Telling Mum about Dad's illness/death

[Cinnamon009]

Just wanting some advice really or confirmation that we are dealing with this correctly.

Mum was taken into a care home on Friday for respite care as Dad was taken into a hospice on end of life care. We took Mum to see him and explained to her was really poorly. We did not mention he may not be coming out but she saw for herself before the hospice admission that he was declining fast as she was still at home with him and we had medical staff coming into the house all hours of the day and night.

She doesn't really remember visiting him in the Hospice. So far we have just kept saying to Mum he is really poorly but not elaborated as she is not retaining this information and it just keeps distressing her. Sometimes when I say he is poorly she nods but then five minutes later will ask me what Dad is eating at home as he can't cook for himself.

He is likely to die in the next few hours/days. From reading around the advice is to tell her once but not keep repeating the news as it will be distressing all over again.

The care home today (possibly as a retaliation against our raising concerns about their care) have said we are not keeping her up to date and we should be telling her more. Given she isn't retaining the news that he is poorly how will she retain a longer explanation or update that he dying. I don't agree and what is more concerning is that they are supposed to be dementia specialists so I would expect more understanding of her condition.

Are we right in not repeating the news about Dad. How do we handle the news about his death - do we keep repeating it so it is freshly distressing every time or tell her once and then just leave it. She has not asked if he is going to visit her.

 

[backin]

If she is not able to keep the information then I can't see how it helps to tell her

 

[Jessbow]

He's poorly, he's not ging to recover- tell the dtaff at the home t keep her in the loop- very little more you can say about the situation.

if they want her to be reminded, let them do it....and deal with the fall out

 

[millalm]

@Cinnamon009 I'm sorry to read about your situation, it must be so overwhelming to be trying to cope with both of your parents needs at the same time. There is no 'correct way' to deal with such difficult circumstances. Although the care home is trying to be helpful, every person with dementia is unique, so one strategy does not fit all. You know your Mum better than anyone, if you strongly believe it will not help her to keep giving her this terrible news then don't do it.

When she asks about what he is eating at home just answer vaguely that you are making sure he is getting regular meals. Only give as little response as satisfies her at the moment. I was always surprised about how stoically my Mum (with mixed dementia) would accept difficult news when it had to be delivered- eg the death of her beloved brother, but actually so glad that it didn't stay with her. When she would speak of him, I would respond that he was keeping busy....you get very good at telling love lies

Wishing you strength for the coming days

 

[LewyDementiaCarer]

Every person is different, and you know your mum better than anyone. Also there are no 'wrong or right' answers with this kind of thing.

That said, one thing that I've noticed, is often deep down below the mental confusion they kind of know the truth, so I always try not to lie, but instead guide them into a conversation.

For example, if she asks "What is he eating tonight?" say something like "I'm not sure what he had tonight... did he have a favorite meal he liked to eat?"

Or if she says "How is he doing today" say something like "I think he is quite tired, but he's getting a good relaxing rest... What was he's favorite way of relaxing?"

-Often these kind of somewhat vague yet reassuring responses, followed by simple questions can lead them into fond memories and they will happily chat about loved ones for a while, where you can listen with empathy & love and then they will naturally move on to another topic. I think it's a way they deal with the confusion of emotions. And that way you don't feel pressured into distressing or lying to them either.

 

[Ellie2018]

I can’t imagine how difficult this is for you, with both parents. I’m no expert but I don’t understand why someone would advocate keep reminding someone when they understand in the moment but then dont remember. My view is that is just multiplying their distress. For example, I never mention Alzheimer’s in front of my husband because I don’t need him being upset over and over. I have read on here many times that you are just making someone grieve again every time you tell them. I’d be tempted to tell the home that you have taken advice (no need to elaborate from where) just to give her significant updates and then only once and then stick to the other members ‘love lies’. Good luck and look after you.