Explaining son's death to someone with dementia

sadn

Registered User
Oct 20, 2011
3
Hi all,
my 1st time posting here, I'm sure that this topic has been covered before but it's a traumatic day and I haven't got the time or energy to research.
My Aunt has dementia, 89 yrs, her son died at 4 a.m this morning, she lives with my cousin and her husband, my cousin is her main carer. My cousin is an absolute wonderful carer and daughter to my aunt. Today has been very hard, as every time my cousin explains the death of her son to my aunt, she forgets and 1/2 hour later she's asking when are they going to the hospital to see her son, then my cousin has to explain all over again, and the pain of this news is just as awful for my aunt as the 1st time she was told. My cousin spoke to their GP today, who said well I guess you will just have to keep telling her. My cousin is rightly exhausted but is the most patient and caring person I have ever met, therefore I'm posting on her behalf, to get some advice and guidance (as none has been given by my aunts GP!) as I know she will need help. My cousin, like me is not sure whether she is doing the right thing for her mother continually telling her that her son is dead. She knew her son was in hospital (was taken in 3 weeks ago) but didn't really understand how serious it was, will she eventually come to understand that he has died. My cousin does not get any help from anyone, as she has always been determined for her mother to stay at home and be cared for, but we (the family) are in undiscovered waters today and just don't know what to do for the best, for my aunt.

Advice of similar experiences or an explanation of what is medically best for my aunt would be appreciated.

I don't know if dementia is measured in anyway, to explain where my aunt is, she forgets who I am after 10 mins, she has breast cancer and doesn't know it every time she see's the breast consultant she thinks she's getting her cataracts sorted.

Advice for my cousin would be great. Thanking you in anticipation.
 
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Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,243
65
Toronto, Canada
Hello Sadn and welcome to Talking Point (TP).

You will most likely get a variety of opinions but in my case, we did not tell my mother when her sister, brother and husband died, even though my aunt died in 2003, uncle in 2006 and stepdad in 2007. At that point, she would not have remembered and we would have repeated the news over and over.

She was still asking how my grandmother (who died in 1970) was in 2007. I used to tell her that grandmother was fine, the same as always. When she would say she wanted to visit her, I would agree and say "Let's go tomorrow or the day after as I have things to do first". Originally, I told my mother a couple of times that my grandmother was dead but this brought on floods of tears. I felt, and still feel, very strongly that it was best to avoid telling her again, as it was causing her anguish and pain.

So my opinion is to avoid the subject and lie if you have to. Your cousin can simply say "We'll go tomorrow". I'm not sure how you should handle the funeral. It does rather depend on how your aunt responds.

Let us know what happens.
 

sadn

Registered User
Oct 20, 2011
3
Thanks for that, we hadn't even got as far as thinking what to do next week when it's the funeral, it would break everyone's heart for my aunt to be there and not really know why. Your approach seems the most humanitarian, but she is so ill and frail, that if she did know, the worst may happen.

Thanks again
 

Onlyme

Registered User
Apr 5, 2010
4,995
UK
How about a half truth that 'he is in the best place so we haven't got to worry about him. We will see him soon enough'. I would be busy doing something while she is told that which enables to you to bring what you are doing into the conversation. 'Now I have tided that up how about a cup of tea/shall I clean that for you/read to you etc.

Mum still asks after her parents and can't understand why they don't come. I just tell her that she will see them soon and we will sort out arrangements tomorrow. I don't see the point in telling her over and over again as it would be so cruel.
 

reno

Registered User
Feb 28, 2011
103
Hi all,
My cousin spoke to their GP today, who said well I guess you will just have to keep telling her.
I have no experience of this, but have to say that I think this GP is misguided. As the news won't ever sink in, what is the point of the repeated trauma of this? A kind white lie seems to me to be the answer, as in so many - more trivial - situations.
 

scatterbrain

Registered User
Jan 10, 2008
25
Berkshire
handling bad news - again and again

I totally agree with Reno - there is less than no point in repeatedly putting her through the trauma of hearing of her son's death. If she knows that he was in hospital, your cousin could tell her that he is still there, but too ill for visitors, or just that she can visit later. They are going to have to keep on telling her the same thing, though, so be prepared! It gets very frustrating but it is much easier if you are not upsetting her every time you tell her.

I read somewhere that if someone is 'stuck' in the past, it is cruel and unnecessary to try to drag them into the present - as well as being doomed to fail. It is much better to play along and let them enjoy what they remember even if it all happened a long time ago in our reality! It is not a matter of lying to them: lying implies an intention to deceive and that is not what is happening. It is more a case of treating them with respect and gentleness, and affording them some dignity in spite of their condition.

It sounds as though your cousin is doing a brilliant job - but carers need support and encouragement too and it's great that you are doing that for your cousin. I hope everything goes smoothly with the funeral and that your cousin can get some good medical advice for your Aunt.
 

