hello, newbie

[Letty]

hi, i just wanted to introduce myself and say hi and hope it's ok to post some thoughts and concerns i have.
I'm 38 and my mum was diagnosed with alzheimers about 18 months ago. My father died 8 years ago and following his death i had concerns about her general withdrawal from society and her short term memory loss but put it down to grief and depression. She's only 61 so it never crossed my mind that she would have any kind of dementia. my ignorance really. Since her diagnosis she had gone downhill very rapidly i think. She is in a residential care home where she has become very withdrawn. She spends all day every day in bed asleep. She is extremely hard to motivate, the staff said they have tried all sorts to get her up and about but with little effect. I have 3 young children and often take my youngest who is nearly one with me but not even the sight of her is enough to get her up. I'm getting really really worried about her and just dont' know what to do. It just can't be right to leave her lying in bed all day but the staff say there is nothing they can do and i understand they can't force her up but i can't bear the thought of her lying there all the time. It seems to me she has given up on life and yet she has no comprehension of where she is or why she's there. It almost seems pointless visiting because i end up just sitting in the chair next to her bed trying to jolly her along to no effect and then i feel guilty for thinking it's a waste of time visiting.
I thought i might ring the gp to go and visit her and see if there is any evidence of depression and whether they can prescribe some anti depressants or not. She has recently moved into this care home from another one so that she is nearer to me but i know that the staff in the previous home said she had days where she would take to her bed, but it just seems to have worsened since she moved. I'm now wondering if i should have left her in her previous home but it was a 6 hour round trip for me to visit so not practical at all.
I'm not sure if anyone can give me any advice or not but i just don't know if this lethargy is part and parcel of the disease process or if something else is going on.
thanks for reading if you've got this far!

[Grannie G]

Your mother might be suffering a rapid decline which does seem to happen to many younger people with dementia, but not all.
However I think you are right to consider depression and I would ask her GP if it could be.
It`s best to leave no stone unturned.
Does she still have a consultant? Perhaps you could have a word about her behaviour and see if you can be made more aware of her condition and the cause of her withdrawal.

[connie]

Dear Letty, welcome to TP. I was saddened when I read your post. I know how hard it must be for you to visit, when you feel there is no positive reaction.

I feel that moving your mum would not have any lasting ill effects, especially as you say that she would take to her bed in the previous home.

Depression can set in with someone with dementia, so it may be a good idea to speak with mums GP. A mild antidepressant could help make a difference, but who knows. No two cases of dementia seem to be alike, and deteriation rates vary so much.

My partner has been in a care home now for three years........no movement, no responses, and yet some others in the home interreact very well. I have noticed that the younger residents seem to deteriorate quicker that some of the older ones, but then again causes of dementia can often play a part.

I realise I have been of no help, but feel sure other members will be along to help you through this situation. Take care now.

[lesmisralbles]

I read it all
Others will come along, and will give you more advice than I can.

Barb XX

[Letty]

thank you for the replies. Still no change really. The last 2 days she has stayed in bed, just sleeping all the time. I don't really know what's going on with her. It's tricky as she's just moved into this area but i did ring the local mental health team today to see if she'd been referred via her previous consultant and she had and apparantly they were having a referral meeting this afternoon where she would be discussed. I have asked for someone to ring me tomorrow and i will ask if they will assess her. I haven't bothered with the gp for now as thought the mental health team will be better placed to give advice. I didn't realise the other day but she is actually on an antidepressant so i'm unsure whether depression is playing a part or not. Her eyes are just so 'vacant' like the lights are on and no one's home and it's just so sad to see, but i guess i don't have to explain that to anyone on here...i guess you all know to some degree. It's just so very sad to see her lying there so lethargic and as if life is not worth living.

[Sandy]

Hi Letty,

Welcome to Talking Point (TP).

It's good that your old and new mental health teams are working together to do a handover of her care to the local team.

The diagnosis and care of younger people with dementia (YPWD) can be quite a complex process. Only about 1/3 of YPWD have Alzheimer's, so quite a few other causes of dementia need to be investigated.

You might want to look at this factsheet from the Alzheimer's Society:

http://www.alzheimers.org.uk/factsheet/440

Hopefully the conversation on Wednesday will put some things in perspective, including her current medication regime.

Take care,

[Letty]

thanks sandy..having read that link, i would definately say my mum' symptoms were indicative of fronto temporal dementia, she fits nearly all the behaviour change traits..things are beginning to make sense now. My oldest boys are 5 and since they've been born she showed little interest in them, would not help me out (they're twins so hard work when they were babies) and i thought she was just being selfish, she was also very very rude to people and we just used to think that was her manner and all of this around the time my dad died so put a lot down to grief. She has been labelled with alzheimers but i'm going to question this now, altho i see the treatment is much the same? however I read that if she does have this there may be a familial link which terrifies me. I will talk to the mental health team today. thanks so much

[Sandy]

Hi Letty,

At least if you learn more about possible causes for your mum's dementia, you will be better placed to raise concerns with the medics. Also it can offer a kind of 'comfort' as it makes it easier to understand things like her reaction to your twin babies.

Often it is the observations of family members regarding things like changes in behaviours that can assist the doctors in making an accurate diagnosis.

The best resource that I have found on the web for FTD is this one from the University of California at San Francisco:

http://memory.ucsf.edu/ftd/

I'm not medically qualified, but from I've read there may be some evidence the certain people with FTD do better on Ebixa(memantine) than on traditional Alzheimer's drugs like Aricept. Like most of these things, individual drug reactions can vary widely and can be a process of trial and error.

It's a bit early to start worrying about genetics (though completely understandable). The site above says:

50-80% of individuals appear to be the first person with FTD in the family, also called sporadic or nonfamilial FTD. In these cases, other individuals in the family do not appear to be at increased risk for developing the condition.

Hope the conversation with the medics is productive.

Take care,