• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

In your 20's? Parent with Early Onset?

Lash

Registered User
Jun 14, 2015
16
Yes you've hit the nail on the head, grieving and shock. I think I've been grieving on and off for the last 18 months really though I think a good 6 months or so of that I was in denial or at least just hoping that the signs and symptoms my mum was having we're me just being a bit dramatic? I've deffinatley been in shock, I mean I'm sure not one of us here expected this to happen or at least not when it has, even right up until diagnosis I was convincing myself it was a mistake and things were ok really. Mums progression I think will be quicker than I'm prepared for, her actions have become quite irrational (in the last 6-8 weeks) and her ability to complete every day tasks is beginning to be affected (last 2 weeks). I think I will definitely sign on the course, if you've not been offered it perhaps ask as there may be one near you that for some reason hasn't been offered xxx
 

Northern75

Registered User
Feb 7, 2016
49
Hope you won't mind me joining your convo - there has been so much said here that has resonated with me. In particular, something Liz21 said about missing her dad's advice. I didn't realise how much I relied on my dad for advice and support and just chats (actually, I probably used to offload on him too much) until it all came to a very sudden stop a few months back. Dad is with us in person, but I feel as though I haven't seen my 'real' dad since October. I am older than you all - 33 - but I go home every evening and sob like a child. Is this pathetic or is this normal? I feel guilty for thinking so much about my own sadness, my own loss. He is suffering every day now and it is awful to see him so sad and to feel so completely useless. I am so sorry for you all, not just that this is happening to you but that it's happening to you and your families when you're still in your 20s. Sending love to everyone x
 

AlexEJ

Registered User
Nov 1, 2014
22
Hope you won't mind me joining your convo - there has been so much said here that has resonated with me. In particular, something Liz21 said about missing her dad's advice. I didn't realise how much I relied on my dad for advice and support and just chats (actually, I probably used to offload on him too much) until it all came to a very sudden stop a few months back. Dad is with us in person, but I feel as though I haven't seen my 'real' dad since October. I am older than you all - 33 - but I go home every evening and sob like a child. Is this pathetic or is this normal? I feel guilty for thinking so much about my own sadness, my own loss. He is suffering every day now and it is awful to see him so sad and to feel so completely useless. I am so sorry for you all, not just that this is happening to you but that it's happening to you and your families when you're still in your 20s. Sending love to everyone x
Hi Victoria,

I'm so sorry that you too are another young person going through this awful time, just like so many of us here. I only starting posting here at the end of December, when my mum went into a home. But in fact, I should have done so way before because I didn't quite realise how many people were in the same situation as me. I felt totally on my own and never thought there would possibly be anyone else in my shoes, or be able to understand how I am
feeling. Oh how wrong was I?!

I cry a huge amount. The amount of tears I've cried about my mums health over the years is crazy. I can't think about my mum in a home before I go to sleep at night otherwise I simply don't sleep, I just cry. I had a dream the other night that she was no longer with us. It was such a vivid dream and the feeling of loss was something I've not felt before (even though it was a dream) I couldn't shake the dream from my thoughts the next day and realised that I this is only a fraction of the pain I will feel when the time comes and it was quite hard to get my head around.

My mum would hate for me to be sad/upset/ anxious etc, and even says now you must live each day to the full, but I sometimes feel I can't when I feel so guilty that she's in a home.


Sent from my iPhone using Talking Point
 

Liz21

Registered User
Jan 18, 2016
26
Hope you won't mind me joining your convo - there has been so much said here that has resonated with me. In particular, something Liz21 said about missing her dad's advice. I didn't realise how much I relied on my dad for advice and support and just chats (actually, I probably used to offload on him too much) until it all came to a very sudden stop a few months back. Dad is with us in person, but I feel as though I haven't seen my 'real' dad since October. I am older than you all - 33 - but I go home every evening and sob like a child. Is this pathetic or is this normal? I feel guilty for thinking so much about my own sadness, my own loss. He is suffering every day now and it is awful to see him so sad and to feel so completely useless. I am so sorry for you all, not just that this is happening to you but that it's happening to you and your families when you're still in your 20s. Sending love to everyone x
Of course we don't mind you joining us!

I've felt annoyed with myself for being upset ... and feeling like I should be coping! But only by joining this talking point website this month has proved to me that there are plenty of people who feel just as upset as me. The tears just fall when you least expect them. I've found talking on here helps me "offload" (not the right word but you know what I mean) and reflect on others situations too. I'm hoping its normal to grieve for the people we love and are important to us...and I guess none of us know when our journeys with this awful disease will end.

How are you getting on?
X


Sent from my iPhone using Talking Point
 

Liz21

Registered User
Jan 18, 2016
26
Yes you've hit the nail on the head, grieving and shock. I think I've been grieving on and off for the last 18 months really though I think a good 6 months or so of that I was in denial or at least just hoping that the signs and symptoms my mum was having we're me just being a bit dramatic? I've deffinatley been in shock, I mean I'm sure not one of us here expected this to happen or at least not when it has, even right up until diagnosis I was convincing myself it was a mistake and things were ok really. Mums progression I think will be quicker than I'm prepared for, her actions have become quite irrational (in the last 6-8 weeks) and her ability to complete every day tasks is beginning to be affected (last 2 weeks). I think I will definitely sign on the course, if you've not been offered it perhaps ask as there may be one near you that for some reason hasn't been offered xxx
Let us know how you get on at the course!

