none mum related issues and I've cried because I just need a mum hug and to be told everything will be ok. I feel so much loss for her and so selfish because I just need her to be my parent right now but I know that role has truly gone for good. I'm sorry for going on I'm just so lost and sad :(
I completely understand where you're coming from - but it is ok to feel sad because it is so incredibly sad what's happened to our parents.

Keep talking to us all

X



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Liz21

Registered User
Jan 18, 2016
26
Hi Guys,

I'm 24 and my mum's been living with Alzheimer's for the past 5 years - it's still kind of a relief to see other people I can identify with, although obviously I'd rather other people weren't in a similar position to me!

My mum lives in a nursing home too and sometimes visits can be really hard but it makes the good ones all the more worthwhile :)
The good visits are great. I'm wondering whether I should start writing about my experiences with a parent with Alzheimer's. That way I can hold onto some positives!!!

X


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AlexEJ

Registered User
Nov 1, 2014
22
Hi Alex

I've been wondering how you're getting on - not long to go. You must be exhausted! It must be incredibly hard for you without your mum to reassure you - I'm sure she would have been excited about the arrival of a new baby. I've found new babies in our family have given us hope and a reason to enjoy spending time together, they are a great distraction in difficult times, as well as triggering heartbreaking thoughts.

I'm really missing my dad this week - why are some weeks worse than others?! I've found it hard this week to answers questions from others about dad. "Is he ok?" I hope so. "Is he getting better?" There really still isn't the understanding that this is a terminal illness. "How are you?" - distraught but the easier answer is fine!!!

I really feel like the rest of the world is shut off from this world of dementia... I truly am grateful that I can speak to people on here where you don't have to explain!

Xxx




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Hi Liz,

I totally understand what you mean when people ask questions. They want to ask, just as we would to our friends about their family members. It shows they care and are thinking about us which is a real comfort but, I do sometimes find it much easier to brush the comments away quite quickly and say 'yes, mum isn't too bad thank you'
A) I don't want to go into detail about how bad mum is because I'll get upset, B) I don't want my friends to think they've said the wrong thing when I start crying and C) sometimes it's nice to not actually talk about it.

I think we all have to be quite matter of fact about what our parents/us/our families are going through as it won't get any better and I try to focus on the positives each week, but like you there are times that I really miss my mum and I struggle to accept what is happening.

I am travelling back to Gloucestershire from London this afternoon as my dad, brother, his wife and children are taking mum out for an early dinner tomorrow night for Mothers Day. I just hope she's ok and not too 'stressed' by the whole experience.

Sending everyone big hugs X


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gsingl

Registered User
Feb 29, 2016
9
London
Hello everyone

It's really comforting to see that people of a similar age to me are going through the same thing. I'm 27 and my sister is 18 our mum is 57 and 2 years ago was diagnosed with Alzheimer's. She lives on her own and has carers 3 times a day. Over the past few months there has been quite a noticeable decline in my mum. She used to ask relatable questions and be able to show emotion but now I feel like she has lost/ doesn't have Empathy anymore. I used to feel like I could talk to her and she would get excited about things but now I don't feel like she even understands what I'm saying. She also pointed out to me today how she thought a reflection of a window in another window was interesting and funny. It's like she is reverting back to being a child. She even at one point today referred to me as being her parent! - she's mine!
I do miss my mum, even though she is here physically, she is a shade of what how used to be.

I'd love to meet some other young carers so would love to hear of anything going on in London. :)


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Hi Josie

I think it's safe to say many of us here have absolutely been in the situation you are now in. My dad's dementia is much more advanced now, and it doesn't get any easier to accept! It's just a horrible disease and I really do empathise as my brother is several years younger than me and having to cope with it all. I'm also based in London and am trying to find a mini group that might be meeting up - it's amazing to share experiences here but would be even better to be able to grab a wine with people in the same situation. At least your mum is still at home though, which is a positive as moving in to an assessment centre or home is extremely disruptive. Do you visit her often?

Gemma x
 

eburstow

Registered User
Mar 7, 2016
7
New to this..

