Advice needed - how to cope with constantly telling mum her parents are dead

[jen75]

Hello, I'm relatively new to TP. My mum has vascular dementia and Alzheimer's and doesn't recognise my dad at all which makes things hard. She is constantly forgetting that her parents are dead and have been for 40 years, and it is left mainly to my dad and me to tell her that they are no longer with us and that is why they never visit! Obviously this is both hugely upsetting to my mum who lives through hearing of their death as if it is new each time, but also very hard on my dad who is 89 and finds it increasingly hard to cope with the distress of telling her such upsetting news. I was wondering if anyone has similar problems and maybe some advice on helping. She asked me tonight to help her remember and I suggested we write it down which seems a little morbid but I can't think of anything else. Jen

[Nebiroth]

Yes. Lie. Make up any plausible excuse as to why mum's parents haven't or aren;t visiting.

Constantly telling her they are dead is worse that pointless. As you have said, she suffers the shock of bereavement every time your dad tells her that her parents are dead. It is worse than futile to keep trying, mum will never be able to retain the information.

Just do whatever causes the least distress. If that means being untruthful then so be it.

I suspect that writing it down won't work because mum will forget to read it - or worse, she will forget they are dead and read the "news" each time with, again, the shock.

[Katrine]

Hello Jen, welcome to TP if you have not been greeted before! If I say that this is a very common problem I do not mean to suggest that it is trivial. Perhaps you will gain comfort from the fact that many other people have had to deal with this issue and have therefore found a variety of responses to suit their circumstances.

I think your mum no longer understands that she is in her 80's and that is why she doesn't recognise your dad at times. Her mental picture of herself is probably as a young woman, and possibly even a child, so she naturally expects her parents to be alive. Not only that, but as she feels worried or ill, she wants them to be there to look after her.

You have to enter her world and give her comfort, not the unvarnished truth, which is just cruel because she cannot process it, or hears it each time as a horrible shock and feels the grief all over again.

There is a concept of 'contented dementia', whereby the caregivers aim to keep the person with dementia in a state of 'green' if you imagine they experience their feelings in terms of a traffic light (well actually we all do that, it's just that a person with dementia cannot control their feelings by using memory, context and environmental cues to stay rooted 'safely' in day-to-day reality).

Amber is warning and red is pain, fear, danger, distress. So when your mum asks for her parents she is on amber in terms of feelings. Telling her they are a) unavailable to help her and b) DEAD! turns her feelings to red. You have to find a way of going from amber to green, so the answers you give provide satisfaction and comfort. Not easy, I know.

You will find that other people suggest various stories that might work, such as "we'll ring them in the morning", "they'll be here later", and other distracting and soothing answers.

Have you tried doing any of this already, or are you stuck on "I must not tell lies?" There are no lies when someone is in the state of mind that your mum is in, because her own mind cannot distinguish between what is real and what her memory or imaginings dream up for her. Therefore when you enter her reality, the truth must be abandoned for what is kind and compassionate, to help her cope with her feelings and to feel as secure and happy as is possible in the circumstances.

I can offer a recent example of amber to green when my mum was in hospital and got worried that she should be going home to look after my dad (who is dead). Her carer said he wasn't there any more, but my mum then asked if he had left her for another woman! So the carer just said "No darling, he loved you very much." That was enough to calm my mum's anxiety and to allow her to reflect and remember that he was dead, in her own time, without the words having to be said.

[jen75]

Hi thanks for replies, yes I've tried and do try lying, but then she gets stuck on wanting to go live with them, she seems to remember sometimes that they're dead and other times isn't sure, so she asks, so I guess it's not entirely surprising. I have to be careful because she will sometimes remember something you tell her - in the past she remembered me saying we'd go visit them soon and days later was still trying to leave the house to walk there (Leeds to Wales!) at 4am. I think it's easier for me as I don't live there but my dad has it harder as he constantly fields these questions. I appreciate the advice it's hard sometimes to know what's best, so I generally try to keep her happy and play along unless its causing more problems. Trying to do the best for both parents.

