I want her back! I miss mum!

[Lauren]

Mum is still getting alot worse, I spent my easter holidays at home! Dad took mum and the carer to australia for 3 weeks to see her best friend and you can imagen as soon as she heard she was going she asked every minute when they were going.
Since then the deteriotion has rapidly declined It really upset me as she really really cant do anything for herself. She is still having these awful dreams screaming and shouting, I went in twice to help out dad and she didnt know who he was shouting for help saying a strange man was trying to kill her.
She always asks if she can go home even though she is home and she keeps saying 'i keep doing things wrong dont I' which of course we say No.

My dad is finding it more and more hard recently and im more concerned about him. When mum has the bad dreams he just doesnt know what to do and is exhausted in the morning.
Ive asked him to come on here or go to groups but he says its not for him. We have recently had to sack a carer as she was making mum upset (for the reason that we dont know)! So now have more pressure to fill in the 2 week gap for the alternative week set up we have,

Sorry to rant on but its hard to discuss things with my friends who have know idea what im going through!

I hate this horrible disease! I want my Mum back, i feel i have lost out majorly! Why could i not have my mum for a few more years why i could remember what she use to be like! 17 years of my mum is not long enough! 5 years on and Ive started to write down things that my mum use to do and say when i was younger so that i wont forget as its all i have!

Please would some brainy scientist come up with a cure and make my mum better! I suppose we can dream sometimes!xxXxx

 

[CraigC]

Hi Lauren,

Good to talk!

It is so upsetting and frustrating at times, you can't help feeling robbed. And painfully a cure is not round the corner so all we can do is keep nagging the people with the purse strings to spend more on research and help fund more brainy scientist. I still get so frustrated that in all this time we don't seem any closer to finding a cure.

Sorry your dad is tired. I tried to get mum to get some help when she cared for dad, but she was determined to go it alone. We got the practical help but she just wouldn't talk to anyone about the emotional side of things. Even with me it was hard for mum to let go. Mum dealt with it her own way by putting down a shield. She didn't want that kind of help but needed it, well I always felt that she needed it (if that makes sense) - so perhaps it was more for me than her. Parents, they are a worry

Really don't know how to convince your dad to get more emotional support, does he even speak to his GP about it? Perhaps you can twist his arm to speak about how he is coping if he see the GP regarding the dreams. Not a big fan of long term use of antipsychotics, but there are certain medications that can help with hallucinations and delusions. Also medications which can cause bad dreams, so definitely worth checking with GP if dad hasn't done it already. Sorry don't know the meds situation with your mum.

And you take care and try enjoy any special moments with mum and dad, even if they are few and far between.

Kind Regards
Craig

 

[jc141265]

Hi Lauren,

Just agreeing with your sentiments, I want them to find a cure too even though its too late for my Dad now. C'mon brainy scientists!!!

Twenty-two years wasn't enough for me either, especially as I left home for Uni at 16 so didn't realise that I was missing out on my last chances to know my Dad in the years in between.

Its a good idea to write down the things you still remember about who your mum was, I have so much trouble now 12 years down the track remembering stuff about him, especially when all the years of dementia have blurred that knowledge. I also wish though that I had gotten to know my Dad as an adult, I have all these childish memories of him being my wonderful father, but I find that I really didn't know him like people who were his peers did. I also wish I could have gotten to share my adult experiences with him. He never could have imagined the things I have done!

I will pray with all my might, that they find a cure in time for you and your mum. We have to dream...

Best wishes,

 

[whiteoleander]

Hi Lauren,
I can understand how your feeling, my mum was diagnosed in 2004 with early onset dementia. It feels so unfair as even though I was independent and living away from home at the time. I still really needed my mum. So much was happening to me Id just left university and was starting my career. I still felt that my 20's were a time when so much was happening I wanted my mum to be part of. I Felt so bitter at first that it was happening to my mum, now I just feel so sad.
About a year ago I became very panicked that I was forgetting my mum as she was, I plagued my sister and Father daily for information, about things she used to say and do. Its like you get overwhelmed by how the disease has changed them you cant remember how they were.
The occupational therapist who used to see my mum in the early stages of her condition got my mum to make a memory box, so I decided to make one for myself with memories of my mum. Photos, and bits and bobs that reminded me of my mum. My mum has always and still does wear chanel no 5 perfume, so I kept a bottle of that in there. Now I can go to the box and the smell of the perfume brings back memories of my mum from when I was younger

Hope you feel a bit better soon, I stuggled with getting my Dad support and eventually got him to come on here. However I've only just been brave enough myself to join xx

 

[Lauren]

thanks

Thanks for al your messages! they mean alotx

 

[sarah123]

Hi Lauren,

I know it's been a while since you initially posted this but it's been a long time since I visited the site. I just wanted you to know that I understand what you're going through. My mum was diagnosed last Oct/Nov, she turned 56 in December but she hasn't really been "mum" for so many years that I barely remember what she was like. And even though I have the support of other "mother" figures in my life, my aunts (mum's sisters and even my boyfriend's fantasic mum, no one can ever replace your own mother.
I was home on Sunday to visit and as she was talking at me (I say at because I never feel like she talks to me anymore) I just snapped at her (she was talking about something that I very much didn't want to hear) usually I'm patient with her and let her talk but I just couldn't that day & it upset me so much.
So, again, I understand how hard it is as a girl/woman who needs her mum sometimes and she just isn't there anymore.
Sarah
x

 

[lucky]

Hi lauren i was so sad to hear of what you are going through, my mum was diagnosed in January of early onset and seems to be getting worse even though she has started medication now. So i know how you feel my mum is only 59 and i struggle that we don't chat like we use to or go shopping like us girls like.
I like the idea of what someone said about doing a memory box to put all your favourite things of your mum. this is a horrible disease and defintily needs more looking into. i was thinking of doing the memory walk to raise some money, it kind of feels like i'm doing someting to help.

Hope things become a little easier and maybe your dad would use think of using talking point?