My Dad has just been diagnosed with Alzheimers

[FunnysInLaJardin]

We knew he was losing his memory, but oddly shocked by this. He is practically housebound anyway, and at 87 doing OK I suppose. Just a bit sad and a bit worried about how my mum who is 84 will cope.

Years ago he said his worst nightmare was to have dementia. I said this to mum and asked if he knew what his diagnosis was, and she said yes, he just can't remember what it's called. Oh the blackness of it.........!

I am so sorry. Have writtren more and deleted it as it's not helpful. What have his symptoms been so far?
Do either of them drive?

Thanks Stealth. My mum drives, but my Dad doesn't anymore. His symptoms are forgetfulness really. He didn't recognise one of my mums friends who came round the other day. Apart from that oddly he seems happier than he has done in years.

Do you have experience of this?

The Alzheimer's organisation has a very good forum for support and information )well they did and I assume they still do). Just search for Alzheimer's Talking Point.
What help is your mum receiving? How much is there that she isn't telling you? Is he wandering at night? Has he been physically violent or verbally abusive?
(I'm really sorry to ask all this but if you don't know you should. And I'd hate for you to find out this sort of thing later and wish you'd asked the questions to begin with)

Good. Happily confused is good. My grandma had it for a long time. She died last year at the age of 79. She must have started showing symptoms at about the age of 65. But she was never happily confused.

Sorry, what I meant byt that last bit is everyone experiences dementia differently. And so me going on about my experience won't necessarily give any insight. So I will shut up and go to bed :) Make sure your mum gets all the help possible. And if you haven't already, maybe look into EPOA for your mum and your dad, if he is still in a position to give consent.

Thanks again, that's all really helpful. No I don't think he is wandering about or being violent or abuse. TBH he was always quite shouty, so hard to tell! He's wheelchair bound really so no issues from a physical POV. Besides my mum tells me and my sisters everything so if there were any issues I hope we would know.

Sorry about your Grandma and again thanks for your support. It's odd, everyone else seems to think it's a foregone conclusion, like I am the last to know. Denial I suppose. I'll check out the Alzheimers website.

I told my mum tonight that she needed to get an EPOA sorted as soon as she could. He can still give consent I think.

My sympathies Funny. My Mum 87 has a diagnosis of alzheimers since 2008, at first i felt very sad, upset, depressed, confused, angry, frightened, worried about the future - hers and our family. I'm sure you will and are feeling some of these emotions.

My mum is on Aricept and so far is doing better than i expected - it seems to arrest the symptoms and stop them from getting worse. The consultant at the memory clinic who diagnosed your dad should be able to prescribe these for him and will monitor his symptoms. My mum has 6 monthly memory test and check ups - when i've needed help i've been able to ring a mental health nurse and speak to them and they've visited my mum when she was in her very gloomy depressed state and have really supported the family.

I get support and advice from the Alzh society forum - talking point. i've found the alzh society website informative too.

My mum lives on her own in sheltered accommodation with 24/7 care available to her, 2 minutes from my brothers house and she goes to a day centre 3 days a week which she loves and its a real life line for her and us.

I have power of attorney on her financial affairs.

Reading your posts Funny my mum also seems happier than she has done in years - i think its cause she seems to have lost some of her inhibitions (part of the illness) and can be so funny at times. We often have a real laugh together and i've learnt encourage her humour and to cherish these times

If you need any help support a virtual shoulder to cry on just ask me or pm me funny

Thanks nell, thats really helpful and so good to know your Mum is coping so well. It's just what I needed to hear, as if Dad stays like this he will be fine. It's just the prospect of him getting worse and then Mum not coping that worries me the most.

I spoke to my sister today who lives near them and she is going to sort out the Lasting POA and take it in her name so that we can get to grip with their finances. Mum has never dealt with the money and so my sister needs to take Dads place really.

Thanks again, the offer of support means a lot to me

Hi Funnys
Sorry for being a misery guts yesterday. Forgot to mention that my grandma was too bad when aricept/ebixa came out - I remember everyone talking about it but it wouldn't hep her at the stage of illness she was at. I do get the impression it's a bit of a wonder drug if taken in the early stages.

Stealth don't worry at all, I was glad of your support! My Dad is being assessed to see if his heart is strong enough for him to take medication and if it is then the outlook doesn't seem quite so bleak. You must have had an awful time with your Grandma.

HI Funnys - I'm sorry to hear your Dad has had this DX, alzheimers can be a frightening word because it's a bit of the leap into the unknown for relatives and sufferers.

My own dear Dad had had alzheimers for eight years before he died last year at the age of 91. It is tough to cope with, but actually getting the DX helps because then your dad will be eligible for assistance - financial probably and SS care if he needs it, and he may be able to go to a memory clinic - where they do exercises and activities to help people.

