Frontotemporal Dementia - is anyone caring for someone who has this type of dementia?

[Rosiejones]

Hi Everyone,

My mum has sadly been diagnosed with fronto-temporal dementia at 62 years old. She started showing signs of depression a few years ago, wanting to go to her room and sleep at variable times of the day. Since then, she has deteriorated rapidly, changing from a glamorous mother, who wore beautiful clothes, perfume and make-up, to someone I barely recognise. Although her memory is still fairly good, she has changed in really unusual ways. She bites her fist a lot and makes really unusual faces, she sings in an operatic way at times. She can be hyper-sexual and talks about sex sometimes when at other times she can be very childlike and 'steals' chocolate from the cupboards. She is incontinent but doesn't clear it up and we have to remind her to wash herself.

She's just a very different person and over the last couple of years, I have had to grieve for the mother I once had and deal with the mother I have now.

I live and work in London and go home to see my Mum and Dad every two weeks at the moment. This gives my Dad someone else to talk to and a bit of company for them both.

I am in my early thirties and to lose your mum at this age is heartbreaking, I haven't got married or had children of my own, so I just feel really alone in dealing with this situation.

I love my mum so much and will do anything to help her, but every time I see her I just feel she is slipping away from me.

Does anyone else know anyone suffering with this type of dementia? It's quite different to Alzheimer's and it would be lovely to hear from people going through something similar.

x

 

[canary]

HI, my mum has AD, not frontotemperal, but you sound so lost and sad that I couldnt just run. I think you need a ((((hug))))).
With all dementia we are loosing our loved ones, but I believe it happens much quicker with FTD, so you must be in shock.
I hope that bumping this up will make others see it.

 

[tre]

Hi Rosie,
my husband has one of the rarer dementias (PCA). I assume you are aware of the excellent support groups available at UCL in London as you are based in London. However, just in case you are not here is the link
http://www.ucl.ac.uk/drc/support-groups
Tre

 

[dede5177]

Hi my mom has combined dementia found through a brain scan, not read much on the different types I am her main carer as unmarried without children, though I do have another life in the north of England when I can get back to it.

As moms main carer I take her to the Dr regularly and the main thing I ask for is for mom to have the best quality of life she can while she is here with us. That means treating symptoms I would ask in your shoes if the Dr thinks the hand biting, face pulling and lack of interest in her personal care clothing choices etc. can be treated with something to relieve stress/ tension/anxiety to make mom more happy in her own head.

I would ask dad to keep a diary of what he has to do, is mom up in the night, can she still wash or dress herself does she complain of headaches nausea is it after food at night when? Only keep the diary for a week before going to Dr as you don't want to sink under the weight of what's happening. The GP often asks is I m getting enough support as this condition is very wearing for carers so can your dad have short respite care just an afternoon to see his old mates or time with the boys.

My mom goes out more in summer and still enjoys a tea dance just an hour out in the evening was the highlight of her week, dancing she loved when she was younger and the lessons we went to only lasted an hour at the local school and as there were only 15 in the class and not much time for talking it gave her something to concentrate on.
people are very kind in small groups is their a community café you can go to find other activities earlier in her dementia she enjoyed singing for the brain - for dementia sufferers but the journey to the centre is too much for her now but it would get mom and dad out for a little while and the sessions were fun.

 

[kingybell]

Hi my mil has combined dementia and FTD is one of them. She is very childish and uses childish voices when faced with people in authority. She's 56 years old and up until about 2 years ago was looking after my daughter then 3 whilst I travelled abroad for work.

It is incredibly frustrating and she gorges on massive amounts of sweets and chocolates. She still puts Her make up on but wears the same clothes every day.
She is not interested in anything at all and her favourite word is 'boring' ( said in a childish way). She only wants to play with the grand kids but they love her.
Her short term memory is non existent but she can still manage to cook and clean.
I have found some very sexualised statements written by her in a book. I suspected she may have had a boyfriend but think it's just things she writes down as she thinks them.
It is very odd and I am constantly explaining to people in public why she seems a bit strange. I caught 2 mums at my daughters school sniggering at her last week. They soon stopped when I explained.
We live in a village so I have let all the local shop keepers know the situation and the pharmacist who has been great at helping us.

We have started just to have a laugh with her and appeal to her new childish nature and just live in the moment. It's so sad but enjoy the moments you you can.