Hi, came across this site by accident whilst searching for some form of support for young adults with a parent with Alzheimers. I am in my early 20's and my mum is 59 and got diagnosed 4 years ago. She is in a Dementia home now as the disease has completely taken her. I am at the point now where it literally kills me inside to see her the way she is. I feel so so useless, guilty and like I have failed as a daughter. I don't talk to anybody about it as nobody understands the pain thats felt when seeing your Mum like that. On a day to day basis at work as a student Nurse I am a very happy, giving and caring person who smiles all day but when I am alone or with Mum I feel emotions nobody should feel. I guess I am saying all this on here because I have not vocalised it to any body else. I have a very loving caring boyfriend but even he doesn't truly get how I feel inside. I am relieved that I am not the only one who is going through this everyday but also sad that there are others who are going through this also. Emily
 
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Liz21

Registered User
Jan 18, 2016
26
Hope you are ok Emily. This is a great place to talk and to vent!

Must be really difficult for you and your family.

It's so hard for people to fully understand the waves of emotion we all seem to be going through, unless they are in the situation.

X


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Liz21

Registered User
Jan 18, 2016
26
Had a really difficult visit today where dad asked me to take him home, look after him, didn't I want him? Why am I always working, working, working? He feels out on a limb! Argh!

This wave of heartbreak has been calmer in recent weeks but days like today are just so painful when he speaks with so much emotion and clarity.

X




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Kizzy001

Registered User
Apr 16, 2016
4
Wales
Hello, I am new to Talking point. I have been searching for something as I am finding it particularly difficult at the moment. I am 26 and my husband and I are caring for my mother-in-law who is 54. We are currently pushing the consultants for a proper diagnosis, she has had more thorough tests recently and despite my calls to them they still haven't given us any results. The memory nurse and community mental health worker told me that the problem is because she's so young no one wants to put a label on it. It's making I so difficult for us because we cannot get the help we need with her until we have the official diagnosis and she has declined so much. We have two small children and have had to move her in with us...its all very overwhelming for us to be honest. Can anyone offer ay advice on where we go from here, we feel stuck in limbo at the moment. Thanks
 

lissa_1990

Registered User
May 4, 2016
3
Hi all, am new to Talking Point.
Just wondering if there are many people in their 20's with a parent with Early Onset?

I have a parent and grandparent both with Alzheimer's and dementia...so it really has been our "world" for many years.

There appears to be so much less in the media and known about early onset.

We just make the most of every day
Hi Liz
I am 25 and my dad has early onset dementia. Its absolutely heartbreaking watching him change everyday and struggle with daily activities. One of the main things we are strugling with at the minute is extreme aggression he is already on anti psychotic quertiepine think we may need to increase the levels. Would love to hear from anyone who has had similar issues? We desperately want to avoid putting him in a care home but may be our only option if things continue as they are.
 

Hollygolucky

Registered User
May 12, 2016
1
Hi, my name is Holly. I'm 27 years old. I registered with this forum because I find it hard to talk to other people about my mum, who is 69years old and was diagnosed 3 years ago with mixed dementia. She doesn't technically have early onset but because I'm in my 20s I find it hard to find peers who understand.

I think my mums disease has progressed more rapidly than most, she lives in a care home now and she has begun to misidentify her children. Most recently she has been thinking my brother is her partner. This is really hard for him obviously.

I'm struggling because I seem to cope by just ignoring it. I spent one year living nearby to her in 2015 but I've since moved away again and I rarely ring her, maybe once every two weeks. I know that I'm letting time slip away and that I should cherish what we still have. I feel so guilty and like I have failed her. I miss my mum and I don't feel like it's really her there anymore. I had this crazy intense dream this week and I could see my mum as I remember her as a teenager. I woke up sobbing. I hate this disease and I find it so hard to process the emotions because it's such a long and gruelling decline. I feel guilty because sometimes I just wish it would be over.

I'm sorry that other people here are struggling too. I particularly identified with Emily because I too work in a caring role and I spend my days being happy and cheerful and caring for people other than my mum.

