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Frontotemporal Dementia

(10 Posts)
jojo144 Tue 20-Jan-15 10:07:15

Hi everyone. I am new to this site but it was recommended to me as a great source of support. My mum (she is 65 and I am 31) has been diagnosed with FT dementia and her decline has been frightening. In under a year she has gone from being at home with me functioning (with support) to having a total mental breakdown and being sectioned. She is now in a residential care home and is so unhappy. She has no insight into her illness and thinks she would be fine living at home. No one involved in her care thinks this is an option due to her anxiety, memory loss and general confusion. Every time I see her she begs me to take her home then gets angry and says I have abandoned her. The stress of dealing with it all is getting to me and I wondered if anyone has experienced this or something similar and can offer any advice of what I can do to help my mum settle into the care home (this is probably wishful thinking) and support her. Thanks.

ShotgunNotDoingThePans Tue 20-Jan-15 20:05:11

Sorry to hear you're having such a difficult time. Sometimes it gets busier here in the evenings; hopefully someone will see it who is able to offer advice smile.

jojo144 Tue 20-Jan-15 20:37:23

Thanks for the reply. Hoping that someone has some advice for me so will keep an eye out. smile

KittyOSullivanKrauss Tue 20-Jan-15 21:02:53

Hello. My mum had FTD. She was at home for far too long with my Dad caring for her and eventually sectioned and then into a care home. She died last year, but of heart failure not the FTD. It was a relief to be honest because her quality of life was awful & she was miserable.

We were very similar ages to you and your Mum. She was diagnosed when DC1 was a toddler, and I had DC2 just before she was sectioned. It is so hard to have small DC at the same time, and it will wear you down very quickly. The thing I found most helpful was to constantly remind myself that my children needed me to be sane, so I was careful about frequency of visits, put them first and sought support from DH ( him to come with me if I was finding it too much, he's a calming presence in a crisis). My Dad, brother and I were supportive of each other.

If you're worried about her settling then do speak with the manager of the care home and consider whether a referral to the older people CMHT is warranted. There is also a Pick's disease support group that my Dad joined. I'm not sure if they're national but I think they might be. I was lucky because I work in a related field in the NHS so this helped me negotiate the system. Is your mum CHC funded?

Oliver James has a book 'contented dementia'. Much more geared to Alzheimer's but parts might be useful you. Researchers think that some types of FTD can be very rapidly progressing so it might be that this is the case for your Mum. If you are academically inclined John Hodges is the leading expert and has a few books on the subject.

You have my sympathies. It's a fucking hideous disease and is poorly understood because it's rare. brewthanks

jojo144 Tue 20-Jan-15 21:49:36

Hi Kitty

Fucking hideous is exactly how I would describe this. The doctors have said she has rapidly progressing FTD - in the space of 10 months she went from being at home with me (undiagnosed) to being sectioned and now in a care home. She hates it and is so sad. I just sat with her for an hour as she cried and begged to come home. I work full time and have no way of caring for her at home.

She is under S.117 of the mental health act so her care is being paid for by the council. I am doing daily battle with them to get her a higher level of support as she is suffering with hearing voices, anxiety and fear. She broke out of the care home over christmas. But she's safe there now they are watching over her 24/7.

I'll look up the books/authors you've mentioned as you're so right to say that it's a poorly understood illness. The older adults mental health team and her doctors don't know enough about it and they are meant to be the experts!

One day at a time. I'm so sorry for your loss although I do fully understand the relief it must bring. My mum is so unhappy and declining so rapidly that if they can't improve her quality of life (she has none at the moment) I don't want her to live like this for years and years :-(

Thanks for your message x

KittyOSullivanKrauss Wed 21-Jan-15 22:33:44

That does sound a quick progression. My mum was much slower but a stroke & heart disease intervened. If your mum is social care funded I'm surprised they haven't asked about CHC. This is Continuing Healthcare funding, so means the bill gets passed to health. I don't know whether this would make a difference to your current concerns but it might do if the home is putting in a level of support that is beyond what they're actually resourced to do. This is often the case when people challenge, sadly.

Sounds like you've been dealing with a lot if she was at home with you. My Dad looked 20 years older after my mum was sectioned. I've found the support group website. I've forgotten how to link on the iPad but you can copy & paste into your browser:

my mum used to ask to go home, or tell me she was going. I used to just reflect it back to her " you want to go home", and didn't get into a debate about why she couldn't. She was very aware of where she was so you couldn't go along with it like you might for someone with Alzheimer's (where you say "ok, let's go", then get your coats, go for a walk and then come back for a cup of tea - you might be able to do this once her short term memory is shot).

It is very tough, but if this is any comfort my mum died last April, and since then the memories of her with FTD have faded and I think about her much more as she really was. It is hard to remember the real person when they're in the grip of this.
One other thing is that I did a photo life story book for my mum when she was in care, partly for her orientation, and to use as a talking point with staff, but also for me to help me hold on to who she really was.

Best of luck with everything. I'll check back here again in the next day or so.

Lapsang Thu 05-Feb-15 13:46:45

I am not really able to help as I am not nearly as far along this road as you, but wanted to offer some sympathy. My mum was diagnosed with FTD 3 years ago, at the age of 65 but so far the progression seems to be steady. She is still living at home with my dad caring for her, but can do a lot independently even though she does get extremely confused.

It sounds as though you have been through a terrible time, and also that you are doing an amazing job. I do wish you all the very best and hope that you do manage to get some more support.

jojo144 Thu 05-Feb-15 14:23:56

Firstly Kitty thank you for your message which I have only just seen. Not very good at keeping up with this!

I have found that support group and I am going to their annual seminar next month in a bid to learn more. They have been very kind so far. Two people yesterday commented on how tired and stressed I look so I think I can admit that I look a lot older now!

I'm currently doing battle with the CCG for further funding. She needs one to one care to stimulate and support her. As she is only 65 she should be helped to do things suitable to her age range. So a trip to the shops or a cup of tea in Costa or something. But at the moment she is just stuck in a care home with not enough support. That alone is killing me.

Her short term memory is on the way out now so the tips I've had from people dealing with a loved one who has Alzheimer's will soon become relevant. But at the moment I just do as you say, agree with her and try to change the subject. There is no point arguing.

I am in this weird limbo of grieving for her when she hasn't died. Everyone says remember who she was and all I can think is she hates me (she tells me this a lot at the moment as she blames me for being in the care home). It does comfort me to think that when she dies I might be able to go back to remembering my mum as she was.

Lapsang hello and thank you for your message. This road has been approx. 8 years for me but until recently I didn't know what exactly was wrong with her. My mum's progression was steady until Feb 2014 when she effectively become unable to cope any longer and just completely dropped off. She's now got no capacity and is slipping away on a daily basis. According to her new consultant this is quite common with FTD especially in younger people (65 is young on this scale).

Sending you and your family lots of love as I know what you are going through xx

Beaaware Fri 13-Feb-15 23:25:38

Absolutely 65 is very young I would question the diagnosis and ask for other neurological blood tests to be carried out to rule out exposure to other factors such as diet related. How is her balance?

jojo144 Sat 14-Feb-15 17:17:59

FTD happens to people aged 40-65 so it's not young on that scale. She's had assessments by 5 doctors or consultants and every blood test/scan/test available. The SPECT and MRI scans show the damage to her frontal lobes and her symptoms support this. They won't be sure until they do an autopsy but sadly I don't think they have her diagnosis wrong.

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