Frontotemporal Dementia - anyone else dealing with it?

Discussion in 'I care for a person with dementia' started by Cazzita, Aug 4, 2018.

  1. sford91

    sford91 Registered User

    Nov 4, 2015
    112
    Hi Cazzita

    My mum has frontal lobe dementia she was diagnosed 3 years ago when she was 56 ( nearly 57) and is 60 in September. Mum deteriorated really quite quickly and it was heart breaking, but mum used to have a massive sweet tooth and used to stuff her face day and night and when she went into care last February she was probably about 18 stone maybe heavier she now weighs about 11 and half and is the shell of her former self this is because the care home and control her food and she was more active pacing around up until about 3 months ago, mum mobility is very poor and she is now non communicative which is really hard however she has alot of facicial expressions and 9/10 we know when she is happy/ sad. Putting mum into a care home was one of the hardest things I have ever had to do I was 25 and my sister 23 it was awful. But mum always said I want you girls to live your lives and be my daughters and not my carers. Mum had part in picking the care home before she deteriorated to far. This illness is cruel awful and I wouldn' wish it on anybody. I tend to keep alot of my thoughts to myself other than post about them on here but I feel it is easier to keep it that way for now. look after yourself x
     
  2. Cazzita

    Cazzita Registered User

    May 12, 2018
    478

    How absolutely heartbreaking for you girls, and your mum. To have this awful disease is bad enough for my mum at 81 (first signs about 76) but for yours in her late 50s, just terrible.
    Thanks so much for responding. I will try not to worry too much about this weight loss yet as it's not too much and she does need to lose weight!
    Take care of yourself too. Right now, I am exhausted and want to cry and run away but hopefully, once I start work next week, I can pull yself together but right now, I can't see that!
    Thanks again.
    Carolyn xx
     
  3. Ernest

    Ernest Registered User

    Jan 23, 2018
    77
     
  4. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    1,574
    Female
    Auckland...... New Zealand
    We find out in the coming weeks if Dad 80 has in fact got FTD as he was reassesed by our memory team yesterday.
    4 yrs ago it was a cognitive impairment diagnosis.
    Dad is an ex boxer so to us he has always showed a level of cognitive impairment/FTD aspects.
    He did National Service in the Army, and went through the ranks before resigning and emmigrating to New Zealand with my Mum in the 60's, so he must have passed all physical/mental tests to enlist?

    My Mum has Alzheimer and has been in care 2 yrs.
    Apart from Dads memory being hazy on dates & places / peoples names & faces, his short term memory is still reasonable given his age. He repeats stories but not in the space of minutes.
    Its Dads reasoning, judgement, not understanding consequences of actions, hygiene, lack of emotion, apathy, lack of initiative, social behaviors, which is getting worse.
    We have had a few incidents lately, one involving the Police.

    Dad denies and lies his way out of things, so it never makes him look in the wrong or in a negative light. He will tell you what you want to hear.

    I am finding this all infinitely harder than mums Alzheimer's.
     
  5. sford91

    sford91 Registered User

    Nov 4, 2015
    112
    I find work such a distraction and gives me the structure that I need in my day if that makes sense and really helps. I work as mental health nurse, and find it weird how I see both sides of it. Be kind to yourself. I hope your mum is okay and the careers help, ours really helped. Keep people updated xx
     
  6. Cazzita

    Cazzita Registered User

    May 12, 2018
    478
    Thanks for this as I am already feeling guilty about going to work but the thought of having another focus will be great! Especially as my dear mum went out with her carer this morning, left her upstairs sink running and we only realised 30 mins later when water was pouring through the (brand new) kithen ceiling.... It's one thing after another and I can barely breathe! So, a house full of plumbers, builders etc yet again. Feel like running away - very far away!
     
  7. Cazzita

    Cazzita Registered User

    May 12, 2018
    478
    @sford91 , don't forget to look after yourself too! I know what you mean about keeping quiet sometimes. Everything just seems like too much effort. So, take care xxxx
     
  8. Cazzita

    Cazzita Registered User

    May 12, 2018
    478
    Thanks so much @Ernest, I am not looking forward to it as feel more and more stressed but hopefully, the training days on Tuesday and Wednesday will get me fired up! Hope all okay with you too xx
     
  9. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    441
    @Cazzita, sounds like you've got a lot on. I always enjoyed the return to school and getting back into a routine, but it's sounding like you need to be in two places at once!
     
  10. Cazzita

    Cazzita Registered User

    May 12, 2018
    478
    I know @Sarasa, we all need to clone ourselves and I need 2 versions at the moment to keep going! It's all a madness! Hope all okay with you xxx
     
  11. Muggles

    Muggles New member

    Jan 20, 2019
    9
    Hi, my mum also has FTD, diagnosed at 60 and now almost 65. My sister and I struggle being her carers and sadly she’s going to have to move into a care home in April as she’s becoming a risk to herself wondering. It’s such a hard, sad illness and I am drained. Mums really deteriorated the past few months.. does anyone have any experience of the stages and when you know that it’s more advanced? Mum is now incontinent, struggles with her speech but still mobile and able to eat and drink fine.
     
