Should she know husband passed away?

[Seaside11]

A family member received a diagnosis of dementia 2 weeks ago after a series of strokes. She still holds lucid conversations most of the time but dips in and out of past and prestent occasionally.

Her husband has been ill for a number of months and passed away 2 weeks ago. The doctor has told family it’s best that she doesn’t know or attend the funeral.

This doesn’t sit well with me, not just the lieing when she asks about him, but the lack of opportunity to grieve and the confusion it must cause.

Ive not got much experience with dementia, but the little I have had I know that people are usually engaged in the grief process, funerals and memory and are notified of loved ones passing.

I’m not immediate family so have resisted challenging the decision. I would like to hear your opinions and experiences in this area.

 

[Beate]

It really depends on how much the person can still process that information. If they forget and ask repeatedly, is it really kind to give them bad news over and over again and let them start the grieving process over and over again? The general wisdom then is to explain away someone's absence with a different reason and then distract to another topic. This would be a love lie and is totally different from a cold-hearted lie with the only purpose to deceive someone out of self-interest.

 

[stanleypj]

This is the kind of decision that can only sensibly be made by family members who know the person well. The family will have a better idea of the likely outcome than we could possibly have.

 

[Canadian Joanne]

I can't say that usually the person with dementia is engaged in the grieving process. What happened in my case - my maternal grandparents both died in 1970. The first time after her diagnosis (January 2001 over 30 years after they died) that my mother asked about my grandmother, I was shocked that my mother didn't remember as she and I were there when my grandmother died. This was the very beginning of dealing with dementia for me.

I told her grandmother was dead and she burst into a flood of tears, lamenting and asking why no one had told her. That was the only time I told her. Ever afterwards, I would tell her a love lie. If she asked how her parents were, I would say "Fine, same as always". If she asked where they were, I would name the town the cemetery was in. If she wanted to visit, I would agree and say we would go "the day after tomorrow".

If I had to deal with the same situation again, if absolutely pushed, I would tell of the death only once. Afterwards, I would distract, divert and lie. Is it wrong to lie? No, not if the truth will cause great mental pain and anguish. To keep telling the truth would be cruel and a little sadistic, in my opinion.

 

[love.dad.but..]

When mum died suddenly dad was alone with her for 24 hours unable to get help. It was difficult in the following days and weeks to know exactly how much dad remembered or understood as he asked fairly incoherent questions with odd moments of clarity popping in. In the early days we tried to answer him honestly because of that but it became a rollercoaster of being honest then telling love lies when he couldn't process our answer. The funeral pretty much went over his head so that was a huge indication. However if the immediate family have made that decision and most probably for good reason I think you should respect that and ask them what line of reply to any questions they would like you to follow so everyone is doing the same.

 

[Lorna44]

I lost my brother suddenly last week, it was a shock to us all and we are still trying to process it. After discussing it with the nursing home, we have decided not to tell my Mum or have her attend the funeral, she is too frail physically and mentally to cope & understand. We want to save her any pain. There is going to be a lot of love lies told.
I suppose it depends on the family, they know her best. I know my mum just wouldn't cope. ( she still asks after my dad and her mum, who died years ago)

 

[spookymuffin]

My Father died three years ago, Mum, 97, has dementia and every evening gets anxious about Dad and when he's coming home. If I don't tell her the truth she becomes even more agitated as she believes it's something she has done wrong. I've tried distraction but she just keeps coming back to the same topic, wanting to ring him etc. Sometimes lying doesn't seem to be the answer. I have recently made her some 'prompt' cards to look through...details of her age, where she lives (with us in her own annexe) the people who know her, Dad's death, stuff like that, early days but at the moment there seems less agitation.

 

[Hazara8]

A family member received a diagnosis of dementia 2 weeks ago after a series of strokes. She still holds lucid conversations most of the time but dips in and out of past and prestent occasionally.

Her husband has been ill for a number of months and passed away 2 weeks ago. The doctor has told family it’s best that she doesn’t know or attend the funeral.

