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In your 20's? Parent with Early Onset?

AlexEJ

Registered User
Nov 1, 2014
22
Hi I'm 29 and my mum (63 in a couple of days) was diagnosed with Alzheimer's in December though symptoms were present for about 2 years, things are progressing quicker than I anticipated and its heart breaking. I no longer feel like a daughter and more someone who nags and tries to help but she doesn't understand why. Lowest point so far was her not knowing and still not realising weeks later that it was my birthday (I'm her youngest of 3). Xx
Hi,

I'm so sorry for the situation you find yourself in with your mum. You are not alone at all, I'm 29 also and my mum is now in a home. It's so sad to watch the people you love most in the world go through this awful disease and it's so hard as these people are the ones who used to know absolutely everything about us and now know nothing. My mum would have no idea about my birthday. I'm pregnant and due in April and I'm sure without a little reminder she'd forget I was even pregnant, she can't remember that I'm having a boy. These are big things in my life and it's hard to get my head around that mum my can't remember. I got married last May and although she knows I'm married she has totally no recollection of the day.

It's totally heart breaking that these events/occasions are forgotten. Everytime my mum gets a little worse or forgets something quite significant I feel like I mourn a part of her.

It's easier said than done but, stay strong and really treasure every single moment with your mum. Does she have a diary that you could put birthdays into which she could look at with a prompt?

As said before, keep talking to us as it seems so many of us are going through the same thing.

Alex
X


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Liz21

Registered User
Jan 18, 2016
26
Hi,

I'm so sorry for the situation you find yourself in with your mum. You are not alone at all, I'm 29 also and my mum is now in a home. It's so sad to watch the people you love most in the world go through this awful disease and it's so hard as these people are the ones who used to know absolutely everything about us and now know nothing. My mum would have no idea about my birthday. I'm pregnant and due in April and I'm sure without a little reminder she'd forget I was even pregnant, she can't remember that I'm having a boy. These are big things in my life and it's hard to get my head around that mum my can't remember. I got married last May and although she knows I'm married she has totally no recollection of the day.

It's totally heart breaking that these events/occasions are forgotten. Everytime my mum gets a little worse or forgets something quite significant I feel like I mourn a part of her.

It's easier said than done but, stay strong and really treasure every single moment with your mum. Does she have a diary that you could put birthdays into which she could look at with a prompt?

As said before, keep talking to us as it seems so many of us are going through the same thing.

Alex
X


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How's it going Alex?

Dad said today that he hates it in the home, "how did I get to this, to now be in here?" "You don't know what it's like to be me in here" he keeps saying he hates the nights because mum isn't there.

It's so hard because I honestly do think that's how he's feeling! It's so hard coming up with responses. (And feeling inside that all you want to do is scoop him up and take him home with you!) but I do know he's in The best place etc!!!

When I started this thread I never imagined there would be so many 29 year olds in the same situation!

Xx


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AlexEJ

Registered User
Nov 1, 2014
22
I know just how you feel. I saw mum last weekend and she sobbed. My heart broke into a million pieces and like you, I just wanted to pack her bags and take her home. But my head knows that's not the answer.It's just such an emotional roller coaster!

She asked if we were going home. She's picked up a chest infection in there so I just said, let's get you better and skirted around her question. She knows she's not at home, but doesn't quite know where she is. She suffers with anxiety, always has done, always will do but to calm her the home gave her a sedative which made her like a zombie. When I went on Sunday she was asleep in the chair....my mum would never sleep in the day and she looked about 80! She's 68, and with a touch of make up (which I used to sometimes do for her) she'd look years younger, so to see her like that doesn't sit right with me. I think so much about her and find it hard to accept she's in the home at a young age. I say 'goodnight' every night before I fall asleep but try not to think about it after that otherwise I just don't sleep.

I guess that in time it will become easier to accept that this is how it is and I just keep reminding myself that my dad is now better for her being in there and it's the lesser of 2 evils as she's in good hands!

I know, it's crazy that so many of us under 30 have parents going through this. What part of the UK are you in?

Alex


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Liz21

Registered User
Jan 18, 2016
26
I know just how you feel. I saw mum last weekend and she sobbed. My heart broke into a million pieces and like you, I just wanted to pack her bags and take her home. But my head knows that's not the answer.It's just such an emotional roller coaster!

