My mum my world

[Mickyd38]

My mum has just veen diagnosed with cbd over the past 4 yrs ive seen how her life has changed she was always there for me mum and dad are super close i know my dads heart is secretly breakin my mum is indenial to join any network her neurologist has given her this is hard im new to this at the min i do all i can for mum hair ironin diners ect ive give up a good job but mum comes first although she said she doesnt need help yest at diner i saw a grave diff in her eatin ive a knot in my chest thinkin im goin to loose her our whole familys world will fall apart i feel for dad he will never cope without my mum i get angry why is this happenin my mum shes so young at heart shes 63 now is there noway off stoppin this thanks for readin x

[Kaka1234]

My husband has been suffering for 4 years and yes its heartbreaking to watch. He was a very outgoing funny person but has now lost all his spark.

I help him with most things which he finds frustrating as he is only 57 and im 46.

We try and do things together a d sometimes he need encouraging to get motivated. I miss him and us but love him to bits x

[Mickyd38 in reply to Kaka1234]

Thanks for replyin this is devastatin disease how do u cope i try make mum laugh but i miss my mum i really do she is my bestfriend sometimes i feel lost we live in northern ireland x

[Kaka1234 in reply to Mickyd38]

I feel the same as you the person slowly dissapears.

We do laugh and cry.

I try not to let him see me upset but i worry constantly. We hv a 13 year old daughter who is amazing with him.

Get the help pack from the PSPA its amazing to read and helps and explains lots about the changes they are going through and why. I have got close friends and family to read so they understand more.

[Mickyd38 in reply to Kaka1234]

How do u get that

[Kaka1234]

0330 0110 122

Or register online [e-mail]

[Marie_14]

I'm so very sorry to hear your news. It is heartbreaking and sadly there is no cure yet. I say yet because I live in hope they will find a cure and future generations won't have to go through this.

Your Mum is very well loved and although she us unlucky to get this awful condition, she is very lucky to have such love around her. Just keep loving her and caring for her as you do. Even when things get bad she will know you love her. You might not think she will but believe me she will know.

Take care and remember we are always here for you. My husband didn't want to know what would happen so I can understand where she is coming from. She is probably very scared so maybe best not to tell her what the future holds? Best to play it by ear but make sure you know her wishes and get power of attorney in place.

Also think about what aids she will need in the future and talk to her OT and Social Worker. Make sure you take care of yourself and your Dad too. Maybe have some respite? It sounds like you could both do with it.

Marie

[Mickyd38 in reply to Marie_14]

Thanks marie but both off them are so thran she is tryin so hard to prove shes fine but heartbreakin 'xx

[doglington]

Its tragic, Micky. However, what I always say is how important it is to really make the most of how it is now. Make good memories while you can. You may have tears rolling down your cheeks but still have a laugh when you can.

Even now there are still good moments. Treasure them.

The are lucky to have you and you really love them

Love from Jean xx

[Mickyd38 in reply to doglington]

Thanks jean im tryin so hard but thats my plan x

[doglington in reply to Mickyd38]

Good. I'm with you !!!

xxx