This doesn’t sit well with me, not just the lieing when she asks about him, but the lack of opportunity to grieve and the confusion it must cause.

Ive not got much experience with dementia, but the little I have had I know that people are usually engaged in the grief process, funerals and memory and are notified of loved ones passing.

I’m not immediate family so have resisted challenging the decision. I would like to hear your opinions and experiences in this area.

The main and fundamental point lies with 'capacity' in respect of this whole question of 'truth' when speaking of bereavement and so on. You have to gauge this carefully. If it can be resolved by someone who is subject to dementia in its early stage and thus understood, this might prove to be okay and thus a 'closure' within the realms of dementia mind and memory. But it is sadly the case and a very real one, that when such things are spoken about in all truth, i.e. factual account - then those who are living with dementia can re-live such (a death or loss) just as if it had just occurred, which can be traumatic and damaging. So 'therapeutic lies', whilst seemingly deceitful, are in fact both kind and constructive when dealing with the world of dementia. It is much the same as the application of 'distraction' when a family member leaves a Care Home. "I have to do some shopping and will be back soon" Rather than "I am going home now" - the former allows for a continuity of belief without anxiety or fear, whilst the latter can evoke both on the spot. This is never easy. The central thing is in understanding that when memory goes, especially in terms of the loss of a loved one, that 'fact' might be lost entirely and 'mother' or 'father' remain living as before and 'exist'. That 'reality' in dementia mind is as real as our own actual reality, feelings and all. You must gauge the situation in order to adopt the right approach and the compassionate approach. Dementia is always a challenge and very much so for those who are living with it. As Carers, we strive to alleviate its total lack of heart, by our humanity, compassion, awareness and above all, our love.

 

[mumsgone]

when my mums husband died and my mum had dementia my sister and i sat down and told her that he had gone she was very upset understandably but this didn't last too long. We then had to fight with nursing home not to keep telling her he was dead when she asked where he was as it just upset her each time as to her it was the first time she had heard it. we didn't decide about the funeral until the actual day and as she was having a bad day anyway decided not to make it worse for her. Play it by ear as they say is the only thing i can suggest

 

[GinnyJan]

My Father died three years ago, Mum, 97, has dementia and every evening gets anxious about Dad and when he's coming home. If I don't tell her the truth she becomes even more agitated as she believes it's something she has done wrong. I've tried distraction but she just keeps coming back to the same topic, wanting to ring him etc. Sometimes lying doesn't seem to be the answer. I have recently made her some 'prompt' cards to look through...details of her age, where she lives (with us in her own annexe) the people who know her, Dad's death, stuff like that, early days but at the moment there seems less agitation.

This is something have battled with for ages but it happens several times every day now that Mum lives with us. My Dad (her husband), my Grandma (her Mum) and my aunt (her sister) all died within 6 months of each other, eleven years ago. Mum talks about getting Dad's tea ready or his work uniform washed and ironed on a daily basis and using 'love lies' doesn't work with her.

Like you, I've tried distraction and other techniques that are recommended, but she insists that she has to go home to look after him and I find myself having to remind her that he's no longer with us. It upsets her every time and it's great to find someone who is dealing with the problem in a constructive way.

I shall steal your idea of prompt cards, if you don't mind, thank you

 

[spookymuffin]

This is something have battled with for ages but it happens several times every day now that Mum lives with us. My Dad (her husband), my Grandma (her Mum) and my aunt (her sister) all died within 6 months of each other, eleven years ago. Mum talks about getting Dad's tea ready or his work uniform washed and ironed on a daily basis and using 'love lies' doesn't work with her.

Like you, I've tried distraction and other techniques that are recommended, but she insists that she has to go home to look after him and I find myself having to remind her that he's no longer with us. It upsets her every time and it's great to find someone who is dealing with the problem in a constructive way.

I shall steal your idea of prompt cards, if you don't mind, thank you

 

[spookymuffin]

Good luck! Postcard sized and I laminated them. I know she looks through them as a different one is on top every day