She asked if we were going home. She's picked up a chest infection in there so I just said, let's get you better and skirted around her question. She knows she's not at home, but doesn't quite know where she is. She suffers with anxiety, always has done, always will do but to calm her the home gave her a sedative which made her like a zombie. When I went on Sunday she was asleep in the chair....my mum would never sleep in the day and she looked about 80! She's 68, and with a touch of make up (which I used to sometimes do for her) she'd look years younger, so to see her like that doesn't sit right with me. I think so much about her and find it hard to accept she's in the home at a young age. I say 'goodnight' every night before I fall asleep but try not to think about it after that otherwise I just don't sleep.

I guess that in time it will become easier to accept that this is how it is and I just keep reminding myself that my dad is now better for her being in there and it's the lesser of 2 evils as she's in good hands!

I know, it's crazy that so many of us under 30 have parents going through this. What part of the UK are you in?

Alex


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Literally exactly how I feel! I'm trying not to overthink things...but I too am a worrier just like my dad!! I've been on this roller coaster for 7 years, but at the moment it's pretty rocky!!

Yes, my mum and dad are both safe now he is in the home. It's just so heartbreaking. Mum is just so upset that he's not there. They've been together since she was 18.

It must be incredibly difficult for you. Hope you are being looked after.

We're in Dorset.

X



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nictaurus86

Registered User
Jan 27, 2016
1
I understand

Hi Liz 21

My 29 year old daughter is in your position as her Dad/my husband has both Early onset Alzheimers Dementia and Parkinsons Disease. She is going to join Talking Point over the next few days and will respond to you on Talking Point. I think it would be good for her as well to talk about it.
Hi

The above post was from my Mum. My Dad is 62 and in a care home. If you have any questions or just want to talk then message me :) It's taken me a long time to come to terms with it and still have struggles with it.
 

Liz21

Registered User
Jan 18, 2016
26
Hi

The above post was from my Mum. My Dad is 62 and in a care home. If you have any questions or just want to talk then message me :) It's taken me a long time to come to terms with it and still have struggles with it.
Hiya - welcome to our thread!

It's definitely hard to come to terms with- and to accept that there's always another difficult moment not far off!

How are you finding things now?






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Cat27

Volunteer Moderator
Feb 27, 2015
10,907
Merseyside
Hi

The above post was from my Mum. My Dad is 62 and in a care home. If you have any questions or just want to talk then message me :) It's taken me a long time to come to terms with it and still have struggles with it.
Welcome to TP :)
You'll get lots of support here.
 

AlexEJ

Registered User
Nov 1, 2014
22
I'm having a down day today. I've just spoken with my dad and I asked how mum was when he went to see her yesterday and he said she was fine but he said she was looking very old. This breaks my heart as she was probably just sat in the chair asleep when he got there (generally how I picture people when I think of a care home) and it just makes me so so sad to think of her like that. I know I can't change anything but I do just have days when I think 'why my mum?'
I can't do anything from where I am, 3 hours away and I can't pop in to see her each week so I just get really sad for her. I can't really put it into words as it's an odd feeling. I can't walk around all doom and gloom as I have a 4 year old and baby on the way, so there is so much to be thankful for, but I do have an empty/lost feeling when I think of my mum in the home. Almost like I've lost her already and I want to get her back. I want to have a proper conversation with her about what I'm up to, my children etc and I can't.


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Jasmine123

Registered User
Jan 22, 2014
40
Snap

Hi AlexEJ and rest of this thread,

I'm 29 and my 62 year old mum moved into a home last week. She is pretty advanced and can't talk anymore so I guess I don't have to go through being upset about my mum wanting to go home. I think my mum is so advanced she doesn't understand what home was and has thankfully passed the anxious stage.

I do think we spent so much time trying to find a good home with fun activities but now she is so advanced she doesn't react to anything so all the activities seem a waste.

I visited her last weekend and she just slept and wouldn't wake up. I just sat with her for 4 hours trying and failing to her to wake up and smile at me. I thankfully live near the home but I am trying to stop myself cancelling all my weekday evening plans to visit her. I wouldn't be able to leave work before 6pm so wouldn't get there before 7pm and I don't want to go and just find her asleep again.