 

[nrs02]

My mother has FTD and sounds a lot like your mother. Shes in her early 60's. In 2001 she had depression and had a very difficult time coming out of that. In 2006 she was acting very strange, she was so rude to me that i told her i didnt want to speak with her until she got help because something was wrong. A year later she was told she had dementia. I do not live very close to her and go home once every 3 or 4 years. Its been difficult to come to terms with this. Last time i was home was 2012 and she was different but still could function. In the last couple months shes went down hill fast from what my sister tells me. I speak to her on the phone and she doesnt even sound like herself anymore.

My sister said shes recently started yelling at nothing and then punching herself. She will be moving into a nursing home tomorrow because my father needs to work and has no one to watch her.

I'm 30 and feel so sad/angry that I have to deal with this right now. This isnt supposed to happen and more than anything im wondering if im going to get this as well. I do have kids and it kills me thinking about them seeing me go through what my mom is going through.

I'm flying home soon so i can see her one more time before she completely forgets who i am.

Even though its been years that we have known she had this horrible thing, its still hard to come to terms with. I mean she was fine for so long (well for the most part) and now its all happening so fast. I worry a lot about how much time she has left and i hate that i didnt go home enough and now time is slipping away.

 

[ElleSH]

I've been visiting these forums for a while but your post prompted me to finally join.

I'm in a similar situation – my mum (65) was eventually diagnosed with frontotemporal dementia last year, after nearly 2 years of us knowing something was very wrong. She was originally diagnosed with depression / anxiety and it took a combined effort from myself, my grandfather and my uncle to get her doctor to consider an alternative diagnosis.

Mum has unfortunately deteriorated rapidly and entered a care home at the end of last year. Prior to that she was living with my grandfather (supposedly as his carer!). I'm 31 years old, with no partner, or children. I work full time and live over an hour away from mum. I'm also an only child and my parents are divorced, so I feel very isolated in dealing with things (my uncles involvement has been mainly focused on helping my grandfather).

I have POA for mum and have found dealing with the financial side of things an absolute nightmare – mum got herself into fairly serious debt (mostly on credit cards) in a short space of time, before I received POA and could intervene. It feels like a constant battle to get people to acknowledge the situation (much less attempt to understand it!) and I've had companies try to refuse to even accept the POA. Now I'm trying to make sense of the financial assessment and care home fees….

Mum hasn't settled well at all in the home and has recently become increasingly aggressive – they called me again yesterday to report that she had hit another resident (this is the second time now). I’m terrified the home will say she cannot stay there if this continues.

I miss and grieve for the mum I knew so much. She was my rock and I so want to be able to return that care and support but feel so overwhelmed by everything. I'm planning to make an appointment with my own GP next week to discuss what counselling services are available – it's taken me a while to accept but ultimately I can't help mum if I don't help myself first.

This disease truly is a nightmare and you – and everyone else here - have my sympathy and empathy.

 

[briana]

hi

hi rosie
my hubby was diagnosed with this back in 2010, although showed symptoms for a few years before, It came as a surprise as he was being treated for depression as many patients are initially, the first few months after his brain scan (significant brain atrophy) I was in total shock and just couldn't accept it. the symptom's can be awful and change rapidly, Hubby was aggressive, would hoard food (not good he,s diabetic) if he didn't understand or get his own way he could be violent and break things in the house, now he has periods where he forgets, and cannot understand some simple basic meanings, after trial and error and a fantastic medical support team he finally has good meds that stabilise him, my heart goes out to you it can be rough coming to terms with it. I do find this forum I godsend especially early hours of the morning when hubbys having a bad night and I need to "talk" to someone, also there are support worker that visit you who are attached to the Alzheimer's society give them a ring they are my life line when things get tough. If you need anymore info etc. I will try and be as helpful as possible, x bb

 

[Beaky144]

Hi Rosie

You have my total sympathy. I am 31 and my mum is 65 and has been diagnosed with FTD for a year but has been suffering from it for at least 7 years (hindsight is a wonderful thing).

I live alone and work full time in London and feel very alone. My mum was my best friend and we spent a lot of time together. Now when I see her she sometimes doesn't know who I am, sometimes is very aggressive and accuses me of 'dumping' her in a care home for my convenience and sometimes cannot even communicate with me at all. This uncertainty of what I will find when I visit is heartbreaking every time. As my mum has got worse and this horrible disease has worsened I feel like I am watching her slip further and further away. It's very cruel.

