New member

[Quality Patsy]

Hello all

I have just joined this forum so I'm saying hello.

My mum was diagnosed with AD last March...on the same day I had a baby so you can imagine it was somewhat fraught in our house. She lives 300 miles away and I am obviously always worried that I am not spending enough time with her but the two boys and the workaholic husband, not to mention the job and the rennovating the house, are all clamouring for attention (me! me! no, she did you a minute ago - my turn! no, the dishwasher's had you for two minutes, you've got to do me now! Get off, Tax Return, it's Sainsbury's turn now. Mummy, stop reading a story to the electric meter man, read one to me and then let's make buns').

Would say I was spread very thin but the Creme Egg fix has rendered that unlikely.

She is very, very upset and angry (my mum, I mean) obviously. Why oh why didn't they just tell her she was getting on a bit (70) and everyone else was in the same boat? As soon as they said the A word she just felt her life was over and has been very depressed and down since, despite the good things in her life (lives in nice house, with best friend, has lots of mates, enough money, adores grandchildren and children, otherwise fit & well).

Or am I being bad to say that she was happier off not knowing, given that there's not much they can do about it? Thoughts?

 

[Margarita]

Hi & welcome gosh you do sound like you have your hands full.

The doctor did tell mum 4 years a go ,now she forgotten & still does not except it .mum ask me why she takes so many tablets the other day I tell her its for her diabetic ,high blood purser , I don’t say anymore about the memory tablets ,learn the hard way ,she go in to one that there nothing wrong with her memory .

I don’t know what to say on what’s best to tell them or not, must say I would like to know, your mum must be in shock

Sounds like you’re going to have to ride the waves with your mum put your self in her shoes.

Have they told your mum about medication? Slowing it down may make her more positive.

 

[Tender Face]

Hi, Quality Patsy,

Hey! If we can’t indulge in Crème Eggs this time of year, when can we?
Good on you! I refuse to feel guilty about ‘comfort eating’ – given the amount of physical energy I feel I expend every day I figure I should be able to burn off a few calories here and there! (Yeah, yeah, I know best advice I got from my own GP recently was to look after myself and diet – but I figure a bar of chocolate and the odd G&T (didn’t mention whether that was by the glass or the bottle!!!! ) are better than turning to illegal stuff!

Lovely to see your humour .. and the only advice I feel able to give you (from my own perspective) is that keeping hold of that is absolutely your ‘best weapon’ right now – and for the future. Hopefully, your ‘little ones’ will see to that.. much as they are ‘hard work’ they are surely the nicest ‘hard work’ to be blessed with….. and one little chuckle from a toddler can brighten a whole day….. for anyone (even when the bun mix is on the ceiling!???? No? )

On a much more serious note….. I sympathise with your mum’s reaction and your concern about being her being ‘told’ her diagnosis. I can only relate how things are with me and my mum in that it might shed a different perspective…..

We (as in me, hubby, GP, close friends who know) are keeping the ‘A’ word from mum. I find myself constantly now telling white lies (and thanks to the support from this forum realise I am not alone in this). GP agreed with my view that to suggest ‘A’ (or other named form of dementia) would cause mum too much anxiety. Mum has ALWAYS been anxious – not just in recent years!

Now, I am concerned, that I am not being fair - that mum is looking for the comfort of a specific diagnosis – whatever that might be. (One family friend actually said to me last week, ‘But, do you really think she doesn’t know? Or that that is not what she is worrying about?) So too, as with everyone here, we are dealing with unique people and many of my mum’s physical symptoms would point to a return of various cancers she has so far battled and survived.

I wonder would she be ‘happier’ (that doesn’t seem the right word) if she had a diagnosis of a physical ailment – even of the prognosis was short-term?

I have seen in my own family – and amongst my peers- the heartbreak and angst of a diagnosis which medics say is inoperable/untreatable and we look to palliative care – but usually with a ‘finite’ which can be reasonably estimated. We ‘know’ how a cancer might (or might not) ‘take hold’…… we know what support – emotionally or otherwise – and treatments might be available

The ‘horror’ to me of this disease is its unpredictability, for both sufferer and carers. Yet, I feel it is important not to lose sight of the fact that whilst we might cry about the ‘long goodbye’, for all the heartbreak, this is not an immediately life-threatening disease, not a heart attack, not a tragic accident where we don’t have time to plan and prepare….

