Mom with FTD rapid deterioration.

[nikkia]

Hi,

I am 32 years old, my mom is 62 she was diagnosed with FTD 2 years ago. Although we noticed symptoms 5 years ago. She became anxious and quite forgetful at work but mostly she was ok. Things got worse quite quickly and she found work as a secretary an impossible task. We were referred to the memory clinic in December 2013 and she was diagnosed with mild cognitive decline. She was happier staying at home and comfortable with people and places she knew. Unless you spent long periods of time with her you wouldn't particularly have known anything was wrong. I guess as I see her all the time I dont notice the severity as ive just got used to her the way she is and i love her. But it hit me yesterday when she didnt remember my name not momentarily but couldnt think of it at all. She didnt remember her own address or mothers name, she has always been quite good at remembering the past but it was all gone. She puts dirty clothes on and can't renember how to use washing machine or cooker. She can't tell me what shes had for dinner even if she only just finished it. She tries to pay in a shop with a fiver when the bill is 80 quid she has no concept of most things. Her speech is hugely impacted she cant form coherant sentences its sad because sometimes she knows what she is trying to say but the words fail her.

I guess I wanted to hear other people's experiences, I have no idea if this level of decline is normal or not? She had a job 4 years ago she knew me 4 years ago, it seems awfully quick and Im worried how quickly things will decline further, im not sure im ready but if im honest with myself Id have to say things were significantly worse on the ladt 6 months....does that mean the next 6 months will get even worse or could she just stay like this for a while, what is the norm, doctors just keep telling me every case different.

Thank you


Nikki

 

[karaokePete]

Hello @nikkia welcome to TP. I hope you will find the forum a friendly, informative and supportive place.
It's a truth that no two people with dementia will progress in the same way, It's also true that the edges of the 'stages' of dementia are blurred so that things that are often seen late stage are seen earlier etc.
Do take time to look around the site as it's a goldmine for info. I started with the very informative factsheets and they can be found by following this link https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

You don't mention, but has your mom had a needs assessment? This aspect of things, as well as getting affairs like POA in order are all covered by the Factsheets

 

[canary]

How quickly people progress really is individual - some people progress very quickly and others are much more slow. I wish we all got given a crystal ball at diagnosis, but unfortunately we just have to go one step at a time.

I would like to mention that one of the things about FTD is that language is particularly affected. My OH with FTD is already losing many words and he is only in the early stage. He cannot remember the name for things or people, but he still knows what and who they are IYSWIM. Just because your mum cannot remember your name does not necessarily mean that she has forgotten who you are.

 

[Philbo]

Hi Nikki

My wife was diagnosed with FTD in January 2014, aged 63. It had taken around 9 months or so, from visiting our GP to progress to the memory clinic, MRI scan etc. Like your mum, I think the signs were there several years before this, which seems quite common.

As Canary mentioned, FTD seems to affect speech a lot and this has been the case with my wife. The early progression seemed quite rapid but then slowed for the next couple of years. More recently, things seem to be deteriorating more quickly and it has started to affect her mobility more. She is inclined to stoop and shuffle a bit when walking though I think this is a combination of the dementia and her long-standing back problems.

Her sister, who lives about 90 minutes away, but only visits a few times a year, was very shocked at the decline, when she recently visited. I guess caring for my wife 24/7, I don't notice the decline as much?

Best wishes.
Phil

 

[nikkia]

Hi, Thank you.

I think she does know who I am, as in she knows im familiar she always smiles at me and hugs me and will hold my hand. But she doesn't remember who I am in relation to her because she doesn't remember having children, sometimes she thinks her grand children are her little brother from 40 years ago. Then she doesnt remember her brother as she expects him to be 10 and his 50.

We used to get good days and bad but now its reached a point where its just the same all the time. But im used to it now, we still have a laugh and listen to music go ice skating or out for coffee. She asks me the same question literally 100 times a day, she obsesses over tiny things, she cant follow a conversation or tv show. She has no idea aboit social norms, so when walk in she will thrust letters at me that shes been obsessing about (all junk mail as i have POA and all bills or important things come directly to me to stop her worrying) .Ive made her a simple scrap book of her life and we go through it each day. I guess I want to know the impossible, I demand more scans, different meds, answers...she was only 57 when this started we were originally told it was the menopause...but im tired of fighting ive accepted it now but im so scared of the unknown. I promised her id look after her and she said never put me in a home but im worried i won't be able to cope if/when things get worse.

