Should I tell people or not?

[Annie Laura]

My husband is in the midst of tests now but it's clear that some kind of dementia will be diagnosed. It's just a matter of exactly what kind. I've known for some time now that this was going to happen; I've been keeping notes for a few years now. They started as an effort to be objective about his sometimes worrying behaviour - was this just 'ordinary' cognitive decline and was I being melodramatic about it? It's now clear that I wasn't. His short-term memory is often devastatingly bad now. Other kinds of memory are better and his verbal (and mathematical) skills remain high.
Thing is that apart from my sister (who doesn't live nearby) no-one else knows that this diagnosis is imminent. It has been possible to paper over his bad memory failures (though I do sometimes wonder whether some people do have inkling).
I would welcome advice from everyone about how public to go on this when the diagnosis comes through? My instinct is to quietly tell people immediately - his sons, family, friends, almost anyone we have to deal with really, in order to be honest and to avoid problems or distress when people assume he is the person they knew or someone who is 'normal' and will remember things (occasionally he will but much more often he won't). And to maximise support for us both. (Thankfully I organised LPA some time ago and I can formally take over whenever I must. Informally I handle everything now anyway.)
But part of me wonders if being open will mean that people shun him and us more, because they are afraid or embarrassed or they just want to distance themselves from unpleasant knowledge. Once the 'cat is out of the bag' we can't get it back in. What's your experience on this?

 

[Beate]

I would tell people. It's better when people know what they are dealing with and why he is the way he is. If they shun you, they are not worth knowing anyway, but often it's just because they are unsure how to react.

 

[Kevinl]

It has been possible to paper over his bad memory failures (But part of me wonders if being open will mean that people shun him and us more, because they are afraid or embarrassed or they just want to distance themselves from unpleasant knowledge. Once the 'cat is out of the bag' we can't get it back in. What's your experience on this?

That Annie is the sixty four thousand dollar question (as they say). People react very differently and sometimes not in the way you'd expect but all I can say is it's probably better to tell them on your own terms and tell them the facts than let them find out through the grapevine.
My wife and I had many friends before her diagnosis, now they're few and far between but it's been an eye opener who went and who stuck around, had it been any number of things wrong with her other than AZ I think the situation would be a lot different.
I think part of planning for the future is finding out where you stand with family and friends then take it from there, it'll come out sooner than later and if it looks like you've been trying to hide it people may be more reluctant to say anything thinking they're respecting your "implied" privacy, if you're not prepared to discuss it with them how can they start to discuss it with you?
K

 

[Lawson58]

Initially I would tell those who need to know - family and those who will/might be involved in his care. I think you need to give yourself a little time to think things through for yourself and see if medication will be an option for him. Unless there is crisis and other people need to be informed, I would wait and see how things progress. No two people deteriorate at the same rate so now not is the time to make hasty decisions.

OH is still playing bridge and I think that a lot of his friends from the club have no idea that he has AD. Most of the members are older and many of them have their little odd behaviours so he doesn't stand out as being any different. He was diagnosed a year and a half ago and I know he may not be able to play too much longer but it has been very good for him.

Wait and see how it all goes.

Good luck!

 

[1mindy]

We kept it quiet when oh was diagnoses. Then we were at a gathering of good friends and I told one of them,maybe I just needed to tell someone,it went viral in our circle which culminated in my oh best friend phoning oh to tell him. Oh was so cross with me I had no right to tell anyone he was right and I regret doing it . So I would discuss with him to make that decision,he may not want it announcing to the world.

 

[1mindy]

Sorry just to add ,yes friends do disappear as things get worse But a few do hang around and really step up. They are worth their weight.

 

[Rageddy Anne]

We introduced it into conversations in as casual a way as possible, and my husband would usually make a joke about it. So there was no covering up to worry about.
He coped pretty well in the early stages, so it didn't feel like a big drama.

 

[Izzy]

Initially I would tell those who need to know - family and those who will/might be involved in his care. I think you need to give yourself a little time to think things through for yourself and see if medication will be an option for him. Unless there is crisis and other people need to be informed, I would wait and see how things progress. No two people deteriorate at the same rate so now not is the time to make hasty decisions.

OH is still playing bridge and I think that a lot of his friends from the club have no idea that he has AD. Most of the members are older and many of them have their little odd behaviours so he doesn't stand out as being any different. He was diagnosed a year and a half ago and I know he may not be able to play too much longer but it has been very good for him.

Wait and see how it all goes.

Good luck!