I wish everyone the very best and thank you if you read all of this. It helped to type it.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,259
Yorkshire
Hi HollygoLucky
I'm really glad it helped to get it all off your chest - you're among folks on this forum who recognise your situation and sympathise

everyone copes in their own way - there's no right or wrong - we all miss the person as they used to be and find our way to a relationship with the person as they are now

I know it made you cry, but how lovely that you had such a powerful dream - you will always cherish your memories

I guess your brother may be the age she has in her head for her partner - when I visit dad, I always call out to him before he sees me "Hello DAD, it's (my name), come to visit ..." so that he can orientate himself as to who I am and our relationship before he sees me - seems to work, so far - I look very like my mum, though he's only once called me by her name

if you are not able to ring her often maybe do the old fashioned letter writing, someone could then read your letter to your mum - maybe write on the back of a photo so there is some visual representation of you or something you've done, somewhere you've been - maybe a postcard - maybe even use an old photo of something you did together (maybe a copy of it) and write her the memory - I've found I can write what I want to say better than I can speak it

maybe even put together a book for her of her life, with those silly things in that only a daughter and mother share

there's a thread here you may appreciate
http://forum.alzheimers.org.uk/showthread.php?92279-My-niece-sent-this-to-me-this-evening

do post again, especially if it helps clear your mind - maybe start your own thread to get specific response
best wishes to all your family
 
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Liz21

Registered User
Jan 18, 2016
26
Hi all

Having just watched the programme about dementia it has stirred all sorts of feeling inside me. I know I need to be more positive, but there aren't too many positive experiences that I've found with this disease!!

I am not sure any programme will ever capture the reality, heartbreak and challenges that both sufferers and carers/family/friends face. The magnitude with which this disease affects everyone is too great to portray in a programme. Alzheimer's steals your hopes, dreams and ambitions and questions the future for all. Being the daughter and granddaughter of two amazing people with Alzheimer's disease has changed my perspective, challenged my thinking, created a new world of confusion and a constant sense of despair. I live in fear of the future...which family member will be next? Which perfect family unit will be the next to be destroyed by the tragedy that slowly and painfully unfolds before them? Will that lurch in my stomach and pain deep in my heart ever go away? But the love, care and protection I feel for my Dad could not be greater. I could not be prouder of him. His fight is strong, his love is constant and his fading smile creeps in from time to time. He's my daddy. And I still feel like his little girl that misses his protection, wise words, care and guidance. And I love him more than words can say.


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Kizzy001

Registered User
Apr 16, 2016
4
Wales
Diagnosis finally

Hi all,
I posted on here a few weeks back the difficulty I have been having in getting help and support with my mother in law. She has finally had her diagnosis...she is only 54 and is already in the middle stages of Alzheimers. I found ot difficult to get rhe diagnosis. .the process seemed to take forever. When to us it was so apparent. We're glad now we can finally get the help and support we need for her
 

Chelle_F

Registered User
May 23, 2016
1
Hi new to here and it comforting and heartbreaking to know that there are so many people in this situation. My mother was diagnosed 2 years ago and it's been so hard. Most days I don't know what to feel, anger, sadness and the feeling of why has this happened. My mother still lives at home but I don't know for how much longer that will be. She 64 and everyday that I see her I feel she has lost another part of what makes her my mum. It's like losing someone but being reminded of that loss everyday.

Does anyone else feel trapped in there individual situations and guilty when they have fun out of the carers roll?
 

Liz21

Registered User
Jan 18, 2016
26
If you've not watched Panorama on BBC 1 tonight then catch up on iplayer.

Finally a realistic programme!!!!


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Lalice

New member
Sep 29, 2017
1
Hi all,

I'm not sure if this thread is still open but I'm new to TP and just found it. I'm 24 and my mum was diagnosed with Alzheimer's at the start of 2016 at the age of 64 (although it had been manifesting a few years prior to her diagnosis). It's reassuring to see that there are other people in the same situation as like you guys said previously, Dementia is usually branded as an old persons disease so no one expects people in their 20's to have to care for a parent with dementia at such a young age. I hope you're all coping ok at the moment and I just wanted to send my best wishes to you all.
 

Kevinl

Registered User
Aug 24, 2013
4,764
Salford
Hi Lalice, welcome to TP
When my wife was diagnosed at 55 our children were about 18, 22 & 24, two of them still at university.
The youngest one's partner's dad was diagnosed when she was only 16 and still at school.
There are younger people on her but they're quite often posting about a grandparent although in some cases it is a parent.
If there's anything you want to know start a thread and ask. She'll most likely be entitled to benefits at some stage, possibly a council tax disregard and places like the AZ society, AGEUK and dementia cafes are all good source of information.
There are things that need sorting out while she still has capacity like a Lasting Power of Attorney (LPA) so someone can deal with her finances, health and welfare. There is quite a lot to learn so don't be afraid to ask.
K
 

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