Frontotemporal Dementia - anyone else dealing with it?

[Bunpoots]

Welcome to Dementia Talking Point @Suzerella

You have got a lot to deal with! I’m glad you’ve got carers in to help you. I understand the feeling of living someone else’s life instead of ones own. I was like that last year. It was always especially difficult when I was ill.

Feel free to come and rant whenever you feel like it.

Is there any chance you could get emergency respite for your mum to give you chance to recover. You have to look after yourself too.

 

[DesperateofDevon]

Hi, my mum who is now 87 has just been diagnosed with ftd/cbd.
Since diagnosis everything has fallen in to place, I thought mum had turned into an old miserable/selfish/heartless/non emotional old lady,
Mum was diagnosed in hospital in September, sent home, I didn't have a clue about this horrible disease, I wasn't told anything about it, so I went on line, I was totally shocked when I read about it, it was definitely it.
Looking back my mum has had ftd for approx 8-9yrs,
My stepfather passed away 7yrs ago, I have looked after mum ever since, it has been so hard, all the arguments, stress etc etc, I have let mum rule my life, as soon as my sf died she said "stay with me" which I did for months, then I started staying 4nights but there everyday, I really don't know how I haven't had a break down,
Since mum came out of hospital begining Sept I have stayed constantly, although she has carers 4 times a day to change her (as now bed ridden) (cannot do on my own as she had to be rolled, her complete right side of body is dead, her speech has almost gone, & on pureed food & thickened liquids) she relies on me all the time, I have just started leaving her to do shopping, she says "don't be long" & if carers come she constantly asking for me, (we can make out what she is saying) although mum is in bed, she is eating pureed food 3 times a day, cups of tea & couple glass of juice, I am preparing all food, but it is a pain of what to do differently all the time,
She wants the curtains shut constantly, only watches challenge station on TV, all day every day, constantly moaning about something & everything,
I have been ill for a week & a bit, but no sympathy at all, just expects me to carry on, I know it's the horrible ftd, but I really am at the end of my tether, I am neglecting my self, not eating meals just sandwiches, just concentrating on soups etc for mum, I know it's only me that can get myself sorted but it's just feeling guilty all the time for mum, I know I shouldn't but can't shake it off, my children say it's my own fault, but I have to do something as I have days where I resent mum, then I feel worse....
Sorry for all this but need to let it all out,

oh my lovely, you are an amazing person to do what you are doing. Children can be so absorbed in their own lives that sometimes they don’t realise what a parent is going through. I’ve read about befriending services - local churches etc often have them.
I couldn’t do what you are doing, please don’t beat yourself up. Trying to step back is hard, but your mum is like a demanding toddler; & did you let your children dictate when they were toddlers? Be strong for you, sending ((((((((((hugs)))))))))))))

 

[TNJJ]

Hi.I have been looking after dad for 3years. It feels like forever tbh.
He is immobile but not bedridden and has carers 4X a day.
I have had a problem with my knee for years and doctor is deciding what to do when the X-ray comes back.Like you I do the cooking shopping etc but no longer do his personal care.
I have booked him in provisionally for a fortnights respite.Which hopefully he will agree to.
Could you do something like that???

 

[Casbow]

Mum has FTD, diagnosed a week ago, It was a shock but not a surprise.

For the last 4 years she has been exhibiting odd behaviour: hoarding - receipts for everything were stuffed drawers, neglecting the house - no cleaning or stocktaking etc. Being unreasonable at times which was very unusual.

She now acts very childishly - she has the behavioural variant FTD - sings children's songs/talks to God/dead people and thinks she has to go to school in the mornings.
She sleeps a lot now but still runs the bath each night (thank you God!) so at least she is fairly clean. She wears Tena lady pants and has a few urinary accidents most weeks and I have found soiled underwear/nightwear, so the FTD is clearly attacking her brain and changing her.

She is also very rude at times, her behaviour is sexualised - very, very unusual for my once refined mother. She also loves sugary stuff and always wants sweets and cake but she is also overweight and diabetic. She conducts an imaginary orchestra constantly too!

So, I am starting this thread to hopefully hear from others who are dealing with this rarer type of dementia. How are you going/dealing with it. How long is this likely to go on? Mum was diagnosed at 80, not early onset like most others with FTD. Anyone else diagnosed later in life?

Would love to hear your stories and hopefully, share advice and tips to manage this.
Thank you.
Carolyn xx

I have posted on here just a while ago about myself. I write on here under the name of Casbow. I have Frontotemporal and was diagnosed 2 years ago. I would be grateful if you read that. But I wonder if it could be the dementia causing trouble with my family. They don't seem to think it is, But I don't think I have always been bad at saying unsuitable things.

 

[Shedrech]

Hi @Casbow
Just to let you know that this is an old thread, and Cazzita hasn't visited DTP this year so may not be able to reply to this post

 

[Casbow]

I have posted on here just a short while ago about myself. I write under the name of casbow. I have Frontotemporal and was diagnosed 2 years ago.I wonder if it could be the dementia that is causing trouble with my sons. They say I say inappropriate things.

 

[Casbow]

Hi @Casbow
Just to let you know that this is an old thread, and Cazzita hasn't visited DTP this year so may not be able to reply to this post

Sorry I have not been on here for a few years. Lost both my Mum and husband to dementia. Now I have it and I am struggling to get back into knowing what to do. Thankyou.