im only 23 and my mum has FTD, help please!!!

[rimmel11]

evening all.....
i'm new to this as I thought I could deal with everything on my own, and as im sure you all know its sometime difficult to ask for help, my mum has FTD, well its not diagnosed officially yet but she is in the middle stages and its just because the nhs dont see the urgency, but perhaps neither do i, do you really need to hear something you already know to make it real? Anyway im 23 and my mum is 55, my parents are divorced and so my dad is not in the picture, i have two slightly older brothers but i guess they deal with it by not being around and i guess everyone has their own way of dealing with the grief. like everyone i have good days and bad, i recently brought a book called "What if its not Alzheimer's?" which has been an eye opener and basically amazing and i know it will be my source of help and understanding through this process....

so anyway what i would like to know is has anyone come across any good activity books, mum has a huge problem with words which is a big part of the condition, like she calls the grass in the garden the carpet or doesnt even know basics like a knife and a fork. I have thought about making one with velcro labels for objects so she can practise putting the right name on the object as she still has the ability to retain new information. I've had a look and i can't find anything which seems strange (perhaps a huge gap in the market-maybe an opportunity for when i havent got enough on my shoulders!) but i dont want a childrens picture dictionary i dont want to patronise her, be she will learn a word like wasp and just write it over and over in a list, but without a picture it seems a bit pointless, any suggestions????

my mum also loves to dance, she calls it 'exercise' i find it really embarrassing and i know i shouldnt, but she literally is having an excessive workout in front of strangers, jogging on the spot...its like mr motivator on drugs!!! anyone experienced this, or something similar, any suggestions other than just swallow my pride?

its a horrible situation when you have just realised your mum is ur best friend, only to have her dissappear in front of you, and when you land the dream job you have worked so hard for she barely raises and eyebrow or even the mention of me moving out angers her and she lays on this guilt-trip that i will be leaving her all alone, ahh sometimes its just hard not to feel trapped.....

anyway sorry for the ramble but the first post is always the longest i guess and apologises in advance for any poor grammar or spelling!!!
i look forward to hearing some suggestions
katie
x

[Helen33]

Welcome to Talking Point. My husband has FTD and I feel that life is far from over but distinctly changed This response is rather short because I am in a rush this evening but I would like to say that I believe that an early referral to a speech and language therapist, specialised in dealing with people with dementia, could be just the help you are looking for. I am working with one at the moment and she has been able to assess my husband and help me find ways of helping changed communication. I wasn't told about speech and language therapy and so I googled our local hospitals and eventually found a name and address and self-referred sending copies of my referral letter to the GP and the Psychogeriatrician.

I hope that you find Talking Point a source of good support, information and friendliness and I will look forward to seeing you around the site.

Love

[zahida]

Hi katie,

Sorry to hear your mum got FTD...i was 25 when my dad was diagnosed with ftd..one of the worst day of my life..its been 4 years now..we have had really bad days and some good days..i suppose u get used to it..my dad was 54 when he was diagnosed..it was really hard at times we had no support from family eg my brothers my sister was heavily pregnant and we were just in and out of hospital..it drained us out..best way to get support is your admiral nurse..and she can send you into right directions..if you havnt got admiral nurse ask your gp or district nurse..admiral nurse will come out and have a chat..my dad used to have problem with flem so he used to spit anywhere and public out there not very nice..but i use to keep quiet but it used to hurt people not saying nice things..but now ive got used to it..there are days when he gets really loud..the whole street can hear him and neighbours call my mum to ask if everything ok..past 6mnths he been very quiet and now he doesnt allow carer to shower him etc..he gets aggresive..then my mum comes to rescue..the carers are afraid of him now that their manager has said if we could get phyciatric to see him..its like they are tring to say he's mad..all it is he doesnt like any1 to do anything for him apart from my mum..he also has hallucinations..
just be strong try not to think negative..their will be days when it will get you down..if u have a partner have a good cry o their shoulder it really helps..especially in the initial beggining will be where the demntia will kick in and some days it wont be as bad...