Breaking the news about a death

[IthinkIsawahairbrushbackthere]

My DU (mum's widowed BiL) died suddenly at the weekend. After my DF died he was a great help to DM, filing papers, organising bills etc - things I would have done for her but he liked to keep busy. He visited her every week before the pandemic and after she went into the home he visited her every single week.

DM's dementia is such that she has very little language. When she saw him she seemed to know that it was him. When my cousin and I visit she always asks "How's Dad?" and we have no idea if she is talking about DU, DF, DGF or even DH so we just say he's fine and he's very busy.

My cousins feel that she needs to be told the DU has died and I can see why and am happy to do what is best for them in the middle of their grief but I am concerned about DM will react. I spoke to the home this morning and one of her favourite carers will be with us when we visit (a friend is coming with me - I want to break the news before cousin visits her) and this carer will be on duty for the next few days and will keep a special eye on her as will the rest of the team.

I am wondering if anyone else has had experience of this and can give me some support/a handhold as I am dreading it.

I don't I'm afraid, but I'm really sorry for your loss and for what you're going through. And you are more than welcome to a handhold. Sorry to ask obvious questions but do you think your mother will be able to understand the news if imparted to her in clear, simple language? Will she retain the information when given, or are you unsure? And do you know what kind of reaction to expect or are you in the dark/worried that she is going to be very distressed?

I really think the best you can do is sit and hold her hand and say in very plain terms that you have some very sad news, that X has died. Then hold her hand if she finds that comforting and go with whatever she wants to do next, whether that's crying or being completely distracted/unbothered or something in between... I think if you do that you have honestly done your best both by your mother and cousin.

I don't think I'd hammer the point home myself even if she doesn't really seem to have understood or remembered or continues to ask for X or 'your Dad'. Personally I think cases of severe dementia are one of the times it's ok to tell white lies so I have been ok in the past with reassuring distressed elderlies that their loved ones are fine and well, looking forward to seeing them, busy at work etc even when said loved ones have been dead for many many years. It can be very distressing for all concerned but seemed kinder than repeatedly reminding them of their bereavement over and over...

Sorry for your loss.
DM was under section in a MHU of hospital with dementia. DF had unexpected accident and died in same hospital after four nights in coma. DM was wheeled many times into see him but we didn’t know how much she understood.
It was decided lead nurse n MHU would tell her. He sat her down with tea and cake for a chat and told her. DM had v little speech at this point but said, ‘I know’ and changed subject by asking for more tea. it was decided the conversation did not need revisiting. Whenever DM asked , ‘where’s DF?’ she was told, watching football…

How bad is her dementia? Will she gain anything from being told, or is it the people around her who want it to happen?

I agree with the PP who told them once and then used white lies from then on. We did similar with my grandad. He just couldn't remember his wife died and re telling him was worse than saying she was OK and busy elsewhere.

There is no benefit to tell her. It will only cause confusion and upset, which will then probably be forgotten, and when reminded cause confusion and upset again. When my grandmother was near the end with moderate dementia, my uncle died. We were advised to not tell her because it would cause unnecessary distress. We agreed and spoke to her about him as though he were still with us. That brought her joy, and that's what was important.

I agree with other posters, at this stage of her life I would have thought the only way to treat her is to cause her as little stress and sadness as possible. Inform her of news that will be to her benefit. I don't think she needs to know unless she has a sudden epiphany and wants to know where he is and why he hasn't visited- that would be the time to gently break the news.
I'm so sorry for your family's loss.

I don't think she needs to know unless she has a sudden epiphany and wants to know where he is and why he hasn't visited- that would be the time to gently break the news.

Even then I wouldn't break the news because those moments of clarity are fleeting. My grandmother would have them and say, "William hasn't called me for days!", to which we would reply that he did call last night, remember? And she would readily "remember", too. Ten minutes later she would say how lovely that it was he came by for lunch that day.

My grandfather died years before my grandmother declined, and she would say things about him when her dementia started, like where is Walter, he should be home by now. At that point in time we would remind her that he had died and she would be absolutely devastated, like it just happened. We stopped reminding her very quickly because it caused her so much distress. It was awful.