I'd love to wake up one day and this hadn't happened to all of us. Thinking of you all.

X


Sent from my iPhone using Talking Point
 

Northern75

Registered User
Feb 7, 2016
49
Hi Victoria,

I'm so sorry that you too are another young person going through this awful time, just like so many of us here. I only starting posting here at the end of December, when my mum went into a home. But in fact, I should have done so way before because I didn't quite realise how many people were in the same situation as me. I felt totally on my own and never thought there would possibly be anyone else in my shoes, or be able to understand how I am
feeling. Oh how wrong was I?!

I cry a huge amount. The amount of tears I've cried about my mums health over the years is crazy. I can't think about my mum in a home before I go to sleep at night otherwise I simply don't sleep, I just cry. I had a dream the other night that she was no longer with us. It was such a vivid dream and the feeling of loss was something I've not felt before (even though it was a dream) I couldn't shake the dream from my thoughts the next day and realised that I this is only a fraction of the pain I will feel when the time comes and it was quite hard to get my head around.

My mum would hate for me to be sad/upset/ anxious etc, and even says now you must live each day to the full, but I sometimes feel I can't when I feel so guilty that she's in a home.


Sent from my iPhone using Talking Point
Hi Alex, I'm really sorry to hear about your mum. Our experience has been pretty sudden, but I don't imagine that time makes it any easier at all - you've just had longer to watch your mum's health deteriorate and I can imagine how painful that must be. I understand what you say about talking here too - my husband can't understand why I'm talking to strangers, but it's because you're strangers that I feel I'm able to say exactly what I'm feeling and not have to worry about offending or upsetting anyone. It feels like having a massive weight eased for a moment. Like you, I find the nights very difficult. I am constantly on the go during the day - with dad, at work, trying to stay on top of things in my own house when I'm not at my parents' - then when the nights arrive everything falls silent and I'm alone with my thoughts and it's horrible. I cried last night over a photo of my dad taken on a day trip we shared together last summer - he looked so much like his 'old' self, and it just reminded me how much I'm missing him. He's still there - his sense of humour and sarcasm are still evident at times, and I love them so much - but seeing him so sad and so exhausted all the time is heartbreaking. You mustn't feel guilty about your mum being in a home (easy for she who feels guilty about absolutely everything to say) - your mum knows you love her, and if she's safe and well cared for these are the most important things. You are young and your mum wouldn't want you to put your life on hold. I don't know if others have felt the same, but I don't feel young anymore. The sadness is exhausting.
 

Northern75

Registered User
Feb 7, 2016
49
Of course we don't mind you joining us!

I've felt annoyed with myself for being upset ... and feeling like I should be coping! But only by joining this talking point website this month has proved to me that there are plenty of people who feel just as upset as me. The tears just fall when you least expect them. I've found talking on here helps me "offload" (not the right word but you know what I mean) and reflect on others situations too. I'm hoping its normal to grieve for the people we love and are important to us...and I guess none of us know when our journeys with this awful disease will end.

How are you getting on?
X


Sent from my iPhone using Talking Point
Hi Liz,

I've only been on here for 24 hours, but already I feel as though I have a kind of invisible support. As I just said to another member, it's not nice to know that so many other families are in this situation, but there is comfort in knowing my feelings aren't unique. It has scared me how quickly my emotions can alter at the moment (I've always been a bit overly emotional - if I'm upset, everyone knows about it), but I can go from sad to angry within seconds. Never in front of dad though (I'm ashamed to say that before his diagnosis I did used to get upset in front of him). My poor husband is putting up with a lot at the moment. He doesn't say, but I think I'm exhausting him. It's all very new to us all at the moment. How long has it been since your dad's diagnosis? And was he showing symptoms well before that? Don't be annoyed with yourself for being upset (says she!) I read somewhere recently that crying is a sign of inner strength. If that's the case, we must be super heroes x
 

Lash

Registered User
Jun 14, 2015
16
Hi again. Massive hugs to all of you. I completely understand those feelings of guilt over every little thing, then the feeling sad once the day to day distractions are finished, it really is exhausting!! I'm mentally shattered all the time. I too have never really confided in anyone about how I feel about mums 'condition' except my partner however now I've found this forum/chat I've found I'm actually more willing to discuss things with my friends and colleagues, it's quite refreshing though I'm sure they'll get bored me doing so soon haha! How does everyone's parents interact with them? Me and my mum were very very close but due to some decisions I've had to make for her safety and wellbeing she has taken a strong dislike to me and doesn't trust me. I'm trying to remind myself it's the Alzheimer's but it's so horrible xxx
 

sford91

Registered User
Nov 4, 2015
112
I am 24 and my sister is 22 our mam is 56 and diagnosed with early onset Frontal lobe dementia. It's heartbreaking and as a mental health nurse myself I see both sides of it. But as you have all said make the most of every minute and take each day as it comes we have to stay positive :)
 

