Discovered too early??

[Brenda230]

It seems to be very different when it is your spouse/partner who has a problem. One 'problem' is that you may notice things very very early on.
I thought my husband just had old 'age forgetting,' but then occasionally the forgetfulness would seem somewhat extreme.
His doc just puts it down to Mild Cognitive Impairment. We joked a bit and said he's always had it as he has, all of his life, mislaid things.
We were daft enough to tell the DVLA when he had to apply for his driving licence renewal at 70, and the result was that he lost his licence for 6 months. That affected him really badly, and I mean that - he was devastated. He lost his confidence altogether, not to drive but in general life. He subsequently took a driving test and passed with flying colours which bucked him up a little. The DVLA grudgingly gave him a licence but for 1 year only. It took about three months to reapply, as they were very nitpicking about eye tests and so on.

Anyway, apart from all of that, it's been 2 years now and he no different from then. Two docs have told me that changes would be very gradual, and that it can vary from person to person. They say it can be anything from 5 to about 15 years.

What I would say is, I wish I had not been so vigilant now. He would not have had any difficulty with his driving licence, and he would be more like his old self. The result of all of this is that he is now drinking a lot more than he ever did,because the whole idea depresses him. Beer, wine and worse of all he's started on rum.

So surely he would have been better off if we had noticed nothing and carried on as usual?

 

[marsaday]

Very true. There's a lot in the media about early diagnosis but here you have described the flip side. Maybe that's why the medical profession can take a very long time in coming to a diagnosis. No wonder people try to keep it a secret for a while.

My Mum was diagnosed with MCI about 5 years ago and didn't tell any of us. She was always forgetful etc and we put small changes down to old age. But after that she did start drinking more and getting herself into spots of bother, although that could have been the illness too. But I think it was her way of coping with her diagnosis alone and the worry of her uncertain future.

On the other hand an early diagnosis can give access to much needed services and medication (of debatable value). For Mum- it did give her access to a day centre early on, which she was happy to go, to and the day centre staff said that the earlier they get people in the longer they retain their faculties (again IMO that is debatable). Medication came at a later stage when we could no longer ignore the changes.

(Mum's diagnosis of Alz came about 2 years after the MCI and now-3 years on-very much declined and in a nursing home since Sept)

 

[sleepless]

I noticed it early on with my husband, so he was diagnosed in 2003.
At the time I feared it could be down to brain tumour, cancer, who knew what?
So a diagnosis of Alzheimers' and immediate prescribing of Aricept 11 years ago was the right way to go in my opinion, as we had 10 good years -- this year has seen a decline, but no-one can take away the previous 10.
We had to inform DVLA and he kept his driving license up to 2011, (re-applied for each year) until on my advice he didn't re-apply in 2011.
DVLA presumably asked his Consultant about it each year.
He only had one assessment, about 3 years in.
In my opinion, the driving ability issue is too grey and random, further adding to the stress for carer and cared for.

 

[Countryboy]

It seems to be very different when it is your spouse/partner who has a problem. One 'problem' is that you may notice things very very early on.
I thought my husband just had old 'age forgetting,' but then occasionally the forgetfulness would seem somewhat extreme.
His doc just puts it down to Mild Cognitive Impairment. We joked a bit and said he's always had it as he has, all of his life, mislaid things.
We were daft enough to tell the DVLA when he had to apply for his driving licence renewal at 70, and the result was that he lost his licence for 6 months. That affected him really badly, and I mean that - he was devastated. He lost his confidence altogether, not to drive but in general life. He subsequently took a driving test and passed with flying colours which bucked him up a little. The DVLA grudgingly gave him a licence but for 1 year only. It took about three months to reapply, as they were very nitpicking about eye tests and so on.

Anyway, apart from all of that, it's been 2 years now and he no different from then. Two docs have told me that changes would be very gradual, and that it can vary from person to person. They say it can be anything from 5 to about 15 years.

What I would say is, I wish I had not been so vigilant now. He would not have had any difficulty with his driving licence, and he would be more like his old self. The result of all of this is that he is now drinking a lot more than he ever did,because the whole idea depresses him. Beer, wine and worse of all he's started on rum.

So surely he would have been better off if we had noticed nothing and carried on as usual?

Hello Brenda230 great to read you're post this morning and how true you're comments on the reality of the situation once a person with dementia has notified the DVLA and their the clutches of those bureaucrats , I remember the problems your husband was having with DVLA hopefully its all been sorted for him now , I agree with you also the worst thing I ever did was to inform dvla myself as you may remember I was having a few problems myself and only finally after 12 years of battles with DVLA it had to come with Court action to get it resolved so obviously 12 years for me to prove them wrong that surly isn’t right . great that you support you're husband I try to tell any one in our situation not to give up but unfortunately a lot of people with dementia rely on others for guidance whereas I fought my own battles

Cheers Tony xx

 

[stanleypj]

I think you've raised an important point Brenda.

The way in which dementia is viewed is often contrasted with the way other serios diseases are. But early diagnosis of many cancers and various other serious diseases can be life-saving. Early diagnosis of any disease which causes dementia can't.

I appreciate that early diagnosis may allow some people access to services that they may benefit from and may also allow access to medication (though, as marsaday says, this is often of debatable value).