  12. Cazzita

    Cazzita Registered User

    May 12, 2018
    478
    It's really tough isn't it? My mum is also incontinent but speech is perfectly fine and can eat and drink fine too. But her memory is appalling and her behaviour inappropriate with no empathy or understanding about anyone's feelings.
    I guess we will know when it is more advanced - when it gets even worse - but it is horrible waiting for that to happen. Take care along the way x
     
  13. Muggles

    Muggles New member

    Jan 20, 2019
    9
    Hey, thanks for your message. Mums the same with the inappropriate behaviour and no empathy. But she’s very sweet and not at all aggressive with it. How long has your mum been diagnosed for?
     
  14. gladiola

    gladiola New member

    Jan 3, 2019
    8
    Yes a horrible disease, my husband was diagnosed with bv/ftd several years ago after several brain scans and many appointments. He was good at hiding his symptoms but would get very angry when I tried to explain the difficulties we had from day to day. He is in complete denial of any form of dementia, just hearing the word is enough to set him off on one of his rants. But although physically strong this disease has now affected his posture and his walking, small steps and slow, sometimes a shuffle, also getting very stooped over. My biggest problem is the way he approaches complete strangers in the street telling them to pick up their litter or dog mess or whatever has caught his attention. In shops he tells other customers what not to buy because he has tried that item and its no good. His unwanted advice includes any workmen, any dog walkers, any noisy young people and anyone who doesn't park their car "correctly". I have learned to walk away a short distance unless things get heated, but I can't explain that he has dementia, he doesn't believe it and thinks that I am being disloyal. I have difficulty getting him to shower or change his clothes, he is obsessive about his routine, sudden mood swings are sometimes frightening for me but so far its only verbal. Before this disease he was mild mannered and didn't use bad language but the opposite is the case now. There are times when he can keep up a good front and other people just don't understand that he has a progressive illness. I could go on about the hoarding, the sweet eating, the constant finger flicking, the lack of empathy and the downright rudeness at times. But still he does try to keep going as best he can and I admire him for that. There is a lack of understanding in general about the various dementias, they are not all simply a gradual loss of memory although there is nothing simple about that either. There is no rule book to guide us through this but there is a lot to learn. Stay strong, look after yourself, accept help when offered. Best wishes.
     
  15. Cazzita

    Cazzita Registered User

    May 12, 2018
    478
    Hi Muggles, Mum was diagnosed in July last year although it took a whole year! They said it was depression and we knew it was way more than that as very odd behaviour. I think she has had it few years though.
     
  16. climbeverymount

    climbeverymount Registered User

    Feb 22, 2017
    3
    East Devon
    Hello, I'm new here and saw your post. I could have written the same things about a man I care for. He is not my husband but I've known him for 18 years so we have got very close. Unfortunately he has no relatives and very few friends, so my friendship has now turned into the role of carer. I try to make space for me and have just started a new regime where I see him every other day, instead of every day. He is very needy and often acts as though he wants to kiss me but then cuts off suddenly. My biggest task is trying to educate people about FLD as most people are surprised that he has a good memory!! I am just starting a course on vision2learn about dementia to give me something positive to focus on and know that I'm not going quite mad. It is pretty lonely and also BORING being with him for so many hours a week.He also fiercely denies he has dementia, and is getting really slow and tripping. his speech is very mumbled too, and I often get frustrated that I can't understand what he says. We go abroad quite a lot as he loves travel, but I'm beginning to worry that his inappropriate behaviour may get worse in strange places. Take care and stay strong.
     
  17. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,416
    Male
    Cornwall
    Hi Climbeverymount just reading your take on your friends FLD and was delighted to see where you said {My biggest task is trying to educate people about FLD as most people are surprised that he has a good memory!! } I myself have FLD diagnosed in 2003 after have been at first diagnosed with Alzheimer’s in 1999 and yes after 20 years and my long term memory is good ok have problems with the short term memory but so have most people my age , you also said { his speech is very mumbled too, and I often get frustrated that I can't understand what he says } well yes unfortunatelyI have a similar problem the words seem to get lost between my brain and verbal speech and thats frustrating for me so I end swearing quite a bit,, finally you said { We go abroad quite a lot as he loves travel } once again I holiday abroad twice a year if I can afford it maybe three times I always hire a car and drive in Spain no problems so in my opinion your friend is doing fine remember we only come this way once so make most of it

    ps any mistakes blame the FLD :):)
     
  18. climbeverymount

    climbeverymount Registered User

    Feb 22, 2017
    3
    East Devon
    Hi Countryboy, nice to meet you here. Hope the problems you experience are tolerated and understood by your friends and family. As you say, life is too short not to be fully lived! ENJOY!!
     
  19. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,416
    Male
    Cornwall
    #39 Countryboy, Jan 25, 2019
    Last edited: Jan 26, 2019
    Hi Climbeverymount thanks for the reply I definitely had a few experiences since my diagnoses and got into more battles with bureaucrats probably more battles than Field Marshal Montgomery not sure they were always understood or even tolerated but in order to continue in my employment , dvla to retain my Driving Licence they were important battles that I had to win, to live a normal life, I was fortunate to have excellent support from NHS Cornwall Partnership the Occupational Therapists and of course my Wife Son Daughter and close work colleagues & friends with their support I did continue working until my retirement age then 65 and I fought to get my 1 year driving licence reinstated to a Full Licence and I do enjoy a good scrap :):),

    I also have great support from the Alzheimer’s society. in past years 2008-12 they were the good old days unfortunately now there’s to much data protection nonsense :(:(

    Hope you maintain your positive attitude for many years to come
     

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