[AlsoConfused]

I try to give the answers about Mum's parents and sister's whereabouts in whatever form Mum seems to expect.

Sometimes Mum is virtually sure they're dead (so I just add they lived a long while but they were getting very tired ... it's lovely they had grandchildren / great grandchildren isn't it?). Other times, they're definitely alive to Mum (so I say they're in their own home and not coming tonight).

The questions and answers given can change dramatically in the course of a few minutes which I find very difficult to deal with. The follow-up questions are also difficult to deal with.

[Teeny]

Hi Jen
We just been through the same thing with my mam we firstly said her parents are dead and she broke her heart saying no one told her and we decided we couldnt put her through that again so we now say they are away for a few weeks and when they come back we will take her to see them, she asks now every few days but its less painful to say they are away. Hope this helps

[Katrine]

It sounds as if you are giving the right responses Jen. You can't fix it, i.e. solve her anxiety once and for all, you can only deal with her in the state of mind she is in day by day. Imagine if you had given a different answer on that occasion where she tried to walk to their house in the middle of the night? If you'd said "They don't live there any more" or "They're not on the phone but we can write them a letter" she might still have set off to see them, or to check why they hadn't been to visit.

You can't stop this anxiety because she wants something that is impossible. You can only do what you are already doing, which is to respond to her feelings and provide her with some reassurance. Just because you think something you said wasn't perfect on one occasion doesn't mean it was the wrong thing to say; it might have been the best thing to say at the time. You can't predict what your mum is going to do or think next.

As our first community mental health nurse said to us, you are always one step behind the actual reality of the person with dementia. You are always trying to keep up because everything you think you've fixed, or every situation you think you've got covered, has changed again before you know it and you're having to re-adjust your responses. Being able to re-assess, and say OK that worked a few weeks or months ago but it doesn't seem to be the right thing now, is the best way to keep providing the support your mum needs. I think you are doing an excellent job, BTW.

[Billie61]

We have similar with MIL and do not tell her that her parents are dead.

If she asks where her mum is, it is usually late at night and we say that we will try to phone her tomorrow. Her memory is only 5 minutes long, so she has forgotten all about asking for her mum, although this might mean she will ask again about where her mum is and may ask 5-6 times in the space of 20 minutes before moving onto something else.

It would be awful for her to go through the bereavement every time.

[lin1]

Hello Jen
I agree a little white lie causes so much less pain all round
but it can cause the occasional problem if the person remembers a bit later, luckily that didnt happen with my mum

mums mum died when mum was 17
Just to give you a few ideas
I used to tell my mum that her mum would be here this afternoon, would be here tomorrow, was sleeping downstairs and we mustnt wake her as she was so tired, had been but you were asleep, was coming on the train,
couldnt come today as daddy needed looking after, or had the children to see to
Perhaps you could something like this, Oh mum phoned to say she was going awa for a few days then change the subject to something that may interest mum, or offer a cuppa

[lin1]

Hello Jen
I agree a little white lie causes so much less pain all round
but it can cause the occasional problem if the person remembers a bit later, luckily that didnt happen with my mum

mums mum died when mum was 17
Just to give you a few ideas
I used to tell my mum that her mum would be here this afternoon, would be here tomorrow, was sleeping downstairs and we mustnt wake her as she was so tired, had been but you were asleep, was coming on the train,
couldnt come today as daddy needed looking after, or had the children to see to
Perhaps you could something like this, Oh mum phoned to say she was going awa for a few days then change the subject to something that may interest mum, or offer a cuppa

Here is a link to a thread on here called compassionate communication with the memory impaired, that you may find helpful
Its a tough cookie to follow all the time especially when your upset, tired etc
http://forum.alzheimers.org.uk/showt...emory-Impaired

[Canadian Joanne]

I also had the huge learning curve of not telling my mother her parents, particularly her mother, were dead, as we would have floods of tears each time. I only did that a few times.