I'm also of the view that telling your Mum just once and then white lies in the future is a possible option, but would also consider not telling her at all. What is there to gain really. It's such an upsetting scenario isn't it, you just want to protect your Mum and avoid causing her distress.

Don't tell her. You wouldn't be doing her a kindness - and it's not your cousin's call either. You should tell her it's not in your mom's best interests to be told this.

The news could make your DM very distressed, or she likely will not retain that he's died, and it will be of no help in either case.

My DGM has Parkinson's and dementia. In her world her mother, grandparents, husband (my DGD) and her later DP (all no longer with us) are alive and she talks about visiting them, cooking for them etc very often. To challenge her view on this would cause distress, so we just go with it and talk about them as if they're still here like she believes they are.

Another vote for not telling her. I have experienced many family members with dementia unfortunately and feel this is not in your poor mother’s best interest. I was at a funeral a few years ago of a close friend who has died suddenly, his poor mum had been unwell with dementia for a long time and the decision was made not to tell her. She asked for her son a few times in her care home and the staff would smile and say ‘I’m sure he’ll be here soon’, which kept her happy. She wasn’t at the church service but her other children took her to the wake and she enjoyed chatting to everyone and having tea. It was so sad but I think it was the best thing for her, all it would have done is cause distress.
equally, I have a relative that is currently demented and in a care home. She is muddled but has a much better grasp and would understand this news when told but would likely forget it. She wouldn’t be emotional though as it’s just not her nature, even with the dementia. I firmly believe she is an exception to the rule though!

sorry you’re dealing with this difficult situation but your poor mother sounds as though peace is what she needs. And your relatives judgement is clouded by grief, please advocate for your mum.

@IthinkIsawahairbrushbackthere
Sorry hairbrush, didn't clock you were OP and it was your lovely DU.
Really sorry. You must be devastated as he was a good help to you and loyal visitor.
Whatever route you choose, remember that if you do decide to tell her, it does not need to be you who imparts the information. When Stephen the nurse said he wanted to tell her, we all took a relieved step back.
Equally, had we not told her, I don't think she would have been any the wiser. Sending hugs.

My MIL has advanced dementia and when a relative died we told her (she was noticing traditions taking place and kept asking questions) and she was really sad for the day. She now asks about the relative often and discusses seeing them regularly, after advice from the National Alzheimer’s Society (which is really helpful btw) we now go along with it, otherwise you’re just distressing them again and again.

Sorry for your loss OP.

Its a tricky one, but I suspect if your DM is as advanced as it sounds, the news might be more upsetting than comforting.

'When did he get sick?' 'Why didn't anyone tell me?' 'Why didn't you take me to see him?' 'Why didn't you take me to his funeral?' etc etc

My nan would tell us she had seen my grandfather (who had died several years earlier) for lunch, at the shops, in her sleep etc. Very early dementia days, we did remind her, but in later years it became too upsetting for all. We'd say he was fishing instead. When my own uncle, her son in law died, my aunt decided not to tell her. Best of luck with whatever decision you make. x

When an elderly relative reached a similar stage, we opted to withhold the news of a few particularly upsetting deaths. Occasionally she would vaguely inquire about the people but always moved on without even waiting for an answer. I am happy we spared her the pain the rest of us had to suffer.

I agree that I don't know that it's in her best interest to be told, but if you do I would be quite clear with your cousins that she may well forget and she really shouldn't be told again and again as that's not kind.

If they would find it too distressing at the moment to visit her while she might mention their dad as if he were still alive then it would be understandable.

I have had to inform my elderly parent with dementia of numerous deaths over the past couple of years. Old colleagues and brother and SiL. It's very distressing for both of us. After the initial telling, there is the forgetting followed by distress as they remember, but question it. Having to tell them over and over their family member had died and see their upset is awful.

If you don't think your mother will understand, I would spare her the confusion and distress.

Agree - I’ve also seen the opposite scenario, where an elderly person asks for their parent or wife and is told that they are dead, causing shock, tears and grief. It’s honestly cruel to do this over and over again to somebody who can’t retain the information.

I agree with others. Tell her once in very simple language and move onto to something else like a cup of tea. then if she mentions him again just white lies. Also be prepared for her not to be interested or actually to care much. In my experience people will dementia become very self focussed and live very much in the present and if it doesn't have any immediate impact on her she possibly won't be see it as important.