Thanks AlexEJ for starting this discussion as I am glad I can discuss this here.
 

Josiem6

Registered User
Feb 1, 2016
4
Hello. I'm 27 and my sister is 18. Two years ago our mum was diagnosed with early onset Alzheimer's. She is now 57. I live an hour away from her but my sister loves with her two nights a week but doesn't want to do much more as she finds her embarrassing and frustrating. I wish there was something I could take my sister to for her to learn a little more about Alzheimer's and meet other youngsters in the same position! We are in the West Sussex area.


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AlexEJ

Registered User
Nov 1, 2014
22
Hi AlexEJ and rest of this thread,

I'm 29 and my 62 year old mum moved into a home last week. She is pretty advanced and can't talk anymore so I guess I don't have to go through being upset about my mum wanting to go home. I think my mum is so advanced she doesn't understand what home was and has thankfully passed the anxious stage.

I do think we spent so much time trying to find a good home with fun activities but now she is so advanced she doesn't react to anything so all the activities seem a waste.

I visited her last weekend and she just slept and wouldn't wake up. I just sat with her for 4 hours trying and failing to her to wake up and smile at me. I thankfully live near the home but I am trying to stop myself cancelling all my weekday evening plans to visit her. I wouldn't be able to leave work before 6pm so wouldn't get there before 7pm and I don't want to go and just find her asleep again.

Thanks AlexEJ for starting this discussion as I am glad I can discuss this here.
Hi Jasmine,

I'm so sorry to hear of your mums stage of dementia. As people keep saying to me, it's important to live your life and not spread yourself too thin. Don't put pressure on yourself to see your mum everyday. You both know you love her dearly as she
does you too. I'm sure she would hate for you to cancel plans.

I just can't believe there are so many of us under 30, with parents in their 60's in care homes. These is an awful awful disease.

X





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Lash

Registered User
Jun 14, 2015
16
Wow this is heartbreaking to read and yet gives me strength and hope too. I can't believe how many of us there are who haven't even yet got to 30 and yet are trying to manage this sadness and care for our loved ones. It's so sad to watch that person you idolised become fragments of who they were. I do not feel I can say are as for my mum she is not the same, her humour and wit are no longer present and her compassion and warmth is no longer given. I miss the mum cuddles and talks the most :(

Just wondering where in the country everyone is?

Xxx
 

Liz21

Registered User
Jan 18, 2016
26
Wow this is heartbreaking to read and yet gives me strength and hope too. I can't believe how many of us there are who haven't even yet got to 30 and yet are trying to manage this sadness and care for our loved ones. It's so sad to watch that person you idolised become fragments of who they were. I do not feel I can say are as for my mum she is not the same, her humour and wit are no longer present and her compassion and warmth is no longer given. I miss the mum cuddles and talks the most :(

Just wondering where in the country everyone is?

Xxx
Thanks for your comments. I miss the advice dad would give! There are times when I don't like making tricky adult decisions and would quite like to resign from adulthood!!!
I think it's the fact we've had to become parents to our parents.
I do wish there was more support (like this group) out there for people in our situation, because we seem to have discovered quite a few people in just a few days. You're right Lash, it's heartbreaking but comforting to know.

Liz x



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Cat27

Volunteer Moderator
Feb 27, 2015
10,907
Merseyside
Thanks for your comments. I miss the advice dad would give! There are times when I don't like making tricky adult decisions

Liz x



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I'm 47 & feel the same way. I talked to dad about everything & now I can't say anything.
 

AlexEJ

Registered User
Nov 1, 2014
22
Wow this is heartbreaking to read and yet gives me strength and hope too. I can't believe how many of us there are who haven't even yet got to 30 and yet are trying to manage this sadness and care for our loved ones. It's so sad to watch that person you idolised become fragments of who they were. I do not feel I can say are as for my mum she is not the same, her humour and wit are no longer present and her compassion and warmth is no longer given. I miss the mum cuddles and talks the most :(

Just wondering where in the country everyone is?

Xxx
Hi lash,

I can totally sympathise with you! My mum was the BEST at cuddles, she was always so encouraging, compassionate and the most thoughtful of people. My friends when I was at school would always say your mum is so kind and loving. They'd love to come to our house as my mum would mother them and treat them like one of her own.