I quickly learned. My mother would ask where and how her parents were and I would answer with "Same as always. they're fine", which was more or less true because they had been dead for over 30 years and "They're in St-Hubert" and that was true also because it's where the cemetery is. If she wanted to see them I would enthusiastically agree and say "Let's go the day after tomorrow as I have things to do tomorrow". I recycled these responses quite a long time. Eventually she stopped asking.

I feel quite strongly that only telling the truth can be very cruel sometimes. I much prefer to say and do whatever is the least distressing. Now it no longer applies, as Mum doesn't speak any more.

[jen75]

Thanks so much for the advice and support, I've been alternating between truth and lies most of the time, but sometimes it's reassuring to know that I'm doing the 'right' thing (if such a thing exists). Jen

[Butter]

I don't see it as lies. A week before she died my mother told me she thought perhaps her father wasn't coming to see her because he was too shy. I agreed that he was shy (he was) and said I was sure he was with her in spirit. (That could have been over a whiskey if you don't have a faith). She agreed but she was sad so said I would pass on her message. (She hadn't given me one directly.) And as I left the care home I passed my grandfather a message in my heart.

[vdg]

I tell my Mum her parents are working.They ran a pub so she seems to understand this.I don't like lying to her but she gets so upset otherwise.

[PurpleJay]

My mum doesn't ask for her mum but will tell me that she took her shopping earlier that day. I just say oh did you and then talk about the weather - "Did you, oh well it was a nice day for it!" etc.

My uncle recently died and I have tried to explain - he was in hospital, then he died, then it was the funeral etc. She seems to take it in but I am not sure how much she remembers. She often ravels him up with someone else. One time she went of into a story about when he gave her a tin (cake tin) and how I had to look after her dad when she was at work and that she must tell Jane (me). She often ravels me up with her sister in her stories and yet 95% of the time knows who I am in person. Weird.

Sometimes she thinks I live at the home or rather that we are somewhere else - often asking for food which I can't provide - looking at me like I am mad when I say I haven't got any bread 'why is there never any bread on a monday *rolls eyes*" bless her. When I explain that the sandwiches comes up from the kitchen on a trolley at tea time which won't be long she accepts but will often ask again and again if she is hungry, I try to distract but she forgets and her thoughts and needs are very immediate. She forgets we have already had the conversation 'have I got to cut my own sandwich then!', 'no mum, tea will be here soon', 'you always say that!' They throw you when they remember sometimes!

She will ask if we are going now? She used to ask to go home but this has stopped. When she asks if we are going I vary my response depending on the mood. Sometimes I will say, the weather isn't very nice and we should stay there. Sometimes I ask where she would like to go. Sometimes I tell her she doesn't need to go anywhere today/tomorrow (she often thinks she has hospital apps), I often change the subject eg, I am not sure, shall I make a cuppa? We have 'safe' topics of conversation which I use to distract - my work or especially my son for example. If she doesn't want me to leave I say I have to get M or have to see M before bed or have to get M's tea. He is 5 :-)

I haven't told my mum her sister is ill because I don't want to worry her and don't want to have to retell her everytime. Luckily she has asked a few times where she is and I can say she isn't very well or she had a hospital appointment and will come soon. This has eased off now as mum has no concept of time and will often tell me E visited. She thinks she is getting visits, going shopping, doing washing, sewing, making sandwiches etc. Who am I to argue. These aren't bad memories for her to be having. I only correct her now when I really feel I have no choice.

Good luck. I have no advice really, just experiences to share which I hope might help. Trouble is, you often don't know where a conversation is heading when it starts. One lady in the c/h is often shouting for her teacher or her mum and sometimes her husband or daughter. People seem to flit from one era to the next and it can be hard to keep up!

Jane x