What next?

tintin

Registered User
Apr 4, 2007
2
0
Warwickshire, UK
Hi, this is my first post and in fact the first time I will have 'spoken' to someone outside my family about my father's diagnosis. My father will be 71 in May and was prescribed Aricept just before Christmas 2006. He's pretty fit for his age and until recently has frequented the gym and played golf a couple of times a week. His golf has been curtailed since he surrendered his driving licence.

On the subject of his driving licence, this is something he seems to hold my brother and I responsible for. Basically, if we hadn't taken action over his memory problems then he woudln't have been referred to the memory clinic and wouldn't have been diagnosed with Alzhiemer's and so would still be able to drive. I got a railcard for him which he uses to visit a close friend every week but he seems fixated with getting his driving licence back. Is this likely? I feel like I should tell him it's not going to happen but it seems a bit brutal. I'm not even sure if he knows he's got Alzheimer's. He seems to think if he keeps taking the medication then things will improve to the point where he can drive again.

There are so many things I need to find out about - life expectancy, enduring power of attorney, home help. I'm not sure all of this is relevant right here right now but it would seem sensible to make provision for the future. It's difficult though, if he holds me responsible for him losing his driving licence then he's not going to thank me for sorting out power of attorney and home help when it's required.

Apologies for such an unstructured ramble, it's not what I had in mind when I sat down to write this. If there's any help or advice anyone can provide I'd be very grateful. If anyone has experience of my local support group (South Warwickshire) I'd be glad to hear from them and find out about the appropriate forum to attend with my dad to get some more help and information.
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
Hi tintin, welcome to TP

The problem with talking about prognosis is that we have a saying on here: "if you've seen one person with alzheimer's disease you've seen one person with alzheimer's disease". Trite, I know, but very true. I very much doubt that the aricept will cause him to improve: the generally accepted idea is that it can slow progression, but not reverse the damage. There are a number of threads on the boards about driving: if you've manged to get him to surrender his license, then you're doing better than some of our members. It will probably continue to be an issue, unfortunately.

The one thing that I would strongly suggest you do now (i.e. not put it off) is get an enduring power of attorney drawn up (EPA), although the law changed at the beginning of April and I don't know what the current state of play is.

See here anyway

http://www.alzheimers.org.uk/After_diagnosis/Sorting_out_your_money/info_epa.htm

I say don't put it off, because deterioration could mean that he would not be competant to sign, and no one can say when theat might happen.

I'm sure others will be on soon to welcome you

Jennifer
 

rache3185

Registered User
Aug 3, 2006
12
0
East Yorkshire
what next

Hi tintin,

What a interesting question, what next ?- afraid to say nobody has yet written the book yet. I have found myself in the same position as you regards the driving issue, Dad (67)was diagnosed 4 years ago and also at that time had a slight car accident and it was down to us, the family, to suggest that it was maybe time to stop driving - very difficult time, but, over time it does become less and less of an issue. We also set up a power of attorney for peace of mind really, we are in the process of registering it now. It doesn't get any easier, try and concentrate on the good times, they become very VERY important as things progress and I don't know what your situation is but make sure the carer gets time to themselves later on.

this website is great and talking point really lets you open up and can prove very useful

Take care

Rach:)
 

Margarita

Registered User
Feb 17, 2006
10,824
0
london
welcome to TP :)

I never had that issue with driving with my mother, but did when you say


Basically, if we hadn't taken action over his memory problems then he wouldn’t have been referred to the memory clinic and wouldn't have been diagnosed with Alzheimer’s and so would still be able to drive.

My mother blame me for every thing under the sun, I use to think she was in denial, still don’t know the real answer why, just that I read that they do lose they logic to understand reasoning, but when your living in it its so hard to believe that because they look so normal .. I would try to convince her I was right , doing it for her own good and then I seem to be getting through to her she was agreeing , but then it was lost she go back to not understanding and we was back to square one. So I would walk out of the room because it can get so frustrating


Then after a long while with mum it seem to me she lives in another realm in her mind and no amount of reasoning is going to make her see the truth of reality , so I learn to turn it all around on me .



5 years on there still nothing wrong with my mother she tell me , its only because her legs hurt her
Few times few years ago I told her what happening in her brain compared it to cancer of the brain to try to make her understand what going to happen in the future , she seem to listen , then forget I suppose then tell me its all down to her leg .


You know your doing the right thing, looking after your father safely. Sound like your doing a good job
 

noelphobic

Registered User
Feb 24, 2006
3,452
0
Liverpool
jenniferpa said:
The one thing that I would strongly suggest you do now (i.e. not put it off) is get an enduring power of attorney drawn up (EPA), although the law changed at the beginning of April and I don't know what the current state of play is.

See here anyway

http://www.alzheimers.org.uk/After_diagnosis/Sorting_out_your_money/info_epa.htm

I say don't put it off, because deterioration could mean that he would not be competant to sign, and no one can say when theat might happen.