My feeling is to go with the kind of approach suggested by Lawson58. To begin with we told nobody. I think we needed time to get used to the diagnosis ourselves. I then told close family as they were the ones who were mist likely to see the changes. Gradually I told close friends. Many years down the line I now tell everyone. Bill's dementia us now quite advanced and I find it easier to mention it if, for example, I book a table at a restaurant or book a hotel room etc. Everyone is different and it will depend on how your husband feels. My husband was ok with the approach we took in the early days.

 

[Grannie G]

Go by your instinct Annie Laura unless you have friends and family insensitive enough to want to discuss the illness with your husband.

I told everyone who needed to know which eventually included the bank staff and local shop keepers. I also had to tell the local stationmaster because my husband kept buying train tickets to `go home`.

 

[Sammyjo1]

I think it very much depends on the people involved, both yourself and OH and those around you.

In our case we were very open about it from the beginning and I've found it's helped me a lot that people know. But I don't think this would have been possible if OH had not been so willing to talk about it and be accepting of his condition. I would never have gone behind his back to tell everyone.

If you choose not to tell people, and that's a perfectably understandable approach, then you might like to have one confidante that you can tell so that you feel you have someone to offload to if you are going through a rough patch.

Good luck with your dementia journey. This is a fantastic place to be as you get going.

 

[rhubarbtree]

Hi Annie,

I was in much the same position as you just a year ago. Told our sons and other close family members straight away. Talked about memory problems with friends for a while but now say Alzheimer's. People knowing hasn't really changed anyone's behaviour to my OH and sometimes I get a little sympathy, which is kind. I feel relieved it is out in the open and can ask for support/understanding when needed. i.e. Christmas Day with extended family will be tiring for OH. I know he will fare better if he has a sleep and will take a blanket along and ask if he can bed down in a quiet room somewhere after lunch.

I find the question of losing friends interesting and it comes up often on here. For me, it is more a case of my cutting myself off. I have already made my excuses for some Christmas outings we used to go to. OH is quite amiable but he is so quiet now we either have embarrassed silences or, worse, I talk too much.

Also the question of everyone knowing isn't as bad as people forgetting he has problems. He dresses well (with advice) and is good socially (still going to golf and bridge) and consequently people forget and give him information and messages which I know nothing about until whatever 'it' is happens. But as they have all been informed I don't feel any need to apologise any more or paper over the cracks.

Hope some of this helps you to decide your plan of action. Certainly think adult children should be told asap. Other people when you both feel ready but from my experience it is better when it is out in the open.

This year I am sending Alzheimer's Christmas cards, as a gentle reminder to friends and family and hopefully to encourage fund raising. Couldn't have done that this time last year.

 

[Wolfangel45]

Hi Annie,

I'm very much an open person normally so when I was given a diagnosis of dementia I just told people as a matter of fact. I'm still having tests as my specialist believes I have two kinds. But I prefer people to know so when I stumble or my speech gets slurred or i gets words jumbled up, there is understanding. There know. I don't do the sympathy card because it is what it is. Some of my friends have fallen by the wayside but at least I still have good friends. And I just think they are not very good friends anyway!! I'm only 45, but try to be as positive as possible except when it gets too much. My family would have preferred me to brush it under the carpet and pretend its not happening, which isn't very healthy either.

What does your husband think? I would ask him.

Hope this helps

Tracey

My husband is in the midst of tests now but it's clear that some kind of dementia will be diagnosed. It's just a matter of exactly what kind. I've known for some time now that this was going to happen; I've been keeping notes for a few years now. They started as an effort to be objective about his sometimes worrying behaviour - was this just 'ordinary' cognitive decline and was I being melodramatic about it? It's now clear that I wasn't. His short-term memory is often devastatingly bad now. Other kinds of memory are better and his verbal (and mathematical) skills remain high.
Thing is that apart from my sister (who doesn't live nearby) no-one else knows that this diagnosis is imminent. It has been possible to paper over his bad memory failures (though I do sometimes wonder whether some people do have inkling).
I would welcome advice from everyone about how public to go on this when the diagnosis comes through? My instinct is to quietly tell people immediately - his sons, family, friends, almost anyone we have to deal with really, in order to be honest and to avoid problems or distress when people assume he is the person they knew or someone who is 'normal' and will remember things (occasionally he will but much more often he won't). And to maximise support for us both. (Thankfully I organised LPA some time ago and I can formally take over whenever I must. Informally I handle everything now anyway.)
But part of me wonders if being open will mean that people shun him and us more, because they are afraid or embarrassed or they just want to distance themselves from unpleasant knowledge. Once the 'cat is out of the bag' we can't get it back in. What's your experience on this?