Christinec

Registered User
Aug 8, 2007
214
Mum also asks about her Mum who died over 40 years ago and I reassure her that she is fine as telling her the truth upsets her.

Also my uncle (her brother) died about 3 years ago and Mum was taken to the funeral although I did not think this was a good idea. She seemed to have little idea of what was going on and was vaguely distressed and anxious throughout. She continued to ask how her brother was although she had been to the funeral.

In my opinion it is better to tell lies and use distraction as no one benefits in this situation from the truth.

Sounds as though the GP has little idea of how to deal with the non medical side of alzheimers and I wonder whether your cousin has any support from a Carers Project , Alzheimers Society or Social Work.

It sounds as though you are a very caring and close family and I hope this helps you all to cope with this sad situation.
 

Simon1964

Registered User
Sep 14, 2011
20
My father in law's son died suddenly and unexpectedly in April. We told him but like your mother he instantly forgot. We kept telling him for a few days as we felt it was right to give him the chance to grieve for his son (and we were grieving with him) but agree that it is not something you can keep going as it serves no purpose. Sometimes out of the blue he would get a sense something was worng but he could be easily distracted. It was hard for his wife as he would ask her questions about their son without knowing he had passed away.

His wife died earlier this month and it is impossible to hide it from him. He constantly asks where she is as she spent 24 hours a day with him before. It causes him a lot of distress but so would any other explanation of why she wasn't with him. If there is a way to avoid the distress you should take it, but if she has been told a few times and forgotton, she has been told. I think you can say you have done the right thing by her and she has had the chance to grieve - even if it was for a short time and in her own way due to this evil condition.
 
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vdg

Registered User
Aug 6, 2009
264
Hampshire
I didn't tell my Mum when her brother died recently, she never mentions him so it was easier that way. When she says she wants her Mum I just say she 's too far away to visit[true in a way!] and she accepts that. I did once tell her her Mum had been dead ages but the result was so upsetting for her I decided never to do it again.
Perhaps something similar would help in your case?
Viv
 

sadn

Registered User
Oct 20, 2011
3
Thank you

Many thanks to everyone for the replies, it has been appreciated, my cousin has taken the decision to keep explaining to my aunt what has happened. We are at the stage where she knows something awful has happened but can't remember what.

The funeral took place yesterday, my aunt appeared to understand, she was so upset but by the evening she was asking what had happened today, it's like she senses it but just can't remember it.

My cousin and her husband have decided they need to stick with it in the hope that she will understand but, they will take it day by day.

Once again many thanks for all your support, we can only see how it goes. Take care all.
 

Pollyanna

Registered User
Jul 8, 2008
814
I'm a little late replying to this thread.

My Nan lost her son (my uncle) and we (eventually) decided not to tell her. We just let him fade away. I can't say whether it was the right decsion, but I do know that we felt we were saving her from pain and I am glad we could do that do for her and I don't regret it.

But, it wasn't easy. I understand now, 3 years on, what a very distressing time it was for the rest of us. Especially the early days....whether we should tell her or not....going to his funeral while she sat at home watching tv...always wondering if it would be this visit when she asked about him...

It sounds stupid, but now she's gone, I really wish I could ask her if we got it right? Letting him fade way seemed the kindest thing to do for her and the right thing for my uncle. I'm not so sure it was for the rest of us left behind!

Your cousin will probably stop telling your aunt, I can only imagine how traumatic it is for her time and time again especially when she must be grieving too.
 

handyjack

Registered User
Oct 6, 2011
151
Personally, I think your cousin, shouldn't keep telling the truth.(certainly she shouldn't be so blunt with it, hard as it may be) Time for a little white lie. Reminding them, or repeatedly telling them , someone close has died serves no purpose whatsoever. Perhaps your cousin believes in the saying "cruel to be kind." in the vain hope that it will eventually sink in.
Tell your cousin, people with dementia, still have feelings and emotions (sadly some people don't realise this). To repeatedly upset your aunt, certainly isn't good for her. Take your cousin to one side and ask her to perhaps be a bit more economical with the truth. Your cousin is being very unkind, doing this and perhaps it's time for her to ignore this unfeeling doctor's advice.
 
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benny

Registered User
Dec 7, 2009
290
Central Coast NSW
I whole heartedly agree with everythimg scatterbrain has said it sums it all up compassionately and with respect.Also I think like all the others as well little white lies become your biggest outlet with this disease. Take care and all the best. Cheers robyn
 

carochap

Registered User
Feb 18, 2011
6
tunbridge wells
This problem is obviously not uncommon. My sister died and I felt it would be the wrong thing to do to tell Mum, so whenever the subject comes up we tell her Margarets still in South Africa where she lived, and will be coming home soon. She seems satisfied with that and my brother in law just puts on birthday cards etc from Margaret and Peter and Mum is happy with that.