Northern75

Registered User
Feb 7, 2016
49
I am 24 and my sister is 22 our mam is 56 and diagnosed with early onset Frontal lobe dementia. It's heartbreaking and as a mental health nurse myself I see both sides of it. But as you have all said make the most of every minute and take each day as it comes we have to stay positive :)
Hi sford21, I'm so sorry to hear about your mum - you are all so young to be facing this, your mother included. This website offers a lot of support - I've found it good to just be able to get things off my chest. I'm going to steal some of your positive energy - you're right, we need to make the most of what we have and accept the things we can't change, as difficult as that often is to do. Sending you hugs x
 

sford91

Registered User
Nov 4, 2015
112
You have to be positive in the most ****ty situations ( sorry for the language). Other wise you end up cracking up. Don't get me wrong I have my days when I think why us why mum we've been through enough over the years but if I continue that mentality I'll drive myself crackers and end up being in hospital myself. I scare myself when I think into the future don't get me wrong like when I get married have children etc will she remember will she be with it enough to understand but again when I think tbh is I just upset myself again so I don't bother! Positive thought to everyone! Wish us luck as we're down sizing mum into a bungalow next week and this is what I worry that changes like this make her deteriorate.
 

Northern75

Registered User
Feb 7, 2016
49
You have to be positive in the most ****ty situations ( sorry for the language). Other wise you end up cracking up. Don't get me wrong I have my days when I think why us why mum we've been through enough over the years but if I continue that mentality I'll drive myself crackers and end up being in hospital myself. I scare myself when I think into the future don't get me wrong like when I get married have children etc will she remember will she be with it enough to understand but again when I think tbh is I just upset myself again so I don't bother! Positive thought to everyone! Wish us luck as we're down sizing mum into a bungalow next week and this is what I worry that changes like this make her deteriorate.
Is your mum still able to live alone at the moment? If so, it's good that she's able to maintain her independence. I try not to think about the future too much. Each day as it comes is enough at the moment. Hope everything goes well with the move. Try not to worry - surely helping your mum to maintain independence will be a good thing for her xx
 

sford91

Registered User
Nov 4, 2015
112
Heyy

Having pretty down day today so sorry for any negativity, yes currently she is still able to live independently within reason shes been assessed etc by occupational therapists and her community nurse so we are doing okay for now, But the change in her the past couple of years if i think back is totally drastic but again i try not to think about this as it upsets me we just go with how she is day today and she will always be mum regardless. However my sister made comment earlier today that has made me think how she feels mum isnt 'mum' anymore and what I think she means by this is that we now care and support mum and she can't necessarily do this how she used to for us if that makes sense? I explained to my sister that mum will ALWAYS be our mum regardless of her illness and yes i understand what she means but we just have to take mum as mum :)
 

Liz21

Registered User
Jan 18, 2016
26
How are you all?

Tricky visit to Dad today...but better by the end! Still so very different from minute to minute...such a roller coaster.

On the whole, I think I'm feeling "better" about him being in a home - hard tho when some of my recent visits haven't been as positive.

How is everyone?

X


Sent from my iPhone using Talking Point
 

sford91

Registered User
Nov 4, 2015
112
Hi,

Glad your feeling better about things must be very difficult having your dad in a home? Is it also a relief? I don't mean that to sound awful but knowing he had care and support at all times?

I'm not to bad my frustrations are with the ongoing issues with mums moving house just one thing after another with it but she herself is fine just stressed and frustrated at the situation too.

:)
 

Olivia15

Registered User
Feb 24, 2016
38
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 :)
 

gsingl

Registered User
Feb 29, 2016
9
London
Hi all

Such a relief to hear so many of you going through the same as me. My dad is now at the sharp end of dementia and Parkinson's and has been at an assessment centre for a year now... He's been given now a place at a high management care home as he the combination of medication/diseases has lead to aggression and we just couldn't have him come home now.

It's incredibly hard, and I live in London so am racked with guilt at not being there all the time. My mum is such a lively 60-something, and I feel so sad that our lives haven't worked out as we'd hoped right now. But I DO understand that you have to take life with all it's good bits and **** bits, but to have it happen to a parent when I'm in my twenties and my brother even younger than that makes me really down at times.

I've read in another forum that some people have tried to start meeting up in London just so you can have a group chat with others face to face. Do shout if anyone fancies it, but just knowing so many of you are here is brilliant.

Gemma xx
 

Josiem6

Registered User
Feb 1, 2016
4
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. :)


Sent from my iPhone using Talking Point
 

Lash

Registered User
Jun 14, 2015
16
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 :(
 

AlexEJ

Registered User
Nov 1, 2014
22
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


Sent from my iPhone using Talking Point