time scale

[egg]

Can you bear with me if I ask another question?

If not then please just don't reply.

Well here goes..

Is anyone able to help me on how long my hubby will be able to do much? He is only starting out on the AD road but he very very very regularly talks about what he wants to do before he can no longer do it (hope that makes sense!). And I am going to have to be the one who decides whether we frantically rush around doing all those things or attempt them in a more leisurely fashion. For example as we drove home from our little holiday in Wales I was trying to be optimistic and cheerful and give him something to look forward to and suggested we plan to go to Scotland next Easter (we have never been and he often talks about going there ) - fine - but then the rub - hubby says but 'will I be well enough?'

Now I know no one can say about time and the doctor won't say and the nurse won't say (and hubby doesn't really want to know) and I know everyone varies etc etc but if anyone could tell me what they found I would find it very helpful.

Many thanks indeed

egg

 

[Jude]

DEar Egg,

That's one unanswerable question! Is your husband taking Aricept or any other medication for his AD? I only ask because my father has been on Aricept for the past 5 years now and on average, I would say that he is no better nor worse than then. His AD seems to have stablised very well and for much longer than I expected really.

In my opinion, I think it would be a great idea to continue to make plans for future holidays. At least if you did have to cancel at the last minute, you will have both had the enjoyment of planning and anticipation of the event.

Hope that helps a bit.

Jude

 

[Brucie]

Make hay while the sun shines

There is no way of knowing as everyone has a different story.

I found that I was able to plan things - but knew eventually when the planning had to stop.

Do as much as you can, as soon as you can - that would be my advice.

You will of course be able to plan in the future, it is just that the plans will be a little less. It is a moving target. something that would have seemed nothing a few years ago is now everything.

Best wishes

 

[Norman]

Egg
my wife has been on Aricept for 7 years now.
At first we managed our holidays abroad always looking forward to the next year.
The holidays abroad have finished now as have the coach holidays.
I have settled now for an apartment holiday not too far from home then if it goes wrong it is not too far to get home.
One time in the lake district wifey played hell up, hell hole etc etc etc,that is why we don't go too far.
we are due for a week away soon,fingers crossed.
This is day to day and year to year!!
Norman

 

[egg]

wow thanks to Jude, Norman, Bruce

thank you so much for bothering to reply (tear in my eye!)

yes your experiences help a lot because you are all talking about at least going somewhere and doing some things for some years where as the last couple of days my hubby has been convinced that he will never be able to do anything or go anywhere again.

That is so helpful.

I know its all different for everyone but it may help me to be balanced and neither leave things too long nor rush madly at everything and end up with both of us even more stressed and exhausted than we are now.

Yes, he is on a trial of aricpet to see how he goes and the review is Friday for the first 6 weeks of it.

We have never been abroad so that may well have to remain one of life’s things that never got done but we do enjoy our little trips in England and Wales and hopefully in Scotland.

I think we may try to keep to self-catering – more work but less necessity to interact with other people and for him to feel embarrassed if he gets something wrong. – but that is sad because we need interaction.

Bruce I know what you mean – over the past five years my expectations of many things have already gone down and down – I am glad for small blessings and hope I can stay that way as I know I will need to!

egg

 

[Jude]

Dear Egg,

Aricept takes a week or so to 'kick in'. After that you should see quite a significant improvement in mood. If your husband starts feeling very ill and wanting to vomit, then that's a signal that he is intolerant to the drug. You will find that out very fast indeed! So hopefully he will be okay with it.

Jude

 

[Izzy]

Dear Egg

My husband has been on Aricept for 3 years now and I think it has helped a lot (along with the anti-depressants). We still manage our holidays and we both enjoy them tremendously. I always make sure that he never has to go anywhere by himself as he would be likely to forget where he had to return to! Having said that we are lucky in that we have now reached the stage that we can, to a certain extent, put aside the AD and enjoy ourselves- it has become second nature to organise things so that he isn't feeling insecure. As long as he says he wants to go on holidays and do things together we will continue to do them. (If you can stand it there are two pics of us in Egypt in the Team Room forum - just to prove we can still do daft things together even thought he has AD.) I think it will become clear to me when things start going less well and I'll adjust what we do to suit until we have to stop. It took two years for him to get the anti depressant (Cipralex) but I do feel that it has helped him be less anxious. I just appreciate that we are lucky enough to have had three years where everything is relatively OK. I know from the posts on this forum that many people are much worse off than we are and I am determined that we will enjoy what we have without sticking heads in sand about the future.

Sorry - another ramble!
Cheers
Izzy

 

[jackie w]

i know this is an unaswerable question but am going to ask anyway. my mum had a diagnosis of ad last year at the age of 61 and has deteriorated quite rapidly she doesnt talk any sense at all now and the the only people she regonises are my dad (her carer) and myself (daily visitor).My dad has recently had a heart attack brought on by stress im sure,my question is,how long before my mum gets to stage where she goes into care?Our GP says that he cant do anything until my dad says so , my dad says its his place tol look after her(stubborn). At this rate my dad is going to go before my mum

 

[Brucie]

Hi Jackie

Sorry to hear your story, though it is as you may realise, not unusual.

Early Onset patients do seem to deteriorate faster in the early stages, especially if there is vascular dementia in combination with AD.

Your Dad will of course want to care for your Mum himself. What he needs to realise is that, if he suffers major illness suddenly, then your Mum will be in a difficult situation, where her care needs have to be accommodated as an emergency measure.

It would be much more reassuring for you - and Dad - if some groundwork could be laid, at the very least. You might identify somewhere where Mum could initially go to a Day Centre, but that might accommodate her permanently in the longer term.

Husbands and wives get very worried about their responsibilities to their spouses. A key message is that one major responsibility is to ensure Mum is alright in the event of his illness. The last thing he will want is for her to be at the mercy of unknown agencies if he is temporarily not around.

 

[Brucie]

Post script

Silly me - I forgot to say that Dad also has a responsibility to himself - and to his family - to care for himself!

 

[Jude]

Dear Jackie,

Brucie has just again highlighted one of the major problems that we have been talking over this past week, which is how do we keep ourselves sane and healthy as carers? If we collapse, then the whole system caves in. You need to investigate some fall back positions for your father as soon as you can.

The first thing to do is to contact your local Council Social Care Team who are part of Social Security. You can do that by phoning the Altzheimer's Help Line. Once you've had a Care Assessment, then you will be able to have access to all sorts of assistance, such as Care Vouchers which can be redeemed for respite care, etc.

Also, do contact your local Crossroads organisation. They are very helpful as well.

Best wishes, Jude