ElleSH I have similar experience with the POA. Her bank have been incredibly useless and the slow process needed each time I register it with an organisation is painful. The only people who were beyond kind and helpful were my local council tax office! If you need any help with anything please message me as I have battled the council to get them to pay for my mum's care and then again to get additional funding for one to one support and won. I argued that as medication hadn't worked social care was needed and she is now taken out for 2-3 hours a day to swimming, keep fit, singing for the brain, shopping, coffee and nail appointments. Costs me more money and she rarely remembers it but in the moment she has a better quality of life and that was my aim. I have been going to counselling as well as I struggle to come to terms with this. I also don't sleep well so am considering the path of anti depressants to help me (I can say with certainty that I am depressed). If you need someone to talk to ever I have a good ear.

Jo xx

 

[EmmaThrace]

Hi,

I can completely sympathize with your situations.
My father was 49 when he passed away from Pick's disease. He had this for 7 years.
I wrote a blog which i found very therapeutic and which also helped to raise awareness for the rarity of the disease.
Some of these instances you all talk about resonate quite well with myself and I tell those stories within the website.

My heart goes out to you and your families.

 

[magicpink]

Hi Rosie,

I too am called Rosie and my father was diagnosed with front temporal dementia in September, he has deteriorated very rapidly and is now in an assessment centre waiting for a care home place. he will never come home again. I am trekking the grand canyon in march to raise money because I cannot think of anything else I can do and I must do something. My dad is gone he is not there any more.

Rosie

 

[Jools71]

Hi, everyone
My Husband has just been diagnosed with FTD (Picks Disease) he's 51 years old. To say I'm hurting is an understatement. I've lost my husband he's now like a child, gorges on food, his behaviour can be challenging at times. I haven't contacted any local support groups yet, i still feel like I'm in a bubble.
I'm just looking for any advice from people who understand how I am feeling
Thank you

 

[kingybell]

I would say get as much support as you can.
Our way of dealing with it is to tell everyone (the Terry Pratchett theory) and have fun.

My mum in law acts like a child and is 56, she says inappropriate things to strangers, she thinks everything is boring unless it involves children and playing games and eating sweets.

I found the more people I told the less embarrassing it is. They actually are more willi g to help. She is not the same person but still wants to be loved and we always make her feel special.

 

[kathleenr]

My hubby has alzheimers with fronto temporal characteristics so i can relate to many of these comments. I set up my own support group (in north liverpool) as there wasnt one for us younger carers, its been a Godsend and helped me fight for the best care we can get. A gardening for dementia day centre is fabulous, giving us both a break, singing and music also helps. Get all the help you can, thinking of you all as we try to get the best quality of life for both carer and cared for.

 

[Cazzita]

Keen to bump up this post as my mum now has FTD. Any posters on this thread able to update on how your PWD has been over the last couple of years? Thank you

 

[Izzy]

@Cazzita - I've had a quick look and most of the members who contributed to this thread have not visited Talking Point since 2015/2016. I don't think it's likely they will see your post. I wondered if it might be better for you to start a new thread of your own on FTD. I'm sure there are current members who are living with this form of dementia and I'm sure you would get responses.

 

[Cazzita]

@Cazzita - I've had a quick look and most of the members who contributed to this thread have not visited Talking Point since 2015/2016. I don't think it's likely they will see your post. I wondered if it might be better for you to start a new thread of your own on FTD. I'm sure there are current members who are living with this form of dementia and I'm sure you would get responses.

 

[Cazzita]

@Cazzita - I've had a quick look and most of the members who contributed to this thread have not visited Talking Point since 2015/2016. I don't think it's likely they will see your post. I wondered if it might be better for you to start a new thread of your own on FTD. I'm sure there are current members who are living with this form of dementia and I'm sure you would get responses.

Okay @Izzy , that might be a good idea. Thank you xx

 

[PJ]

Okay @Izzy , that might be a good idea. Thank you xx

@Cazzita Ive just been reading your post. I was diagnosed after almost 3yrs of tests withFTD the behaviour type. If I can be of any help I’m more than happy to talk.
All the best

 

[Izzy]

@Cazzita Ive just been reading your post. I was diagnosed after almost 3yrs of tests withFTD the behaviour type. If I can be of any help I’m more than happy to talk.
All the best

Cazzita has a thread here - https://forum.alzheimers.org.uk/threads/frontotemporal-dementia-anyone-else-dealing-with-it.110795/