Dementia and Bereavement

[Mati]

My mum was diagnosed with dementia six years ago and although she repeats herself and can't recall much it has generally been ok. She lives at home with me and my sister. In April my dad passed away. Mum can't remember any of it, his diagnosis with cancer, a three week stay in hospital, a ten day stay at home and his final three days in a Marie Curie hospice. Sometimes when she asks and we tell her what happened she gets understandably upset. Other times she doesn't believe us, accuses me and my sister of not letting her see him or say goodbye to him, doesn't believe she has anything wrong with her and that we are just horrible daughters. She sobs uncontrollably and gets very angry.

What should we do in these situations? We always tell her the truth but she doesn't always believe us. She thinks he is still in hospital sometimes...should we agree with her? But then what if she wants to go to see him?

This has been ongoing almost every day since dad died and it is soul destroying seeing her so upset but not knowing what to do to help her.

 

[Beate]

Please please stop telling her the truth. Can't you see how hard it must be to have to grieve over and over again? As long as she blissfully doesn't remember his death, tell her love lies. "He's still in hospital, Mum. We'll visit him together tomorrow." Then distract her with a cup of tea.
Please read this article: http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

 

[queenquackers]

No experience of this myself yet, but couldn't just 'read and run'. All the research I've done into dementia care suggests telling white lies, eg, "We'll go and see Dad tomorrow, we can't go right now because of the weather/train strike/car's broken down, etc, and repeat as required. It goes against our instincts to lie to our parents, especially on such a serious subject, but the truth is clearly too hard to swallow for someone who cannot remember that information for any great length of time. Sounds harsh, but as you've witnessed, probably less unpleasant than making your mum go through the initial shock of bereavement over and over again.

 

[Mati]

Thank you. The article was very informative. I guess I'm just worried that she will realise we are lying to her and get even more upset. I tried it last night as she asked where he was just as we were about to go to bed so I told her he was in hospital and we would visit tomorrow. She remained calm. Hopefully this will work.

 

[Lilac Blossom]

Dear Mati

It is difficult but necessary to use "love lies" - but it's the kindest thing to do. When my father died we told mother who was upset of course but because of her dementia she did not remember. So any other time she asked about him love lies saved the day.

It's good that you and your sister can talk things over and support one another.

Well done both of you for managing to care for mum at home.

Lilac xx

 

[Quilty]

Just to help with thus thread. My mum even with dementia was very good at reading faces. Make sure your face matches your words. Its incredibly hard as you are grieving and in pain too. If you lie then stick with it and make sure everyone does. In the end this is the kindest thing for everyone. Sending you strength. Love Quilty

 

[Long-Suffering]

Just to help with thus thread. My mum even with dementia was very good at reading faces. Make sure your face matches your words. Its incredibly hard as you are grieving and in pain too. If you lie then stick with it and make sure everyone does. In the end this is the kindest thing for everyone. Sending you strength. Love Quilty

This is so true. My dad still has very good intuition when it comes to bad things happening. You have to tell those love lies with a smile. When I lost my job it was actually him rather than my mum who guessed from the expression on my face. She was clueless, but he picked it up immediately.

LS

 

[AlsoConfused]

Mum's awareness of the whereabouts and the state of health of her family members seems to vary from moment to moment. The trick is judging from her words and intonation what she thinks at the actual time she's talking ... and responding accordingly.

Within a space of 5 minutes or so, Mum recognises her beloved sister is dead ... or assumes she's sulking (and that's why she's not got in touch recently) ... or feels confident she's in hospital or unable to come to the 'phone.

The only way to guess what to say is to follow Mum's apparent lead and not to worry about the contradictions with what she believed 30 seconds ago.

 

[Mati]

It worked ok last night but coming home today she is again crying hysterically but this time believes we won't take her to see Dad at the hospital and don't tell her anything. She knows she hasn't seen him in ages but now thinks we are keeping her from him. I've told her they are doing tests on him at another hospital but she obviously doesn't believe me. She forgets things but at the same time I think remembers more than she realises. I hate this illness so much, it has destroyed my mum.

 

[mhadgi]

Should I take mum to see dad in hospital?

Dad has cancer and may only have a few days to live. He is in hospital. Mum has vascular dementia and has been in a care home for two days. I don't know if it is best to take her to see Dad before he passes away or not. Any ideas?

 

[Witzend]

Thank you. The article was very informative. I guess I'm just worried that she will realise we are lying to her and get even more upset. I tried it last night as she asked where he was just as we were about to go to bed so I told her he was in hospital and we would visit tomorrow. She remained calm. Hopefully this will work.

I felt just the same in this situation with my FIL, after he started asking where MiL was. I was so afraid he'd remember both the truth and our fibs (she'd just gone to see Auntie So and So etc.) but he never did, and it was so much better than having him so upset and crying, as he had when we'd told him the truth. It does get easier - at least it did for us, so I do hope you will find the same.