I'm sure others will be on soon to welcome you

Jennifer

I think the change to a Lasting Power of Attorney has been delayed until October. So an EPA could still be drawn up at the moment if it was thought appropriate.

Brenda
 

blue sea

Registered User
Aug 24, 2005
270
0
England
Hi tin tin

I can't emphasise enough how important it is to do the power of attorney as soon as you can as once your dad's mental condition detreriorates too far it is too late. Without power of attorney financial matters become really difficult - you have to go to the court of protection to get agreement for everything. For example there may, sadly, come a point where you have to take over all his finances for him. Although there is a new version now, which includes medical wishes, I think the older, simpler version can still be used. All the info will be on this site, I'm sure. We downloaded the forms from the internet (Public Guardianship site)- it was very simple to do. Dad was quite happy about it - we just explained that we felt that as he was getting older it would be a sensible precaution so that, if necessary, we, as family could take decisions for him rather than strangers. We involved all the family members in the discussion.

I would try not to worry too much about driving issue. Basically it's not safe for your dad to drive now and that has been determined following medical evidence. The reality is that it is extremely unlikely he will be allowed his license back but probably not helpful to tell him this. I found with my dad it gradually became less of an issue and eventually faded away altogether (once we got rid of the car and he couldn't see it!). Even when he became seriously ill with the dementia, he would still have driven, I'm sure, had someone given him the keys and access to the car!

In many ways the early stages of this illness are the most challenging for the family to deal with (though every stage has its unique challenges!). I tried to keep dad as independent as possible for as long as possible and tried very hard to tell him the truth about everything. However as he deteriorated (he died a year ago, by the way) I realised it was kinder often to deflect the conversation from difficult topics, or even tell a few white lies, or part of the truth. I never did tell him (nor did any doctor) that he had dementia but that is a decision that everyone has to take for themselves, depending on how much they think the person will understand the diagnosis and the effect the knowledge would have on them. I found it easiest to talk about the illness in terms of the problems it caused, so I would say we were seeing the doctor to see if we could get help for his memory problems or for his night time wandering. Of course dad didn't really see these as problems so that was only a partial success!

It is very hard for all the family members, but particularly the one/s who have to take on the role reversal of gradually becoming their parent's parent. All the decisions you have to make to protect your dad and ensure his well being (and that of those around him) are often not right or wrong, just the best ones you can make in all the circumstances. When you are acting out of love, you constantly question whether there is a better way, but so often you are left with few choices, and you have to try to avoid heaping guilt on yourself. I think it would be really sensible for you to find out as much as possible about the practicalities - the fact sheets on this site are a brilliant help as I'm sure your local association would be too. Every individual has a different stage of progression through the illness. In some cases that is very slow, so be positive and hope that your dad will have many years of being rather awkward to deal with at times, but retaining his main capabilities and getting enjoyment from life. However should the illness progress more quickly, at least you will have the information you need to help you. Unless there is some underlying physical illness, you will probably find that no doctor will give an estimate of life expectancy. So much is unknown ahead thst my advice is to get genned up on all the factual info, make sure your dad's doctor keeps you fully involved and then try not to worry, just deal with each situation as and when it arises.

Have rambled on a bit - sorry! When dad was alive I used to find this site such a huge help, practically and emotionally, and I'm sure you will too. I hope that some of my experiences can be of help to those of you who are starting out on this journey.

Blue sea
 
Last edited:

Grannie G

Volunteer Moderator
Apr 3, 2006
81,445
0
Kent
Hi Tintin, welcome to TP.

My husband was diagnosed in 2005, but still has hopes he`s getting better, especially on a good day. He cherishes his driving licence and even though we no longer have a car, he is convinced he will be driving again one day.

Everyone else here has given their own interpretation of Alzheimers and they are all different. They are all correct.

We are only just getting an EPA, because although my husband was fit to sign, he thought I was taking over his life and depriving him of his independence, so there was no way he would accept the idea. Only now, as a married couple, I heard we can get a mutual EPA and he has agreed to that.

What I am saying is you know your father more than anyone, know how affected he is by Alzheimers, know how much he is still clinging to his self esteem and know how far you can go. You have to play it by ear. Find out as much as you can, from TP members, from the AS and all available Factsheets.

Keep posting and reading the posts of others and you`ll get through.

Take care
 

blue sea

Registered User
Aug 24, 2005
270
0
England
Sylvia's words are very wise. Although getting an EPA done is really helpful, sometimes you do have to put it off as the person sees it as a symbol of their growing dependancy on others. Everyone who has this illness is unique and so in the end you have to adapt all the advice in the light of your knowledge of the person.
Blue sea
 

tintin

Registered User
Apr 4, 2007
2
0
Warwickshire, UK
Thank you all for your kind words and good advice. It looks like this forum will become an invaluable source of advice and support over the coming months and years.

It's a comfort to hear from people who have been through or are going through similar situations with their own loved ones.

I've printed off some of the factsheets to read and share with my dad and hopefully we can make some progress in dealing with the issues of his illness as they arise.

Thanks again and I shall continue to use the forum for information, advice and support.
 

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