What/who to tell about DH's Dementia.

Oh I do understand your dilemma. Several years ago my OH was diagnosed with Parkinsons Disease. We already knew he had it many years before that, but delayed a formal diagnosis until my OH (a retired doctor) decided that the point had come when there might be some benefit in treating it.

So....who to tell and how? OH wanted to tell no-one, but people must have noticed things weren't right and we could not just ignore it. And I felt very uncomfortable with people we knew well just pretending all was fine. But he had the right to decide how he wanted to deal with it. As a well-k own and respected local professional he found it very hard to acknowledge weakness.

I encouraged him to be honest with people about the fact that he has a long term degenerative illness and strongly opposed him keeping it from our children and close family - it felt so dishonest and unfair on them - and on me in a way, as I felt that we were living a lie with our dear children and I could not cope with that.

We did tell them and they were sad but of course hugely supportive - they treat him with great respect and value hos talents; while at the same time making allowances for his problems.

I encouraged him to gradually tell friends and everyone has been so good - both to him and to me.

It is so much better with it all out in the open - no-one makes a big deal of it, but everyone makes allowances when he forgets things or falls asleep in the middle of a conversation or is unable to write. And they quietly get on with help with heavier things that neither of us can manage.

Living a lie is agony - so very stressful. So I would encourage you to let people know that he has a problem with his memory. The difficulty for you of course is how or whether to engage your OH in the decision to do this. I would encourage you to be open about it, both in his presence and not, as that will take a huge stress off your shoulders. Only you can decide whether he might be averse to your doing this and how you might approach it with him and with family and friends.

I do understand that tricky balance between doing what feels to be right whilst at the same time maintaining his self-respect and trying to do what he might wish.

You have a difficult road ahead of you and I would encourage you to be as open as you can so that all the support and love of your family and friends can help to carry you through. And please do grab any help you are offered with both hands.

Good posts gilly and bags.

I think you need to be open and honest as soon as you know. It will be hard for you, and your dh, the first few times but will become a fact of life the more you tell people. The more people you tell, the more people you will have 'on side' which will possibly be helpful later.

Dementia of any type is not something to be ashamed of and you will probably find lots of kindness.

As others have said, look after yourself too and contact Alzeimers to see what they can offer. And, as you know, you will have lots of support here.

Well said, gillybob. I think we have been afraid to talk about illnesses that change a person's behaviour in the same way as we've been afraid to speak about mental illness. Time to "come out" on these things and be down to earth and above board. They are illnesses. That's all. We don't understand them much and treatment is in its infancy but thay are simply illnesses.

Think of them as the smallpox and plague of our times. No-one's at fault or mad because they are ill. They are just ill.

All the best, g23 x

Meant to add that my mum and grandma used to "beat around the bush " about my grandads dementia and try ( unsuccessfully) to cover it up as though it was a temporary setback and he would get better, which looking back only made things worse, but perhaps was a coping strategy for them .

I am very sorry to learn if you DH's illness Granny23 . I agree with many of the previous posts that you can't go on making excuses for odd or downright rude behaviour , it isn't fair to you or your DH . Maybe once you have a definite diagnosis it would be wise to tell the people that you will come across the most and then it's done . No continuous excuses and explanations necessary. I am not sure how much someone with vascular dementia can understand about their own health? Could the consultant and specialists help you explain? Then when you come across a situation like, having work done you can just say it out loud, not behind his back so to speak. Whether he understands probably doesn't matter really it just lifts the pressure from you . For example you could say "John has some health problems, haven't you John? .... He had been diagnosed with vascular dementia"
Then you haven't whispered behind his back and it is out there. His odd behaviour , clearly explained and hopefully understood.

I remember when my late grandad was diagnosed he went through times of being so confused and paranoid about silly things but then would have short times of almost total normality where he would know that his behaviour was irrational.

I'm sorry if what I have said is s load of old rubbish . I just don't know what to say to be honest. Except I wish you and DH well. And make sure you take every offer of help you get !!!!!

Thinking of you x

Or just say: "He's ill".

is

I would simply tell people that you think it is dementia and that you are sorry but it's the illness that's the problem. If you're wrong, he'll get better perhaps, but if you're right, no-one os harmed.

You'd say if you thought he was grumpy because of a stinking cold, or flu, or measles. Dementia is just another illness. Talk about it in the same way.

I am so sorry Granny23 it's such a difficult thing to come to terms with.
As others have said I think you need to mention that your husband is experiencing some memory problems in that way you will get support from friends & neighbours. If you let close friends know it's ok to talk about it then others will also get to know. You both need help and support now.

I m sorry to hear this Granny23 I would say honesty every time, it s far better to know someone has dementia than to think that they are rude and nasty. Both my Mum and Nan had this horrible disease ....now I have a friend who I meet up monthly, with a group of school friends, for lunch I had noticed and realised about a year ago, others were asking amongst themselves if she was ok ... then her husband spoke privately about it to me which is so much better as I can keep an eye on her now, make sure she sits near me to talk to, she has a good long term memory but can ask the same question twenty times in a row about something happening at the moment, and pretend I m going her way afterwards so I can see her back to where her husband is waiting for her She is on medication which has been holding it back for the last two years but now seem to have changed as she has got a bit worse lately
It's a rocky road Granny and I truely wish you well, please remember he is not being awkward on purpose it's out of his control I dread it it's the most difficult illness to manage, do take ANY help offered for both of your sakes

Granny23 Firstly I'm so sorry to hear this, having been down that road with my DM.
I agree with ann's advice above, but would just add, you say that your DH won't admit to any 'weakness' - but that isn't the same as him not having insight into his condition.
He may well realise what is going on, and it may be easier for him as well as everyone else, if things are more out in the open.

I cannot say how sorry I am Granny23 you have said before that your H has a problem, having it spelled out is a whole new ballgame. I just tell people that my H has a problem with his memory, they soon pick up on the real issue. I am lucky?? that my H has Alzheimer's which does not seem to progress as fast as vascular dementia. It is certainly better to tell people, better for you and for them, they are far more likely to grasp and deal with facts than perhaps misunderstand or be offended. People just accept now not to invite us out, hard for me but I am happy not to be embarrassed by his behaviour and to all the people who say " but people understand" well actually they don't and don't like their social arrangements being "spoiled"
My very best wishes go to you and your family for the path you find yourself on.

Having been through this with my dear brother I suggest you mention to people that your DH has memory problems and is possibly showing the signs of dementia. I have found most people respond to this in a sympathetic way and understand the difficulties. It would be a help to you to have friends support you and not to feel that you always have to make excuses for your husbands behaviour. It is nothing to be ashamed of or embarrassed about. It is an illness like any other and could happen to any of us. The sooner people know what is going on the easier it will be for you to cope when you see other people. I am sorry that you and your DH are having to go through this.

Sorry to hear of this, Granny23 it must be difficult for both of you. Not sure what to say, I expect others will be better placed to give advice.