If one thing this disease has taught me it really is to make the most of every day!
To have now the chance to look after my mum and tell her in every lucid moment how much I love her is far better to me than to think of losing her some other way and to have lost that chance….. and who knows… for how many years?

I shouldn’t worry too much about being far away. The ‘practicalities’ can always be managed – phone calls and photographs can show how much you – and her grandchildren – love her.

Your mum’s anger could just be part of the natural loss/grief process for her own sake and could pass.

Bit like a toddler tantrum!

Hopefully, when this degree of anger subsides, you can both look forward to making the best of the future you have got. It may be tough at first, but I certainly can see there is a lot to be said for having things 'out in the open'.

Look after yourself and those ‘bairns’!!!!

Hugs, Tender Face, x

 

[Norman]

Hi Patsy
welcome to Talking Point,I am sure you will get lots of advice and comfort from this site.
My wife was diagnosed with Alzeimer's ten years ago (I thought it was 7 until the consultant produced the records last week),she believes that she has a bad memory and that is what she is told.
I believe ,and it is my personal believe that it is kinder not to mention AD.
Norman

 

[Sandy]

Hi Quality Patsy,

Welcome to Talking Point (TP).

I think most of us who are 'sandwiched' between the generations can relate to your experiences at the moment. Life can feel very bitter sweet at times (not an allusion to chocolate - a first for me ).

The great thing about TP is you get real emotional support and down-to earth practical advice. I've always felt that knowledge is (limited) power, but dealing with AD can leave you feeling very powerless at times. If you're the sort of person who finds reading books helpful, can I recommend Learning to Speak Alzheimer's by Joanne Koenig-Coste. Here is the blurb on Amazon:

http://www.amazon.co.uk/exec/obidos/ASIN/0091886724/qid=1144792572/sr=8-1/ref=sr_8_xs_ap_i1_xgl/202-6038771-9154248

There are also loads of fact sheets on the main Alz. Society web site.

I can see why you are worried by the fact that your mother knows about her diagnosis, but I do think that is the approach that most GP's take these days. I suppose there is the issue of informed consent - especially if medication is involved. Is she on any medication, such as Aricept and/or anti-depressants?

Right now your mother is probably grieving and part of that is entirely natural. But drug treatments (if you can get them and keep them) can be quite effective for a number of years. Also, as AD comes 'out of the shadows' there are more and more people with a diagnosis of AD who refuse to see it as an end to a productive and fulfilling life. There is a section of the main web site worth looking at just for people with AD (be sure to look at the Forum section):

http://www.alzheimers.org.uk/I_have_dementia/index.htm

Take care,

Sandy

 

[connie]

As Lionel was not yet 60 when he was diagnosed, the consultant told him, and he accepted it. Shocked for some time, as he had to give up work, but gradually came to accept his new regime.

Lately, 5 years on, he now questions diagnosis, along the lines of......when I get my memory back, or when I can walk again properly etc..............this I find hard.
I made Lionel a promise right from the start that I would always tell him the truth, and so I do.

I have to fudge the edges a bit these days, stark truth can hurt, but he still has such an insight into his condition. No two cases are ever the same, so we just have to do what we feel is best for our loved ones.

Take care now, Connie

 

[Brucie]

I agree with Norman, and I told doctors that Jan should never be told explicitly what her problem was/is.

However, as with so many things, it is something that will vary from patient to patient and family to family, I guess. There are so few blacks and whites in this illness - it is all shades of gray.

 

[Quality Patsy]

thanks all

Thanks for your thoughts all.

She is on medication, aricept and galantamine - which she enjoys telling me is made from snowdrops - but I thought that galantamine was only supposed to slow down the symptoms for 18 months or so which I have to say it's not doing, since she was diagnosed a year ago and they put her on it she's got much worse - which I think is partly depression. I think she's had it about seven years, she organised my wedding ok and then after that we noticed things weren't right.