Thanks

Nikki

 

[nikkia]

Thank you Phil, It's really helpful to hear other people's experiences. Decline in Speech seems to be a commonality. I think your right when you see them all the time you don't notice its just normal. When family see my mom every 4-6 months or so they comment on the rapid decline.

Does your wife go to any support groups? We tried one for mom when first diagnosed but at the time mom only 60 and she is or was a young 60 and everyone in the group was old and much worse than her, she hated it.

x

 

[Philbo]

Thank you Phil, It's really helpful to hear other people's experiences. Decline in Speech seems to be a commonality. I think your right when you see them all the time you don't notice its just normal. When family see my mom every 4-6 months or so they comment on the rapid decline.

Does your wife go to any support groups? We tried one for mom when first diagnosed but at the time mom only 60 and she is or was a young 60 and everyone in the group was old and much worse than her, she hated it.

x

Hi Nikki

My wife has a respite visitor come to our house every Monday afternoon for 3 hours, provided free by a charitable carers support organisation. She also goes to a local dementia "activity morning" on a Tuesday, ( modest fee of £40 a month) at a church community centre where our local dementia "hub" organises various activities. On a Wednesday, she attends the LA/NHS day centre from 9:30 to 15:30, which we also pay for (being self funding).

I don't think she would have tolerated any of these in the early stages but has things progressed, she retreated into more of her own happy little world. So she will happily go wherever I take her and although difficult to tell, seems to enjoy things.

Phil

 

[Countryboy]

Hi Nikkia its difficult to explain but I think Canary was giving a good example, I don’t have a crystal either however I have had the diagnosed of dementia since 1999 (age then 57) coming into my twentieth year of having Fronto-temporal-dementia I was first diagnosed with Alzheimer’s but it was change to Fronto-temporal-dementia 3 years later now I would say my memory is fairly good for my age the problem is the memory thoughts get lost getting transferred into speech so it sounds total rubbish but believe me its not rubbish at the start this obviously cause frustration some colourful swear words however fortunately I can use a computer so I can converse that way ok its not brilliant and possible difficult to read at times but it looks ok coming from my brain, can I just say I was a few years ago I was a member of an Alzheimer’s Society group there were 8 of us we met once a month five of the group had Fronto-temporal-dementia and were self sufficient all driving and all older than me so as said previously its difficult to get an answer

just want to add my brain is fine its my Frontal Lobes that are damage I will to try to explain for instance if my brain had ten wires carry signals / information for my speech in my case a couple of the wires are severed hence not all info getting through believe me its ok at the source

 

[nikkia]

Hi Nikki

My wife has a respite visitor come to our house every Monday afternoon for 3 hours, provided free by a charitable carers support organisation. She also goes to a local dementia "activity morning" on a Tuesday, ( modest fee of £40 a month) at a church community centre where our local dementia "hub" organises various activities. On a Wednesday, she attends the LA/NHS day centre from 9:30 to 15:30, which we also pay for (being self funding).

I don't think she would have tolerated any of these in the early stages but has things progressed, she retreated into more of her own happy little world. So she will happily go wherever I take her and although difficult to tell, seems to enjoy things.

Phil

Thank you Phil. Im glad your wife seems to enjoy where you take her. Im sure the respite is also helpful. I adore my mom i really do but its hard. She is at the stage where she hates being left or meeting anyone knew, she used to say all.the time 'you won't put me in a home will you?' Ive always said I'll look after you Mom. I tell her every day. I think I need to look into services available we are also self funded. Thank you Phil talking to you is really helping me x

 

[Philbo]

Hi Nikki

Glad it helps - I have quite a good support network that I have actively cultivated over the last 4+ years. However, when you are the one doing all the caring the majority of the time, it gets very lonely?

I know that there are many other carers who’ve got more to deal with than me but nevertheless, two phrases often spring to mind:
“Who cares for the carer” and “stop the bus, I want to get off”!!

I obviously can’t predict how your mum’s condition will progress, but with my wife, although she has continued to lose much of her cognitive abilities, she has in some ways, become easier to help.

Sure it is taking more and more effort, but at least we no longer have the angst and stroppyness.

Finally, no matter what solutions you end up having to resort to, you will still be looking after your mom and her best interests.

Kind regards.
Phil