To tell or not to tell

[Vic10]

I am finding it difficult to know whether it is better to tell people, friends, family or workmen who may visit our home that my OH has Alzheimer's.
I feel that if I tell them they may find it difficult to converse normally with him and he very quickly feels left out f he is not actively involved in conversation.
Yesterday we had visitors that we had not seen for a couple of years, everything was ok dispite some repetition until I went to make tea, I returned to find my OH telling a bizarre tale that I couldn't collaborate, I managed a fairly quick change of subject but wonder if I had warned them in advance I could have avoided some confusion and embarrassment

 

[Beate]

I usually find it easier to make a quick remark to people. You'd be surprised how understanding most people will be, and often they say to me that they've got someone in their family just like that too. When for example we sat on a train in a four-seater with a table and John started eating the Haribo Starmix of the young Italian woman next to him, I was initially embarrassed, but she just smiled sweetly and explained that her nonna was the same and she did identify the signs, and not to worry about a thing.

 

[vannesser]

Hello

I no whot you mean abought wether to tell or not my oh as vascular dementia.most of family no,But not Nabbers as I no that one of them would treat him like a child and that's not needed,she some times try talking to me like I don't no whot I doingf so not telling her unless it gets to bad ,,xsample I am 58 had 3children .all grown up.grandaughter lives with me age 7when she was 5 had a tempatcher next door said I needed cal ppl and told me why as if I jab never got it .

 

[jaymor]

We chose to tell friends and colleagues, made life so much easier as they understood once the unusual behaviour started. My husband carried on running his business for Four years because he had the understanding and support of those he worked with.

 

[Morganlefay]

My OH is completely in denial and from 4 years ago when he was diagnosed he and I have not talked about his Alzheimers at all. he has got worse very slowly, but is now starting to have trouble finishing sentences etc. I took the view that it is his 'secret' so if he doesn't want to talk about it or acknowledge it then that was up to him, but lately I have told one or two of our oldest friends, who have all been completely understanding, and , say, the plumber who would otherwise have wondered why my OH wasn't doing the small jobs we had asked him to come and do One of the things which I find exhausting is endlessly having to make decisions about things such as this. But we are only at the start of a long road which can only get bumpier. Good luck !

 

[Early Girlie]

When Hubby was diagnosed 2 years ago with EOAD, he was adamant that no-one must know. However, at the time, I immediately asked him to let me confide in our immediate families (his father had it, so I needed his mum's support). He agreed to this, and I also told 2 of my best friends in confidence.
After a year, when his memory loss was becoming noticeable, I asked him to consider confiding in the 2 couples we are closest to, his university friends. He agreed reluctantly, and again, they were wonderful.
Now at 2 years, where we have more obvious and challenging symptoms, I am making nearly all decisions about everything, because his standard response is No, unless the question is, would you like a glass of wine? And I have now started to be open with neighbours, friends and, for example, the shopkeeper and the pubs where he goes alone regularly on dog walks.
I have found everyone to be so incredibly understanding and supportive, going the extra mile so often. I'm glad I've told people, but as with everything on this awful journey, constantly question what's right, what's ok and what's in his best interests. I've also developed a thick skin when strangers who don't know his condition get impatient or roll their eyes. It used to bother me and embarrass me. Now I just ignore them and send a silent message saying, I hope it never happens to you.

EG

 

[Zana]

If you think you can trust people by all means ... We have one neighbour who found out via the day center OH went to because said neighbour is a music volunteer. Since he saw OH there he will avoid us at almost any cost..

One doctor we saw started talking to OH then where he saw the word dementia on OH case file he totally ignore OH and directed every comment to me talking over OH.. Of course we left and put in a compaint and saw a dofferent and very nice doc but the fact is there are people who will just treat you like a freak or an idiot , mind you once you know who they are you can avoid wasting time on them so its not so bad I suppose.

 

[northumbrian_k]

Although it is hard not to, no-one should feel embarrassed because someone they care for has dementia. It is a disease and nobody's fault. My wife doesn't acknowledge her dementia but I have found it helpful to tell some of my friends (not hers) because it has helped me to deal with it better. Some of my friends have professional knowledge of dementia, others are just caring people who understand why I am no longer the always on-time, never let you down person that I was. Crucially, when we do see them they don't treat my wife any differently than before.

As for telling casual acquaintances or people coming to the house to do work, I wouldn't bother. If they haven't guessed by the 4th time they have been asked the same question or told the same tale then it probably doesn't matter. There are some horrible people around who treat any kind of affliction as a weakness to be exploited and it is best not to confide in people like that. In summary, don't broadcast it but be prepared to tell people when necessary and acknowledge it if they ask in a kindly way. Drop anyone who cannot deal with it in a mature and sensitive way.

 

[Philbo]

In the early stages of my wife's dementia, I told close relatives and a couple of friends but as the changes in her became more obvious, plus she had become less aware of the condition herself, I told more people we came into contact with regularly.

I have found almost all folk are very king and understanding but it does highlight who your true friends are? Some of her oldest friends and ex work colleagues seem to have disappeared off this earth? Maybe they find it hard to deal with seeing her getting worse and worse - something that one of her younger sisters seems to suffering from too?

Best wishes.
Phil