Where do we start?

[chrisc]

Hello all and season’s greetings to you and your families

I am new to the forum, it's great to find somewhere to talk to others, I've read through many of the other threads and whilst some comments make me laugh because of the similarities, others fill me with fear for the future.

My Dad is a reasonably fit 75 and was finally diagnosed about 6 months ago with suspected AD, although as many of you may have experienced, his previously mild symptoms had been noticeable for several years, he'd actually been calling me by my brothers name for so long that I'd given up on correcting him lol.

Sometime around May last year he experienced an 'event' whilst in the garden with my Mum, Mum thought - and so did we - that he'd had a minor stroke as there was a severe and instant change in his state of mental awareness, motor skills and so on, even his face looked different because the muscles seemed to have relaxed. We were really concerned about his condition and somewhat surprised when the GP said he didn't think it was a stroke but AD, over the next few weeks many of the symptoms associated with his 'event' went away, in fact he returned physically to his previous levels of activity - apart from the more frequent and prolonged naps, a general disinterest in what was going on around him, forgetting to shave (they will be married 50 yrs in Sept and Mum has never known him not to shave EVER), of even more concern was that his general cognitive function and short term memory were showing accelerated signs of loss. His short term memory was and is dreadful, he went for lunch at my Aunts for the day last May - this is a rare and unusual event which normally would have stood out like a sore thumb in his mind as he likes her very much - but the next day, and to this day - Dad had no recollection of it whatsoever. They came to stay with me for a weekend and Dad thought it was a B&B and asked whom to pay when it was time to go home, I could tell you about hundreds of daft, out of character and often quite funny things he's done over the last few months but I'm sure you have already got the idea!

I still wonder even now if he did have some kind of mini stroke in the Garden that day which might have sped the AD up a bit?

Anyway Dad's seen the specialist a couple of times and had various tests, scans etc and the diagnosis was confirmed in the autumn as probable AD.

I'd like to ask you for some advice, my Parents live a long way from me, in fact they live a long way from all of our Family and as a result - aside from regular weekend visits from my Brother, Sister and myself, my Mum is on her own with Dad.

My Mum is very protective of Dad, she's a bit 'old school' and likes to keep problems in the Family so as far as I am aware she hasn't really sought any help or advise about AD. She hasn't told him he has AD as she doesn't want to upset or worry him, in fact whilst she seems to be very realistic about the future in some ways, in others I feel she is making her own life difficult by pretending to him that there's nothing wrong, she doesn't seem to be able or want to confront things and whilst I totally understand this, I believe there is a time when things have to change. The final straw for me is that she has declined the specialists offer to try drug therapy, the story she gave me was that the specialist didn't think that they would do much good and the side affects could be nasty for little gain etc, although there may be some logic in her thinking, THE TRUTH is that she doesn't want Dad to have to take a pill every day and keep asking her what it's for? She doesn't want to confront the issue and tell him he has AD.

I know this all sounds crazy but we're having to try to help Mum - long distance - and as she is the one dealing with things day to day it's hard to sweep in on a weekend and start stirring things up. In truth we try to use the weekends these days not so much to see Dad - unless he's having a good day - but to see Mum and give her some real conversation.

Have any of you experienced similar situations and if so how did you deal with it? Also when you told the sufferer they had AD, how did they react? I love my parents very much and worry constantly about them, I can see that as time goes by my Mum will be the one who suffers most and I would just like to try and help her get through.

I have many more questions about when/if and what sort of help to call for, whats available to them, how should we plan for future care, if he has to go into care at some point what kind of financial impact is that going to have and how should that issue be broached? Mum is 70, she's not superhuman and is starting to get a little frail so these are some of things we are starting to think about now even though we pray they may not be necessary for some time.

Many thanks & have a happy new year.

Chris

 

[Jude]

Dear Chris,

It is apparent from your post that you are a very courageous, caring and practical person with great respect and love for your parents. Your problem, as I see it, at the moment is one that most of us have or are going through. You are very hesitant to upset the status quo and have realised that very shortly you are going to have to do just that - and you are going to hate doing so. Your father needs help and your mother is fearful about the future and is in denial that anything is actually wrong. So now you've reached the point where you realise that very shortly you will have to become a parent to your parents and take control of their lives. It feels rather like usurping the throne and deposing the Monarch, when secretly inside you feel like the Young Pretender and wonder if you have any right to do so.

Living so far away from you parents doesn't help either, since you feel like you 'sweep in' and interfere. This is exactly how I felt. 'Daughter comes back from overseas after 30 years, takes control of finances, sells family home, causes general mayhem and upsets parents'. What a nightmare...! What a huge guilt trip!

