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5887915 tn?1383382380

Frontotemporal Dementia

My mum has been diagnosed with Frontotemporal Dementia (FTD) & I was wondering if anyone else has experience with this form of dementia? Thanks in advance.

6 Responses
Avatar universal
Hi Karen,
my father has been diagnosed with ftd. Im 26 and i have part time care for my best friend, my dad. My dad was diagnosed 3 years ago but he had been suffering for years prior. I would love to chat more, if you have any questions? Its very hard to find people who have experienced this as family/carers and who understand THIS type of dementia.
Thinking of you and your mum, family and friends.
Avatar universal
Sorry, auto correct. **
5887915 tn?1383382380
Hi there,

Thanks for your answer to my post. I only just noticed your reply as I had sort of given up as I originally posted in August.

If you would like to send me a private message to chat or I can send you one if you let me know.

It is a very difficult condition to see a family member go through and I try to help as much as I can but I live with MS and Rheumatoid arthritis so it limits how much I can do. My father is my mums full time carer and I can see the toll it's taking on him.

If I don't hear back from you in a week I will send you a PM.

Take Care,

Avatar universal
My father just passed away in November from FTD.  It is extremely hard to watch a parent go thru that.  If you don't mind, what stage is your mom at? As far as behavior or physical.
5887915 tn?1383382380
Hi there, apologies for the late reply but I've been in a Rehab hospital with my MS for a while and didn't get your message. I'm really sorry about your dad and I can only imagine how hard it has been for you. My mum has progressed a lot in the last month since I've been in hospital but she is still pretty good all up I guess. She was only dx in July last year but has had symptoms for a few years now. Her father had the same in his early 50's but he was dx in 1979/1980 & was labelled with Alzheimer's but it's clear now that was not what he had. He predominantly had behavioural problems and was quite aggressive as he progressed. He passed away from cancer in the end.

Mum sits in front of the TV a lot and doesn't want to do much at all really so my dad takes her out for a while most days. She's started to get quite anxious lately and is clenching her fists all the time so badly she digs her nails into her palms but she also has clapped in certain rythmic ways for about a year now which usually indicates anxiety or excitement. She has had a couple of panic attacks in the last few weeks as well which is quite the opposite of my mum normally. She can get verbally aggressive but much less than 6 months ago.

I don't think she is understanding spoken language fully now and has had trouble with written information for a couple of years now. My dad does all of the cooking and cleaning now and mum really wouldn't eat or drink if my dad didn't prompt her. She will only eat sweet stuff for lunch now which we are trying to incorporate healthier sweet foods like fresh fruits in that meal but she does eat a normal meal in the evening. It's a constant battle with the sweet food.

On the physical side I can see that her walking has rapidly deteriorated and she can't do a lot of what she physically used to. She has not shown any signs on motor neuron disease / ALS yet so that is a definite good thing. I think much of her physical skills have deteriorated because of her mental functioning and processing of how to do a certain skill now. She has started to have strange toileting habbits in that she leaves doors open & pulls her undergarments off before she anywhere near the bathroom. She needs prompting to wash her hands as well. I am pretty familiar with these types of dementia habbits as I used to care for my nan and worked in the industry many years ago.

I don't live with mum and dad but when I visit it is a fairly tense environment as mum speaks badly to dad (primary carer) but she tends to be a bit better with me but I'm only visiting. It's a hard situation because I have rheumatoid arthritis and MS so I am limited in what I can do to help. I live alone but have some assistance from carers so if my mum spends time here with me I find it hard to care for myself let alone my mum...this leaves me with big time guilt issues.

My dad won't except outside help just yet but I keep asking him. This is where he wants my mum to spend periods of time (half days) alone with me & for me to go out with her but it's too difficult when I'm in a wheelchair or gofer in a shopping centre and she will just walk off and I can't keep up. I don't have the leg power to chase my mum and I know something bad will happen soon. Don't get me wrong I want to spend time with my mum though as she has been my whole life and was my primary carer. I think if my dad had some help to give him a break then he will fair much better but he won't do that.

It is heart breaking and I know we have only just started this journey as well. Please send me a PM if you like & again I'm so sorry about your dad.

Avatar universal
Hi Karry,
My dad was diagnosed about 3 years prior to his passing.  I'd say about six years ago when I would visit him it seemed as tho he was always repeating things he said, I thought it was odd and thought he seemed to have early signs of Alzheimer's,  he then stTed to cause my stepmom some issues like not knowing where he went after work and getting lost while driving.  He then fell in the shower and my stepmom and him went thru numerous testing to try to figure out what was wrong but there were no answers.  My stepmom went to her dr and was asked how she was doing and stated that she wanted to kill her husband, jokingly of course and her dr asked why and she explained the situation to her and her dr thought is was a brain disorder in which she refered her to another dr that diagnosed him in a matter of 1 visit.   Things started getting bad about 2 summers ago,  yelling, bad hygiene, not knowing how to use utensils , needing his hand held everywhere cause he would just wander.  He could have conversations but they were limited and repetitive.  He was very child like.  Then last year around April, my stepmom got to the point of no longer being able to care for him communication was more or less babble with only some real words coming out.   He went into a smaller nursing which was quite nice but after only a couple of months had to be moved to another unit because of fighting and not being easily controlled.  He got arrested twice for hitting other patients out of what I considered extreme frustration.    He lost majority of all mobility, could not eat or use the bathroom by himself.  He just sat, haunched over in a chair, muscles extremely tense and ridged, fists always clenched and would have awful tremors.  This all happened around July/ august of last summer.  I would feed him, trying to get him to eat the "healthy" food, but his favorites were defiantly sweets.  Which the nurses encouraged because ice creams and sweets were higher in calories and had more fats.  He lost weight rapidly so the sweets I suppose were better and he LOVED them!  In my last visit with him about 3 weeks before he passed he told me very clearly (which was few and far between with his speech) that he loved me, twice!  It warmed my heart.  In those last few weeks his body stopped taking in nutrients from food and gradually his brain stopped telling his organs how to work.  I went to him the night he passed and he was very peaceful, no tremors, just sleeping, and then he was gone.  It hurt my heart that he had to go but I had a sense of relief for him that he no longer had to suffer.  I miss him but I know he is in a much better place.  The thing that hurts the most is he was so young, only 61 and he didn't get to enjoy his retirement.  I have a slight sense of fear based on this disease only being know to be heredity, I'm his only child with 4 kids.  I can only pray it doesn't skip a generation (his grandfather had dementia) and happen to my children.  My thoughts are with you and just stay strong.  

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