If she asks again about him, I’d just tell her very briefly and simply. Even if she’s upset, the likelihood is that she’ll very soon forget, so I certainly wouldn’t keep reminding her.

After MiL had been dead for some years, FiL (vascular dementia) suddenly started asking where she was. We were still new to dementia then, so explained as gently as poss that she’d died some time ago. But he was terribly upset and cried - only to forget and ask again twenty minutes later. So we started saying that she’d just gone to the shops, or to visit Auntie So-and-So. Which would keep him quite happy for the moment.

(On the Alzh. Soc. forum for carers of people with dementia these are known as ‘love lies’.)

Might add that I felt obliged to tell my DM (Alzh.) that her younger sister had died. TBH she didn’t seem upset at all - one of the advantages - probably the sole advantage! of mid-later stage dementia I suppose. Another time I was showing her a photo of my father, who’d been dead for some 15 years by then. They were very happily married and she was devastated when he died - but all she said, very vaguely, was, ‘Oh, yes, did he die?’ - honestly not upset at all.

Why are your cousins making this decision? She is your mum. You decide. I went through this with my gran and I think it’s cruel to tell her. You don’t need to, she won’t understand or remember. Why do it?

When my step-grandma was alive her husband (my grandad) died and she was at the funeral. Someone else close to her (a sibling) also died but in another country and her daughter told her, visited her. Just a simple one off statement. Luckily that was all she needed but she did bring up the person (older sister) a couple of times in passing, sort of knew they’d died but sort of didn’t know they’d died.

Thank you everyone - just to explain why my cousins feel she should know:

We live in a very close community - my uncle was very active in church circles in two towns and very well known. There are people in the home with visitors who knew him and know my mum and they will often pop in and say hello to her. We have no idea when any of these common connections might visit and we would hate for someone to tell her that they are sorry for her loss when she has not been told that she has lost someone.

One member of staff, a lovely compassionate creative lady, is not very tactful - we were in the living room when she was interacting with the ladies and she reminded someone that her dogs "have a new home now - don't you remember?" She wouldn't dream of saying that she knew would hurt but it didn't occur to her to lie and so my cousins feel that she should be told.

The staff in the home also feel she should be told. I think the discrepancy is between what I see of her (very little of her personality left) and my cousins view (she's still there, deep inside and needs to be treated with honesty and dignity). So I am happy to go with the majority - or I was until I read your replies.

Also she was very upset that I didn't tell her about my daughter's baby. That was 8 months ago so she might be less articulate now and less understanding so it is quite a dilemma.

It sounds as if you should tell her once. I think it does depend on the stage. I told my mum that her partner had died (they weren't able to see each other for a while before that) and she was distressed and then never mentioned him again. I never told her that her only living sister had died because by that time she wasn't really responding much. In a way I take comfort that in my mum's room, my aunt is still alive.

We saw her yesterday and told her. She repeated "Oh dear, oh dear" a couple of times. She asked if he would recover (we told her there had been an accident) and we said no. She asked if he was in bed and we said he was sleeping and he was with his wife now and had no more pain.

I've just spoken to the nurse at the home and they haven't seen any sign of distress or upset so they think she didn't really understand or if she did she has forgotten so I feel I did the right thing. Thank you all so much for your support.

We are all in agreement now that she has been told she won't be told again. If she asks after him we'll just say he is fine. If she asks if he is visiting we'll just say that he can't at the moment and leave it at that.

I know you have told her but I really wouldn't do it again. My mum has mixed dementia (Alzheimer's and vascular dementia) and asks after my best friend who died last year. The first time she asked I told her she had died and mum was devastated again. It really upset her and it upset her more that she had forgotten. The next time she asked I just said my friend was just the same. Not technically a lie.

We haven't told DAunt with mixed dementia that her DB (our DF) died last year as it would upset her and we'd have to repeat it and upset her again every time she asked. DAunt has forgotten both my DPs, her own DH and her own DPs have died. Now if she does ask after any of them we just say they've been busy with a hobby, or are at work or are on holiday but will be in to see her soon. She's content and not upset then (though I dislike lying to her). Mentally we think her mind has rolled back to the mid 1950s and so we base our conversations about family as if it were then.