Well - you HAVE to do it and sooner better than later, before your mother's health starts to suffer due to her inability to handle your father's ever increasing eccentricities and her desperate attempts to keep life 'normal'.

What to do first? There are some excellent advice sheets on this web site. Might be a good idea to print some of them and gently ask your mother to read them through with you. Also, have a quiet word with your family doctor. Perhaps he can prescribe Aricept for your father, which will improve his memory incredibly if he can tolerate them. Before my father started taking them, he was halucinating and doing really strange things. After only a fortnight, he was about 60% back to his old self and so far, after 4 years, hasn't become immune to the drug and is fairly stable on a daily basis. Perhaps your mother can explain to your father that they are to help his memory, as he will understand that. Mainly you need to help your mother accept that your father needs some help, which in turn will help her cope.

Also, perhaps you could organise your CPN visitor to sit down together with your mother and yourself and organise an initial plan for the future months. This might help your mother begin to come to terms with the situation.

Get yourself informed too. Lesley Anne on this site has just given me information about a great book called 'Learning to Speak Altzheimers' by Joanne K Coste, ISBN 0091886724, Vermillion Ebury Press, which she feels is essential reading.

Keep tuned into this website too - there are so many people looking for and receiving wonderful advice and support every single day. Many have no formal training [like myself of course], but can help with ideas, news and views and experience of dealing with problems as and when they arise.

Good luck and a very Happy New Year to you and your family.

Jude

 

[chrisc]

Hi Jude

Thank you for your kind words, I know it's stating the obvious but one of the most wonderful things about forums like this is being able to talk with like minded people confronting similar situations, even as a "freshman" it's obvious to me that the decisions we are forced to take by this awful illness are some of the most major that perhaps we will ever face.

I think I read that your parents were both already ill when you returned from overseas, did your parents (or those of others) realise they had AD or did you have to tell them, if so how did they react to the news? Daft as it might seem, after you told them did they forget?

Does anyone out there allow their AD parent to drive, is this safe? One of the few things Dad can seem to do almost on autopilot is drive his car, but I'd like to know if anyone else allows theirs to do this.

My Dad can be 'almost normal' one minute and then confused and forgetful the next, I think this must be one of the most stressfull situations for the care giver as they never know what they are going to get - each day is a lottery.....

Chris

 

[Jude]

Dear Chris,

Although I wasn't aware that my parents had AD before I got home, my father had actually taken himself off to the Doctor, since he was worried about his hallucinations. The Doctor prescribed Aricept 5mg after Dad had taken an MRI scan and also notified our local CPN. As they were concentrating on my father, it wasn't until I got home that I realised that my mother was similiarly affected.

Re driving - this was a very difficult problem. My father drives, my mother not. He saw is as an attempt to take away his freedom, but he was becoming a menace on the roads. After one incident where he stopped dead on a roundabout, [forgot which was he was supposed to be going], I decided that in the interests of our and other motorists' safety that I just had to have his license revoked. I enlisted the help the Consultant Psychiatrist to explain the problems and to convince him that he had to give up the car. It took several months before he came to terms with it.

Jude

 

[Ruthie]

RE: Driving

Dear Chris

I think it is a legal requirement that you have to inform the DVLA and the Motor Insurance company if there is a change in health which may affect the ability to drive - and suspected Alzheimers or other dementia is a significant change. If your Dad were to have an accident in his car and injured someone or did damage to another car, I presume the insurance company would deny their responsibility to cover any damages (which could be very large if personal injury or death resulted from the accident). This of course is quite apart from the terrible distress caused if he did injure anyone.

My husband loved driving, but well before he had a firm diagnosis his sense of direction and decision-making (eg which exit to take from a roundabout) was beginning to be affected, although his ability to drive the car was OK. I gently pointed out that we would have to tell the Insurance Company and DVLA, and he agreed. The insurers wouldn't renew his insurance until he had taken a special driving test arranged by the DVLA, which took a couple of months to come through. He was found to be not safe to drive, which much to my surprise he took in good grace, and admitted that he had found it very difficult lately. I think he was actually very relieved not to have to drive again, and I certainly was relieved not to have to sit in the passenger's seat again!

It would be worth checking out with the DVLA what the rules are, or seeking advice from the Alzheimers Society.

Sorry - I know it won't be easy for you to go into all this with him, but it's another of those unpleasant tasks that have to be done.