My dad died just before the wedding (they were divorced but even so) which was obviously horribly stressful. Him dying, I mean, not the wedding. That was a blast. Having been a headteacher her organisational skills were once tippy-toppy so everything went without a hitch, apart from the French contingent getting locked out of their B&B, my father in law losing the marriage license (twice) and my mother in law having a coniption about the photos and locking herself in the loo. None of which she could've foreseen really.

 

[Lynne]

How was that again?

... and my mother in law having a coniption about the photos and locking herself in the loo. None of which she could've foreseen really.

No, can't make a typo out of it, I'll have to ask ...


Hi Patsy,
I'm so sorry this has landed on you, in addition to all the other things you have to deal with. Being far away when someone in the family has a crisis really sucks, and AD sucks even more. There's no 'good' circumstance for something like this to hit anyone, and I'm sure your Mum must be really depressed at the diagnosis. She's obviously a highly intelligent woman, which must make the prospect of mental deterioration an awful thought for her to brood on. Is the doctor addressing the possibility of depression? Perhaps it would ease your mind slightly to write to her doctor with your observations, and ask for him/her to watch out for it.

As to 'should she know the exact diagnosis', well, perhaps she asked for it (literally, I mean). Many strong forthright people DO say to their doctor that they want to know exactly what's wrong, and that it their right. Anyway, what's done is done now, and it can't be unsaid, can it.
All anyone can do is try to help her over the shock, and perhaps tell her (subject to any actual information to the contrary) that many AD sufferers can carry on a relatively normal life for several years after the initial diagnosis. There are contributors to TP who are sufferers, but who are coping and still compos mentis.
There are no set time-scales, no way of predicting how things will go. That's both a blessing and a curse, the uncertainty of everything; so encourage your Mum to make the most of her abilities NOW, while she can still ... (insert whatever she would normally do!)
If she can, perhaps with the help of her friends if necessary, travel to anywhere she wants to go, people to see. Hang-gliding, if that's always been a burning ambition.

And excuse me if it's an impractical suggestion. You didn't say how badly your Mum is affected so far. My Mum forgets a lot of things, but is basically OK so long as nothing out of the ordinary disturbs her domestic routine. She can (and does) still go down the town on her own, she doesn't get lost in familiar surroundings. cool: She might come back home without what she went down there for, but she does make it home!)

That's my two pence worth, anyway. Turn her anger into positive action. Who knows, that proverbial bus might come round the corner and bowl her (or me, or you) over tomorrow - carpe diem!!

 

[Quality Patsy]

Well I think Lynne by the sound of it she's at the same stage as your mum. She'd go into town and forget her purse or why she came, but she wouldn't forget the way home.

She can't recall any of my friends without me going through a great rigmarole every time (Clare, you know, lives in Bath, married David, got little girl, speaks Czech, tall, nice hair - yes, that's the one!) or my middle name or where she is in a book, which is difficult because she loved reading but now doesn't bother much.

The exploits of my boys keep her going I think, luckily, there's a large amount of exploit going on.

 

[Lynne]

A thought?

May not work (due to reluctance of kids to write letters) but what would your boys think about writing to their Nan themselves, and telling her first hand of their adventures? (She could 'mark' their hand-writing out of 10, Lol)

Yep, my Mum is having difficulty with names now, can't match which baby goes with which niece or nephew, or where they live. The neighbours both sides have changed in the last 2 years, and she can never remember the 'new peoples' names. And yet when we visit the doctor, she puts on a command performance and assures him she's in excellent health (but couldn't spell WORLD backwards, or count backwards in 3s, or remember more than 1 of the 3 random objects).

Since that appointment, she has been practising DLROW daily, ready for next time!! She's both aggravating and heart-breaking at the same time. It's like the spirited little soul she always has been is driving her on, which is typical. I'm SO proud of her , even though sometimes I could scream blue murder at her. What can you do

Regards

 

[noelphobic]

coniption/conniption

No, can't make a typo out of it, I'll have to ask ...
QUOTE]

have a conniption fit (American, old-fashioned)
to be very angry or upset. My mother would have a conniption fit if she could see me now

 

[Lynne]

Thanks Noel