Is It Only Me?

[dmc]

I have been on TP now for a good few weeks, and what a godsend its been to me, but ive noticed that nearly everyone is caring for someone who has had dementia for years or going to have it for a long time, is there anyone out there who like my mum has a dementia so progressive theyre only going to live for a few months (according to the doctors)
as people have said and rightly so, about coronation street being unrealistic in their approach to the disease, but in my mums case it really is that quick!

i cant believe that im the only one who's family has had to deal with this, does anybody know of anyone who's progression has been so quick?

look forward to any replies

thanks

 

[Dave W]

Individual cases, individual stories

Donna

everything that's happened with my Mum has really happened since about January 2005, so I my story is not too different. Mum went from being occasionally slightly dotty to hallucinating, incontinent sometimes and incapable of caring for herself in about four months flat, an most of the acceleration in the space of about 6 weeks. Given the diagnosis of mostly VaD, she almost certainly had one or more strokes during that period.

There have, I suspect, been at least three TIAs since then, each of which gave - to me - a step down, although nothing as dramatic.

With hindsight, there had been early signs (repeating the same conversation, mostly) before, but nothing too unusual in a 70+ woman living alone with a small social circle and repetitive daily patterns: she possibly didn't have much else to talk about. But the acceleration was very rapid.

The difference in my case is that we don't have any prognosis - it could easily be many years, depending on how many more steps there are. (During the period where it all ocurred, she hadn't been taking vital blood ressure medication, which may have triggered the whole thing? Who knows.)

To me the real problem with Corrie wasn't the collapsed time scale, it was that it could only scratch the surface on a complex condition. But at least it managed to get a glimpse of the condition in front of millions of people who probably wouldn't have watched a documentary.

 

[Áine]

Donna

We've not been given any prognosis for dad .... but he's gone from more or less muddling along in his own sort of way, but living alone and very independent (June 2005) to being in nursing home (February 2006). Like Dave says, with hindsight there were signs of something amiss before that, but nothing tangible enough to feel able to talk to GP about it. Sure, dad was repeating the same conversations over and over, but he's done that for at least the last 40 years to my knowledge

Sounds very frightening to be told that your mum's dementia is progressing so rapidly. Did they give a name to it?

hugs

Áine

 

[dmc]

hi both
thanks for the replies,

Aine, i have asked the senior staff nurse what this dementia was called she looked through mums notes for me and the consultant hadnt written a name down? when he told us the diagnosis in february he said it was similar in its progression to CJD only they had tested her for that and that was negative, im not sure they know theyrselves!!

both:
she had her heart attack comming up two yrs in july, so i suppose if you take it from there when the brain was damaged she's had it for nearly two years, although she only had short term memory loss and only started acting out of character in september05 so im not really sure.

all we can do is hopes she proves the doctors wrong, she came out of hospital yesterday and so far so good (thats tempting it )
i just wish we could get some definate answers its not through lack of asking!!
anyway im sure i'll be updating often,
thanks again x

 

[Amy]

Hiya Donna,
Pleased that Day 1 has gone well!
Love Amy

 

[Whocares]

Hi Donna

My Mum's decline has been so rapid its like a bit more of her gets chipped away every time and in the last year she has gone from being almost able to care for herself to hardly able to walk and doesn't seem to understand the "one foot in front of the other" to be able to walk!. She is being taken from us in chunks I cant see where it will end.

 

[sheilarees53]

Hello Donna,

My mum was diagnosed with dementia in October last year and now she is bedridden, cannot walk, feed herself or do anything, she is also incontinent. She has been in hospital, apart from 6 days in February, since last November and we are waiting to hear if she has a place in a local Nursing Home.

Her decline has been so rapid, last September on her birthday she came out for a family meal and was looking after herself, with a lot of help from my brothers and myself, now she is a shadow of herself, literally, she has lost so much weight. She also has a problem swallowing and is hardly eating at all.

I sit with her and hold her hands but she often says she wants to die. I feel so useless because I can't make things right for her, I often wonder what she feels and if she realises what is happening to her.

Although I love my mum dearly and don't want to lose her, I also don't want this torment to continue indefinately.

 

[dmc]

hi everyone

AMY:

thanks for that x

Whocares, sheilarees53

thanks for the response both, i can understand fully what your both feeling,
ive said before id wished she died when she had the heart attack than to recover and now go through what she is, she said to my dad yesterday why cant they give me a tablet to make me better how can you answer that, i wasnt aware she knew what was going on but obviously she does which makes it ten times worst!!


do you mind me asking what form of dementia has your mums got?


sheila,

sounds like your mums decline is more rapid than my mums! my mums birthday is also in september, and she was fine then, but she's not bedridden yet, although eating is getting to be a bit of an issue with her, and she has days when she cannot walk, and other days when she,s ok, this thing is so baffling to me becouse with every good day she has i get my hopes up and yet she's had days when i think she,s not going to last the month!!

whocares,

my mum also has days when we have to prompt her to move her legs: left leg mum now the right leg!!
and yet another time she's up and walking without any help at all


thankyou all for your responses
perhaps i can change my title now to its not only me

 

[Whocares]

Hi Donna

I sent you a private message I think!!