All best wishes

Ruthie

 

[Nutty Nan]

Dear Chris,
Just a couple of brief points:
The book 'Learning to Speak Alzheimers' by Joanne Koenig-Coste, which has been mentioned in other threads, is a very good read and might be a way of broaching the subject with your mum (you could read it first, then pass it on at an opportune moment with an appopriate comment).
As for driving: my husband has not driven for over 18 months now, but still says he will buy another car .... I never had the heart to suggest he should not drive any longer, even after I had to rescue him on a couple of occasions from places where he was completely lost. I am so grateful that he never caused a major accident. If you need a smile: he was actually stopped by the police for driving too slowly! He talked himself out of the situation, but we all know that he was just nervous on one of his bad days. To cut a long and painful story short: my son-in-law helped me to disable my husband's car, and we eventually enlisted the help of our friendly village garage man, who towed the car away and then informed my husband with a very serious look on his face that it really was not worth repairing any more. The sick feeling of guilt is still with me, although I know that we did the right thing, but we can't help to make him feel better about himself ...
My husband has always taken care of his family - it's not surprising that he hates the feeling of helplessness he now experiences on a daily basis!
Good luck - the above mentioned book helped me to feel a little less guilty for all the under-hand things I do these days to keep things running as smoothly as possible.
All the best, Carmen

 

[Jude]

Dear Carmen,

I had a bit of a chuckle reading about your friendly garage chap and disabling your father's car. Wish I'd thought of that one.

Sometimes I feel I'm taking a crash course [no pun intended] on how to be devious and underhand! I always cross my fingers behind my back when I'm telling 'white lies' to Dad.

Some of the latest have been that banks no longer issue monthly statements by post as all the information is now on computer [oh really?] and as my father can't understand the computer, well.....

Another is that the local bus service only runs twice a day - once early morning and late afternoon so going to the bank is not an option. Also that our local town of Guildford has been geographically relocated to some 'x' miles further away [in Kent perhaps?] which makes it extremely difficult to drive to the bank as well. Our local council has also undertaken some extremely serious repair work on ALL of the car parks in Guildford rendering parking virtually impossible for some months to come. [I don't think the Council would be too pleased with me for spending so much of their annual budget in this way really].

I've also developed a dreadful case of selective hearing when it comes to answering awkward questions and am becoming quite proficient with changing subjects at incredible speed and inventing diversions.

None of the above makes me feel particularly good about myself at all, but as you say, it really helps things tick along smoothly.

Jude

 

[sue h]

Dear Chris,
Re: Telling AD sufferers about their condition. I have never discussed my Dads illness with him. After a bad incident last October he momentarily realized that he had a problem and not everyone else and agreed to see his doctor. A proper diagnosis
has still not been made, which is frustrating as they first went 4 years ago and again the beginning of last year only to be fobbed off with 'it's just his age'. My Mum is not one to be pushy! Anyway as you quite rightly pointed out things are quickly forgotten (usually immediately), and he has no recollection of the CPN visiting him to do a basic assessment. He has yet to see an old age psychiatrist , my Mum postponed that after my Dad started saying that he was going to be locked up in a mental home. After recent events (see bizarre evening) it looks likely that my Mum will agree to taking him, well I'm working on it. I suggested her ringing the CPN and arranging another appointment but not telling him. We'll see what happens. Watch this space!
I am interested to read the replies you get regarding extra help and future care etc. as I'm very much in the same situation as you. My Mum has only in the past year started to face reality and all the time she can manage she'll struggle on regardless. I am very worried about her as at 77 she is not only a carer to my Dad but also to my Uncle (her brother) who they live with, who has just returned home from hospital after suffering a major stroke (he's 87). Some days she's in complete dispair of the situation and has said to me that she must have done something very bad in a previous life to deserve this!
About the driving issue - my Dad only gave up his car last summer, he was a danger on the road especially at roundabouts, he used to stop on the roundabout to let people out! Very nice but not quite right!! It was only after he received the bills for his insurance and tax that I talked him into getting rid of the car saying it wasn't worth paying all that money as he only did 400 miles a year. I said I would take them shopping every week and anywhere else they needed to go. It took a few months for him to stop looking for his car and car keys or saying he was going to buy another one. Been very quiet of late but always says how nice my car is!
Good luck
Sue

 

[Izzy]

Hi Chris - my husband was diagnosed around two and a half years ago. He is still in the very early stages - probably because Aricept is allowing him to function at a high level. His short term memory is very bad but we are really lucky in that he can still socialise, hold converstations, carry out all of the DIY tasks (and housework!) that he used to be able to do. He does know he has AD. He knew his mother had it and he knows that his own memory is very bad and that he takes aricept because of this. I have found it easier in that he knows his diagnosis. He has recently gone on to taking anti depressants and these have help lift his mood remarkably. All in all I know we are very lucky at present and this forum has taught me to value each and every day for the good things it brings. The rest stays in perspective because I know from this site how well off we are. When things start to get worse I will have wealth of knowledge behind me which I have gleaned from the site. Not to mention the support of the contributors.