 

[jaymor]

We took the decision to tell all those who needed to know.

It was important to tell the people my husband worked with so they understood that any behaviour out of character was the disease and they were all very understanding and were there to support my husband. They had noticed the change and were worried and at times lost as to why his behaviour was not his normal behaviour. This enabled him to carry on running his business for 4 years after diagnosis. All the family supported us too and laughed along with my husband when he did or said something wrong. No one looked at him and wondered what was going on.

We only started to loose friends and acquaintances once we could no longer join them because going out was impossible as my husband could not manage in a large group. We really only lost those on the edge of our circle most stayed with us albeit some only on the end of the telephone.

I don't regret coming out right from the beginning, it was a help to us both though I know for some it would not be. It really is a very personal decision to make.

 

[tigerlady]

In my case, 2 of my husbands friends came to me in 2007, very nervously, saying that on their weekly lunch meetings they noticed he kept repeating things and not remembering what others had said and they thought he should see a doctor. Of course I already knew, but I was covering up for him as much as I could when I was with him, and he was in denial then as he is now and it wasnt till 2013 that he had a memory test and a brain scan in 2014 confirmed alzheimers and vascular dementia.

Gradually others noticed and gradually I told them that he did have problems so that they did not question or ridicule him when he kept repeating himself or say inappropriate things.

He is in a care home now, but when I take him out and meet old friends they always greet him with pleasure and never make him feel uncomfortable, although hardly any want to visit him in the care home.

Its best to be honest and tell people discreetly as and when you think they need to know, to avoid embarrassment in public and so that they dont mention it to your OH if he is in denial.

 

[eve67]

telling people

around the time hubby was first diagnosed with dementia some people we knew were starting to take the micky out of him which was quite upsetting. I then decided to tell everybody we knew, even friends we may only see once or twice a year, I found it was best to get on the phone and warm them in advance . Since then everybody has either been sympathetic or kept away and at least I know I've some shoulders to go and cry on now.

 

[Debs42]

My husband hasn't been formally diagnosed yet, but people aren't stupid - friends can see what's happening, just through the way he behaves ( and forgets appointments etc!). I have found just a short explanation really helps because friends can then develop their own tactics for dealing with him and will be much more tolerant of his foibles. For example, I have an agreement with his tennis playing friends, that they let me know when they have arranged a game, so I can make sure that he turns up at the right time. I think this makes it easier for him too, because there's less embarrassment. Real friends will do everything they can to support.
Hope that helps.

 

[BillBRNC]

I don't plan to hide it. My wife doesn't want to tell folks until we have competed a second opinion process that confirms the first opinion. But we all know the first opinion was right. I see no problem in going along with my wife, as she will be the one who is taking care of me when care is needed. As for who to tell, around this little town, if you tell one person the whole town will know within a couple of hours. Just the way it is around here.

 

[Countryboy]

Well once the person has the Diagnoses , they should tell their employers they must by Law inform DVLA { if not then they are committing a criminal act } they must inform travel insurers or in the event of a claim there insurers will say you gave false information plus the diagnoses is now on your medical records , plus we hear all the time about Dementia Friendly Communities or Dementia Awareness , well what’s the point of all that if peoples don’t tell they have it.
if you don't tel don't complain

 

[aprilbday]

When I told my sister that I was diagnosed with dementia she said,
" But....you're a teacher!"

I guess I am not suppose to be functional and immediately go into a vegetative state. Anyway , now she is very annoying as she tries to complete my sentences for me if there is any hesitation or momentary pause.

Wish I'd never told her.

 

[jhoward]

When I told my sister that I was diagnosed with dementia she said,
" But....you're a teacher!"
I guess I am not suppose to be functional and immediately go into a vegetative state. Anyway , now she is very annoying as she tries to complete my sentences for me if there is any hesitation or momentary pause.
Wish I'd never told her.

That must be SO irritating.
I've just been diagnosed and have told a few friends: really to stop them wondering. They've mostly said they'd already noticed something. I think it will put off a few people, but I'm happy to let them go.
It is quite a surprise to me to see how patchy the changes are. As you say, one doesn't go straight into a vegetative state, but there are some noticeable changes.

A friend in my village told me of another neighbour who's just started down this melancholy route.; she went on to suggest that "What you need is a village group -there must be several people in the same boat." She plans to gently introduce us, so that at least we can exchange experiences or moans and groans.

Having only just had the diagnosis, I'm still shocked and resentful, but beginning to settle down and accept it. Tough though, isn't it?

In short, I think on balance is best to tell key people; not necessarily everyone, though. The word will soon spread, I'm assuming in my case.