Aricept helps slow things down, and they will keep testing him to see how well he is doing on it.

There's such a lot of things to do with this illness, that it's hard to think of what to write to be helpful. My mum joined a carers group which gave her contact with other people in a similar position - so they could give emotional support to each other, and also there was lots of information about the kind of help she was entitled to (for instance some areas have a sitting service where someone will sit with the person with dementia while you go and do a bit of shopping etc. - for a very minimal cost, also help is available with transport to hospital, and there may be day centre facilities available for your Dad, so you mum can get a break)

I would say that for a good six to six and a half years of the eight he had after DX, my Dad had a pretty good quality of life - he was happy, although a bit anxious, he retained his sense of humour and his character, he was very much still Dad, even though he might not always remember who I was. Once he reached the advanced stage, there were more physical problems, - and he lost a lot of mobility - but again, I would say he was not unhappy.

Different people are affected differently - so of course I can only give my experience. We found practical things like putting the day and the date up on the fridge so he could see it, and writing messages on things to remind him where things were or whatever, helped to some degree.

Sorry this is a bit of a ramble, but there is a lot to say - Anyway -if you have any questions you think I might be able to help with, just ask

Thanks Kurri, thats really helpful. I'm going to look into what type of help they can get. Do you know who provides the care etc? Is it the local authority? I'm not in the UK, but said I would look into what assistance they could get in the absense of any practical help. I suspect it is means tested etc My mum really does need to know she can have a break if she needs it as she's his main carer and although in good health, is 84 herself.

Funny's it is Social Services (so yes local authority) provide care of a 'social' nature - e.g. my dad had someone come in morning and evening to wash, shave and dress him, as once he became immobile he was to heavy for mum to manage. Also afaik - the household items like rails on the bath, a pressure cushion, a walking stick, wheelchair etc, came via SS.

It is means tested, - definitely regarding attending a day centre, and I think the in house caring too. - (Not quite sure about the latter)

Some thing come through the NHS if they are classed as 'medical' (this would include such things as incontinence pads etc.)

My mum didn't use it, but I think there may well be respite care available for carers, mum used people who would come in for a few hours to sit with Dad, or me or my sisters would look after him. But I know she did consider the respite option at one point. - Definitely worth your mum looking into, especially if she is frail herself - it is pretty tiring, and also I think my mum missed having someone to talk too, conversations with Dad became pretty circular as he would ask the same thing over and over - and that in itself is quite wearing to cope with.

Their GP should be on the ball about telling them what things they are entitled to and direct them to the right place. There is a reasonable amount of help there, but you have to look for it sometimes. Local organisations for dementia, and also help the aged, are very good. SS should tell your Mum how to apply for any benefits she is entitled to (such as DLA) and about any reductions on services she could get (for example My mum paid less for her water rates because of extra washing - this was in the later stages, when Dad was a bit incontinent.) -
Hope I didn't upset you mentioning that aspect - it's one of the unfortunate problems with late stage alzheimers - but your Dad will be a long way from that, my father was fine for years, and actually the incontinence was more to do with his limited mobility than complete lack of control.

I wish you and your parents luck - I hope your mum gets all the help she needs and is entitled to, - and take care of yourself too - elderly and infirm parents are a worry

hi Funny when my mum was diagnosed i contacted her gp and asked for her to initiate a care plan with social services once she did this the ball started to roll, my mum was seen by social services with me present, and care provided. to answer your questions: it is means tested - social services or the council (Sorry i can't remember who) sent someone out to assess her financial circumstances and then told us how much she'd be expected to pay. My mum gets a carers allowance and i use this to pay for whatever she needs in the way of care - this can take any form that will help her manage her life and cope. the level and kind of support need is determined by the social services assessment, but if i wanted to use some of my mums car allowance to get her hair done or to pay for taxis i can do this. I also pay a monthly sum of money into my brother's bank acc as he does quite a lot for my mum too and i'm allowed to do this.

Care is either provided by the social services directly, or by organisations who are commissioned by social services, or by an independent company - i used to pay for a cleaner once a week from Age UK. It depends on the local situation where your dad lives.

Be prepared to push for everything for your dad, sadly it shouldn't be like this but what with underfunded and understaffed services people don't always do their job properly or there's not the personnel to do it.

I found out lots from going onto the Alzheimer's Society forum and website.
good luck, Funny

Nell :)

sorry, i meant care allowance, not car! :):)

Thanks so much again for all your advice. I'll look into it once the POA is sorted. And Kurri don't worry about upsetting me, my dad is already housebound and uses a bottle to wee in during the day as he can't get to the loo, so hopefully it won't get too much worse.