He held on to his driving license to begin with although he didn't drive again from the day he got the diagnosis. He was already beginning to find it a fairly stressful experience. When it was due to be renewed we noted down that he had AD. They then contacted his consultant and doctor and eventually he was told it would not be renewed. I think he could have gone through a driving test etc but he decided he didn't want to do this and was happy to let me do the driving.

Cheers
Izzy

 

[chrisc]

Hi All

Thank you for the replies, thoughts and suggestions you have made.

Mum's going to the GP later today to get Dad on to medication, so we'll have to wait and see what the results are. It would be great if he was one of the patients who responded particularly well to this type of treatment. We'll just have to wait and see. When Dad had his MRI last year one of the comments from the specialist was that there was a surprisingly large amount of cell loss, so perhaps too much damage has been done already, I guess if I assume the pills won't do much then any result will be a positive.

I talked to Dad on the telephone yesterday, Mum told me he was having a bad day and that he's had quite a few of those over the last week or two. I asked him how he was and he told me he was "mostly rightly" - I think he meant to say that he was alright.

He said the house was full of children so he was staying out of the way by watching TV, I told him I didn't blame him and I'd do the same, best to stay out of the way.

There aren't any children in his house and I hate this bloody disease.

 

[susan]

Dear Chris
I have read your letters wirth interest, as it brought back the problems i had with my dad 3 yrs ago. My dad hated doctors always the answer - there's nothing wrong with me and that was before AD was diagnosed 10 yrs ago!
When he started to forget the way to my house and what he went to the shops for he laughed it off. Mum and Dad had their 50 th anniversary last year sadly the disease wrote off any celebrations. I remember lying to dad to get him to the hospital for a diagnosis - told him he was going for 69 yr check up - new policy for retired people - yes he believed me!!!
Before he was admitted to the nursing home we had to have dad sectioned for his own safety - the worst day of my life - try not to leave it until itts too late to talk to dad about what is happening, as things do get worse and sadly there is no easy answer - sometimes the truth hurts. I don't mean to sound hard, but i know we left it too late - mumkept saying she could cope- but she reached breaking point with his aggressive and odd behaviour - like up all night moving home to his wife as he didn't recognise mum any more.
This awful disease takes many paths and the route it got my dad may well be very different to yours.
If i can help any more please write, take care, enjoy the good times while you have them regards Susan

 

[chrisc]

Hello

Everyone, thanks again for your replies and kind thoughts, I have found it very useful and have also related some of the comments to my Mum (who is the real carer).

I have a couple of questions for anyone who has experience with Aricept. My Dad started taking it about 2 weeks ago - his initial prescription is for one month. The GP told Mum he'd try it for a month but due to the expense he would like to feel there were benefits and no serious side effects for Dad before repeating the prescription.

So far so good, there are no obvious side effects, but in terms of benefits I'm afraid it's not as obvious as we'd hoped, to be fair there has been no real further deteriation in Dad's condition, but then 2 weeks is a short time! What we had hoped was that Dad might have more good days than bad once he started taking the drug, the reality so far seems to be that he's pretty much the same as before, maybe even a tiny bit worse.

The question I have are as follows, has anyone seen an obvious change in condition after the start of Aricept, or is it really more likley to simply prevent further significant deteriation? If the GP/my Mum feel the drugs not doing anything after the first month I guess there is a good chance the prescription will be ended, if so could we expect a sudden fall in condition, has anyone with experience of the drug subsequently had it withdrawn and if so to what effect?

Sorry for all the questions and thanks in advance for any advice you can offer. Chris

 

[Jpr]

the alzheimers org fact sheet on aricept may help

 

[Jude]

Dear Chris,

My father has been taking Aricept for 4 years now. It did take about a month before there was any significant difference, but once the drug kicked in, the change was absolutely amazing! From being totally confused and having hallicinations, my father became pretty lucid most of the time - except of course when he was tired or agitated. The hallicinations stopped completely. It was like having him back 60%. After a couple of years, he began to become confused again, so the Doctor increased the daily dosage from 5mg to 10mg and he has maintained very well up until now.

Good luck!

Jude

 

[Izzy]

Hi there,
My husband has been on aricpet for two and a half years now. He is still in the very early stages but I don't know if that's because of the aricept - I presume it's that which is keeping him stable. His short term memory is not good but along with anti depressants the aricept seems to be giving us a very good life! He's on 10mg - the dose went up to this after only the first 3 or 4 months. For a while at the beginning his behaviour was difficult but this seems to have improved a lot - especially since he has been taking Cipralex to help with depression - that seems to have worked wonders.
Cheers
Iz