My 4 year old daughter tells me she doesn't like my mum. I try not to cry each time she says this, but to a 4 year old she doesn't understand why my mum gets cross, anxious, repetitive and it probably scares my daughter a bit. If mum wasn't under the spell of this awful disease my daughter would totally idolise her, as I did. I had a few female health issues regarding my cervix last summer (please everyone go for your smear) and I was frightened and just wanted to talk to my mum about it for reassurance but couldn't as she would worry, then not remember why she was worried so I had to talk to my dad about it. He's amazing, but he doesn't have a cervix so can't relate. As a consequence I've had a tricky pregnancy so far, again id love to talk to my mum about it but I can't.

My heart goes out to all those who are going through similar. I feel like I'm grieving already!
I try to put things into perspective a little and think that there are always people in a worse situation than me so I should be grateful for the wonderful times and at the end of the day she's still alive, just all be it not really there.

Love to you all
X

Ps I'm I live in London x


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Lash

Registered User
Jun 14, 2015
16
Just wondering how everyone is getting on? We had our first meet with an Alzheimer's advisor today, I don't think my mum really understood why she was there (she doesn't understand she has a kind of dementia at all) but it was good for us I think and given us an idea of what support there is. The advisor did mention there is a course to learn about the aspects of this horrible thing including communication etc, it sounded good but wondering if anyone else had been on it?

Alex - how is your mum? My sisters 4 year old is also quite frightened, I can understand it but it adds to the devastation really doesn't it, they'll never know the person you did :(

Xx
 

Liz21

Registered User
Jan 18, 2016
26
I took dad out of the home today for the first time .... And it was much better than I thought it was going to be. Feeling a bit more upbeat about things.

Thanks for all your support and comments.

X



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Liz21

Registered User
Jan 18, 2016
26
Just wondering how everyone is getting on? We had our first meet with an Alzheimer's advisor today, I don't think my mum really understood why she was there (she doesn't understand she has a kind of dementia at all) but it was good for us I think and given us an idea of what support there is. The advisor did mention there is a course to learn about the aspects of this horrible thing including communication etc, it sounded good but wondering if anyone else had been on it?

Alex - how is your mum? My sisters 4 year old is also quite frightened, I can understand it but it adds to the devastation really doesn't it, they'll never know the person you did :(

Xx
We've never been offered a course so this sounds really good opportunity to meet other people and ask questions. But... You know your mum better than anyone...just remember that!

I do find it interesting to see which are general "Alzheimer's" symptoms and which appear to be unique to my dad and his mum. Still find it odd that my parent and grandparent are in the situation together!

X



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Liz21

Registered User
Jan 18, 2016
26
Hi lash,

I can totally sympathise with you! My mum was the BEST at cuddles, she was always so encouraging, compassionate and the most thoughtful of people. My friends when I was at school would always say your mum is so kind and loving. They'd love to come to our house as my mum would mother them and treat them like one of her own.

My 4 year old daughter tells me she doesn't like my mum. I try not to cry each time she says this, but to a 4 year old she doesn't understand why my mum gets cross, anxious, repetitive and it probably scares my daughter a bit. If mum wasn't under the spell of this awful disease my daughter would totally idolise her, as I did. I had a few female health issues regarding my cervix last summer (please everyone go for your smear) and I was frightened and just wanted to talk to my mum about it for reassurance but couldn't as she would worry, then not remember why she was worried so I had to talk to my dad about it. He's amazing, but he doesn't have a cervix so can't relate. As a consequence I've had a tricky pregnancy so far, again id love to talk to my mum about it but I can't.

My heart goes out to all those who are going through similar. I feel like I'm grieving already!
I try to put things into perspective a little and think that there are always people in a worse situation than me so I should be grateful for the wonderful times and at the end of the day she's still alive, just all be it not really there.

Love to you all
X

Ps I'm I live in London x


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It just sounds totally heartbreaking for you Alex.

Yes...I feel like I'm grieving already...combined with a bit of shock. I'm guessing that must be similar for all of us? It feels odd to be grieving for someone who is still alive. And I can't really find a lot of reading material about it all...or guidance or support.

X


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