Anyone else surprised at the speed of decline?

Ihtl

Registered User
Jan 19, 2016
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My dad was diagnosed with frontotemporal dementia less than two years ago around his 59th birthday (he was first referred to the hospital about this in 2011).

By the time he was diagnosed he had been on sick leave from work for ~5 months after getting lost on his way home from work, a commute he had been making for over 25 years.
By this point he wouldn't have lunch at home unless we called from work to remind him to have a sandwich or to talk him through using the microwave.
Within a year of his diagnosis he was urinating in his room because he's so confused about where the toilet is, shortly after came the aggression, the violence, getting lost for 4 hours, now there's near daily toilet accidents, a memory span of 30 seconds, wandering about near naked etc.

I know it sounds weird, but I thought we had more time. I didn't think he'd decline so quickly.
 

stanleypj

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Dec 8, 2011
10,712
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North West
So sorry to hear this Ihtl. It doesn't sound weird at all but sadly no-one can reliably predict the rate of progression of any dementia. It's possible for someone's progression to slow down or speed up and, indeed have periods of relative stability. Are your family getting any help at all? It definitely sounds as though you and your dad need it.
 
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Ihtl

Registered User
Jan 19, 2016
82
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So sorry to hear this Ihtl. It doesn't sound weird at all but sadly no-one can reliably predict the rate of progression of any dementia. It's possible for someone's progression to slow down or speed up and, indeed have periods of relative stability. Are your family getting any help at all. It definitely sounds as though you and your dad need it.

He now attends a day centre 5 times a week which has been enormously helpful. He stays until 4pm but it seems we can afford to have him stay until 6pm which we will be doing shortly.

He also has a carer come in three mornings a week to help with personal care which has taken a lot of pressure off, but we're hoping to change agencies because this one is unreliable (carers showing up very late or not at all/leaving before the half hour appointment before everything is done) and we're looking into the possibility of having someone who could do personal care and perhaps take him to the day centre.

It's been a very hard couple of years, especially as we (my brothers and I) lost our Mum a year ago, but hopefully with some more support we could all go back to having Mon-Fri 9-5 jobs, though I don't think we'll ever get over the lack of independence.
 

Stevey

Registered User
Jul 27, 2015
28
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UK
Sorry to hear you're having a tough time Ihtl :(

My mother has gone downhill in a short space of time - 3 months since my dad (and her carer) was taken to hospital and we had to extend her stay in the care home.

Back in November, when she was still at home. she was at least a bit more alert and managed to get to the bathroom on her own, even if she did at that stage already struggle. A result of being taken out of her home environment, new medication and not liking being handled (which means providing personal care is a huge challenge for the current nursing home staff) has meant her behaviour and health has taken a nose drive.

In these past months she's a completely different person to who she was before. It's so sad to see and a terrible upset for us all. Sadly it's just the way things are and we too are surprised at how quickly she's gone downhill. She wets and soils herself regularly now. She often walks around with little clothes on or tries to undress herself in the day room. She is aggressive and distressed at times (especially in the afternoons). We're accepting the fact that this is how it is and there's not a lot we can do about it besides try to stay positive.
 

Ihtl

Registered User
Jan 19, 2016
82
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That is especially hard :( When it gets hard to remember what they used to be like, their personality and all things they used to know :(
 

joggyb

Registered User
Dec 1, 2014
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That is especially hard :( When it gets hard to remember what they used to be like, their personality and all things they used to know :(

Sounds very similar to the rate of my dad's decline, which his consultant said was the most rapid she'd ever seen. Within 5 months of diagnosis, he went into a care home. 18 months on, and he hardly knows who I am, and can't do anything for himself, really. Speech is just nonsense. He is mobile, but only just. Doubly incontinent. Just horrendous.
 

Olivia15

Registered User
Feb 24, 2016
38
0
You're definitely not alone - my mum was diagnosed in 2011 and has been in a nursing home since 2013 and now is bed-bound... I keep looking for things to keep her happy and occupied in bed but it is a struggle!
 

Ihtl

Registered User
Jan 19, 2016
82
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Wow joggyb and Olivia, they both sound like very quick declines, I'm very sorry :(
 

Olivia15

Registered User
Feb 24, 2016
38
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Wow joggyb and Olivia, they both sound like very quick declines, I'm very sorry :(

I think all types of dementia can vastly vary on rate of decline but it is upsetting to see a love one get worse so quickly.

Sending you best wishes x
 

ppjm

Registered User
Oct 11, 2012
10
0
York
My dad was diagnosed with frontotemporal dementia less than two years ago around his 59th birthday (he was first referred to the hospital about this in 2011).

By the time he was diagnosed he had been on sick leave from work for ~5 months after getting lost on his way home from work, a commute he had been making for over 25 years.
By this point he wouldn't have lunch at home unless we called from work to remind him to have a sandwich or to talk him through using the microwave.
Within a year of his diagnosis he was urinating in his room because he's so confused about where the toilet is, shortly after came the aggression, the violence, getting lost for 4 hours, now there's near daily toilet accidents, a memory span of 30 seconds, wandering about near naked etc.

I know it sounds weird, but I thought we had more time. I didn't think he'd decline so quickly.

Hi there - I was just reading your post re your Dad and thought that I would respond as I have been in/am going through the same with my Mum.

Mum is now 66 and was diagnosed 4 years ago with frontotemporal dementia. Mum's decline has been very rapid. She lost her speech and therefore her ability to communicate within a year and was sectioned back in April last year due to her aggressive behaviour and it was heartbreaking.

Mum is still in the same psychiatric hospital as no home will take her. Anyway, instead of babbling on about my Mum, I just thought that I would reach out and say if you have any questions - anything at all - then just let me know.

Thanks,
PPJM