Gransnet forums

Ask a gran

What/who to tell about DH's Dementia.

(40 Posts)
Granny23 Thu 18-Aug-16 22:39:37

After two years of non-committal and vague comments from the Consultant and our GP it appears that we are edging towards a diagnosis of Vascular Dementia. One of the difficulties I have faced is trying to gloss over or explain away DH's puzzling, increasingly odd, (sometimes downright rude) behaviour with neighbours, old friends and acquaintances, by either ignoring it or simply saying he is tired, in a bad mood, still suffering the effects of his accident, because I felt I had no right to stick a label on him or talk about him behind his back. This week we have had some tradesmen doing bits and bobs of maintenance in the house - all old friends that DH used to work with regularly before he retired and it was obvious that they were taken aback by DH's failure to engage in conversation with them, disappearing and leaving me to explain what needed done and expressing surprise that he had not tackled the jobs himself because he looks so fit and well. Another problem is turning down invitations when DH will not go, nor can he be safely left 'home alone' so that I can go on my own.

Now that a diagnosis is imminent, I am still at a loss as to how to tackle the subject with people outwith the close family circle. DH would never admit to any 'weakness' on his part, so there is no way that he would tell anyone himself. Should I continue to dissemble or should I tell people on the QT? Would it be OK to tell a few key people and ask them to let others know? Any thoughts or advice would be most welcome.

phoenix Thu 18-Aug-16 22:46:37

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.

Crafting Thu 18-Aug-16 22:52:48

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.

annsixty Fri 19-Aug-16 01:08:10

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.

janeainsworth Fri 19-Aug-16 02:32:24

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.

BlueBelle Fri 19-Aug-16 06:28:11

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 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

Christinefrance Fri 19-Aug-16 07:19:34

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.

thatbags Fri 19-Aug-16 07:26:44

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.

thatbags Fri 19-Aug-16 07:27:03


thatbags Fri 19-Aug-16 07:27:47

Or just say: "He's ill".

gillybob Fri 19-Aug-16 07:32:29

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

gillybob Fri 19-Aug-16 07:35:57

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 .

thatbags Fri 19-Aug-16 07:40:47

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

kittylester Fri 19-Aug-16 08:04:25

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.

Luckygirl Fri 19-Aug-16 08:21:16

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. flowers

Anya Fri 19-Aug-16 08:35:13

I know what you mean about vague comments from GPs Granny23. I took my DH to his GP a few years ago because of memory problems and the two of them almost formed a 'boys club' laughing at my concerns. I watched his mother progress through vascular dementia and I could see the early sign being the one who was with him 24/7.

But I sat there and refused to budge until the GP ordered a brain scan to 'satisfy the little woman' (I could almost read that as his subtext)

He wasn't laughing when the results showed DH had had a couple of silent strokes.

I'm still trying to impress upon my grown-up children that if there's a change to routine, especially around the grandchildren and school runs that they MUST inform me and not their father. It has taken some spectacular cock-ups with grandchildren left stranded at school, or once not taken to school, before they 'believed' me.

I've just told my lovely neighbours that he's getting forgetful and grumpier as he's getting older. Time for a fuller explanation when things deteriorate.

petra Fri 19-Aug-16 08:37:21

This reminds so much of how people, years ago, reacted to a diagnosis of cancer. I'm sure many of you remember people ' mouthing' the word as if if you said it out loud it would make it worse, my mother being one of them. I would say to her: just say the word, mum, it's still the same horrible disease.
I would have told the workmen/ friends what was wrong, rather than them thinking that he was a miserable lazy so and so.

Anya Fri 19-Aug-16 08:43:16

Coming from a largely medical family petra we simply called it cancer.

baubles Fri 19-Aug-16 08:47:04

I'm sorry to hear this G23. There's no doubt in my mind that living with a secret can be much more stressful than being open and honest about an illness which affects not only the sufferer but also those around him or her. It could be very isolating for you if your DH's illness is hidden from everyone. It's a cliche I know but you do need to take care of yourself too.

Luckygirl Fri 19-Aug-16 08:55:40

I also identify with the idea that it becomes uncomfortable to have to take over things when OH gets in a pickle. We have recently moved house and I did everything - OH could not deal with all the finances, the estate agent, the solicitor, the removers, the packing etc. And now we are here it is I who explains to workmen etc. what is needed.

I feel them looking at me and labeling me a a bossy cow - but there is no other way.

We are just packing for our long-planned holiday - a week in Britain then a week in France. He has just said we do not need to take much as we are only going for a week! Just a small thing, but sometimes it is thee little things that make you feel a bit exasperated!

Luckygirl Fri 19-Aug-16 08:56:42

One other thing that it is important to remember is that there will be lots of things your OH CAN do and it is important not to lose sight of those.

Anya Fri 19-Aug-16 09:04:18

Spot on lucky it's all the little things.

Lona Fri 19-Aug-16 09:12:35

Granny23 I have no personal experience of this but I think you've had very sensible advice from bags and gillybob, and others too.
I can only send my very best wishes for you both, it is a difficult journey to embark on. Take care of yourself as well as your dh flowers

harrigran Fri 19-Aug-16 10:03:14

Sending my best wishes Granny23, I think honesty is probably best, tell friends that your DH has vascular dementia. If friends don't understand the condition they can read up on it and you are going to need support flowers

Gagagran Fri 19-Aug-16 11:13:44

My Mum had vascular dementia and it does get increasingly harder as the condition progresses. She was also very deaf and wouldn't wear her hearing aid so became more socially isolated than she need have been.

She gradually forgot who we were, her family of five children and even my Dad, to whom she had been married for 70 years. It was hard to witness the gradual disappearance of the Mum we had known and loved but there were sometimes, rarely, occasional moments of recognition and even sweetness from time to time. She died aged 93 after she just turned her face to the wall and slept herself away but we had said goodbye to our Mum years before that as the dementia took hold.

My best wishes Granny23 and I hope that your journey together through this awful condition is not too arduous for you both. If I had one piece of advice to offer it would be to accept all the help you are offered. flowers