More importantly, some carers and people with dementia do become depressed when a diagnosis is made and this can affect the progression of the condition.

It took many years for the memory clinic to diagnose my wife and during that time we were grateful that she didn't have a death sentence hanging over her. The difficulties she had were no less severe but we coped with them and did our best to carry on living 'normally' for over a decade.

To my mind, the case for early diagnosis is not an open and shut one. Especially when the service and support available often leave so much to be desired.

 

[kayze]

It seems to be very different when it is your spouse/partner who has a problem. One 'problem' is that you may notice things very very early on.
I thought my husband just had old 'age forgetting,' but then occasionally the forgetfulness would seem somewhat extreme.
His doc just puts it down to Mild Cognitive Impairment. We joked a bit and said he's always had it as he has, all of his life, mislaid things.
We were daft enough to tell the DVLA when he had to apply for his driving licence renewal at 70, and the result was that he lost his licence for 6 months. That affected him really badly, and I mean that - he was devastated. He lost his confidence altogether, not to drive but in general life. He subsequently took a driving test and passed with flying colours which bucked him up a little. The DVLA grudgingly gave him a licence but for 1 year only. It took about three months to reapply, as they were very nitpicking about eye tests and so on.

Hi, I felt the opposite, diagnosis took a long time, like you I noticed something was wrong with my husband

Anyway, apart from all of that, it's been 2 years now and he no different from then. Two docs have told me that changes would be very gradual, and that it can vary from person to person. They say it can be anything from 5 to about 15 years.

What I would say is, I wish I had not been so vigilant now. He would not have had any difficulty with his driving licence, and he would be more like his old self. The result of all of this is that he is now drinking a lot more than he ever did,because the whole idea depresses him. Beer, wine and worse of all he's started on rum.

So surely he would have been better off if we had noticed nothing and carried on as usual?

Hi,
I felt the opposite, diagnosis took long.
I knew there was something was wrong with my husband, we had quite young children so I was so scared for them, he was accusing them of stealing his money,getting quite aggressive. I tried to get help for four years before he got diagnosed, I thought it was me actually going mad.
People said don't be silly he is fine. It took him to go missing for three days and ending up in hospital.
I was so relieved when the diagnosis came.

 

[Countryboy]

some good information attached to this thread it just shows how the dementia for some it only has a slight decline whilst in others in others its progresses very quickly

 

[Barlemo]

There have been times I've regretted getting diagnosis as there is so little that can be done and so little help available. I've wondered if it would have been better to carry on in ignorance, making the best of it and ignoring the struggle my husband was having with certain things. But then I remind myself of the frustration, irritation and anger I felt at him not pulling his weight as I saw it, at him not trying to do more, and covering up for him with friends and family. It was a tremendous strain; and what he must have been feeling God alone knows - and I remember that behind the shock and sadness we felt on diagnosis that there was also relief, an explanation. So overall it was a good thing I think.

 

[creativesarah]

It's a tricky one this personally I am glad I know what I am fighting and I will fight it all the way
Giving up driving was a great blow and I still rail against it but I couldn't live with my self if I caused someone else to be injured by my driving

Everyone is so different (thank goodness!) I have no family support at all but I have many friends who are incredibly supportive and I do what I can while I can.

I do lots of brain training exercises on my phone and play scrabble on it too, which helps my speech ( hopeless if I decide to play a game while I am on the loo! people ask why I am in there for so long well now I have let the cat out of the bag!)

Today a friend who has Alz took me to our local memory cafe.

I was relieved to have a diagnosis as it was really frightening deteriorating and having no idea why and I was relieved it wasnt a brain tumour, and now people know to give me a bit longer to do things. I have remained stable for sometime now and in some areas I have made a bit of progress. I still have good and bad days esp if I get overtired.

Much support to you and your husband

Sarah

 

[Countryboy]

It's a tricky one this personally I am glad I know what I am fighting and I will fight it all the way
Giving up driving was a great blow and I still rail against it but I couldn't live with my self if I caused someone else to be injured by my driving

Everyone is so different (thank goodness!) I have no family support at all but I have many friends who are incredibly supportive and I do what I can while I can.

I do lots of brain training exercises on my phone and play scrabble on it too, which helps my speech ( hopeless if I decide to play a game while I am on the loo! people ask why I am in there for so long well now I have let the cat out of the bag!)

Today a friend who has Alz took me to our local memory cafe.

I was relieved to have a diagnosis as it was really frightening deteriorating and having no idea why and I was relieved it wasnt a brain tumour, and now people know to give me a bit longer to do things. I have remained stable for sometime now and in some areas I have made a bit of progress. I still have good and bad days esp if I get overtired.

Much support to you and your husband

Sarah

I totally agree with you Sarah after my dementia diagnoses I didn’t change in anyway and even now 15 years later I haven’t my dementia is the same , but after having the word Dementia written on my medical records that word has been a curse to me and caused me so much aggravation and upset to my personal way of life that is unimaginable for goe public to understand , I had to fight to : keep my Job, fight to keep my Driving License, fight with membership of various organizations, once that word dementia has been attached you're on your own give up or fight well you know what I did , I didn’t give up that’s for sure , No Basic Rights For Us with dementia