I care for my mum who has Parkinson’s related dementia. Everything she needs is downstairs because of her mobility and she hasn’t been able to climb stairs for about 3 years. Last night she somehow managed to get herself upstairs on her own and into my bedroom. She was very distressed and for the first time ever had forgotten my dad has passed. She told me “I can’t find your dad”. I know that it’s best not to contradict her but I really didn’t know what to say to her and I’m obviously concerned for her safety
How do I handle my mum not remembering my dad is no longer with us?
- Thread starter SueB1321
- Start date
What a horrible situation. If you can think of something plausible on the fly, this seems like a good case for a “love lie”. He’s just nipped to the shops, he’s visiting a sick friend for a couple of hours etc. Anything that fits with your father’s life as he lived it, and would calm your Mum at that moment in time.
So sorry that you’re having to deal with that. It’s very upsetting for you - others who’ve gone through the same thing will be along with more advice shortly.
So sorry that you’re having to deal with that. It’s very upsetting for you - others who’ve gone through the same thing will be along with more advice shortly.
I just tell mum he’s with my brother watching football/ cricket, he’s not feeling too well and is having a rest at his sisters, he’s on a works thing, he’s just popped out to visit Dave etc. I made the mistake of telling her that he had died when she first asked.…. Never again. She was devastated. Why did nobody tell me, I’ve missed the funeral etc…. Then she was very tearful and depressed for days.
I read a wonderful book called Contented Dementia a couple of years ago, and the author suggests (as others have done) to come up with a story that will reassure your mum and give her some explanation as to where he is that would put her mind at rest, that is in keeping with the sort of thing he would have done when he was alive and therefore believable. You might want to have a few options up your sleeve but they can be recycled as often as needed. The author goes on to suggest the very best solution is finding a story that would not just reassure your mum that he is safe and only temporarily absent, but one that would actually make her feel proud or happy for him and generate positive emotions. Examples might be that he is helping someone out with something specific he used to do regularly or doing something he was very good at and used to enjoy. I've not had to use these techniques myself yet, but I read these suggestions with interest as it was revolutionary to me and also the idea of lying didn't sit well with me at all (it horrified me to be honest!) until I was really able to understand the ramifications and put the other person's needs above my own. The author spent a lot of pages stressing the importance of taking every opportunity to generate positive emotions, and avoiding causing distress, regardless of the reality, because the brain of the afflicted person just isn't capable of processing reality anymore. Therefore any information that causes them distress is pointless regardless of whether it is true or not, and extremely detrimental. The main premise of this book is how to give someone with dementia the best quality of life possible regardless of how advanced their symptoms, and that being detached from reality does not have to mean a life of misery. Doing or saying anything that makes them feel good and result in positive emotions will improve their quality of life dramatically, and if that means setting aside our own deep seated ideas of what is is right and wrong (i.e. we shouldn't lie and should be open and honest) then so be it, as the discomfort we might feel should remain our problem and for us to deal with, not their problem. Being kind and compassionate trumps being truthful in this situation. I thoroughly recommend that book, I found it incredibly inspiring and reassuring and it is full of practical suggestions. The author is Oliver James and he's an absolute hero in my mind.
I think it depends on how your mum is at the time? I know with my Mum there are times when she’s more aware than others. She’s actually has said - dad has died hasn’t he? And at those times I’ve said yes because of how she’s begun the conversation but at times when she seems distressed or super confused and asked if I’ve seen dad? Or is he still at work? I’ve said yes and effectively lied because I think that’s what’s best for mum in that moment.
You know your mum best so you decide firstly whether you need to answer ie. Can you distract her into something else? Or what’s the best way to answer in that moment - it could be different the next time. HTH xx
Totally agree with what everyone has already advised. Whatever response you give to any question at all she will have forgotten the previous reason you gave to anything.
It’s easy to do positive responses although its not always the truth.
Sadly it’s thinking in your feet & judging the best answer at the time to give the reassurance she needs.
Used to say my Dad was out having a quick pint with his mates & would be back soon
))) which he would have been if still with us.This is a very familiar dilemma with dementia and can be challenging. A fundamental credo and one which you will have heard of, is " never contradict ". And it is an important element in dementia care. I think one needs to be aware at any given time as to the state of mind of a loved one and be very aware of everything they say. Then you move with just what they say as if to continue their conversation, however fanciful it might appear. Of course the " white lie" seems at first dishonest, but it is in fact obeying the world of dementia, which can be completely fanciful. I remember full well a relation visiting the Home in which l was engaged as a volunteer, a young man. He quite innocently reminded his grandmother that her husband had died many years before. The grandmother was not only confused, but after the family departed she was in an agitated and emotional state for the remainder of the day. Dementia world is actuality for the one living with the disease. My late mother used to relate how she had spent such a lovely time with the children throughout her day and l was at pains to acknowledge her account as if it were totally true. She had of course spent all her time in the Care Home lounge or day room, but her "dementia world" was as real to her as my own.
Guage the conversation as it comes. Then reaåspond naturally to whatever is said in a positive way. Because retention has been eroded the ' memory ', especially the immediate memory tends to melt away quite quickly and the problem therefore lies with one's own awareness and the ability to address whatever a loved one is recounting as being " reality "... But to contradict a person devoid of capacity is much like telling someone with capacity they don't live where they live. The latter just would never understand, and probably panic or perhaps become aggressive. In many ways dementia makes the rules. To deny those rules can sometimes prove to be disastrous.
When mum started asking for dad who had passed away 10 years prior, we were advised by the CPN (Community Psychiatric Nurse) to 'enter her world' and not contradict her. We took this advice which led mum to doggedly search for my dad, question anyone she thought might know how to find him, phone up Royal Mail to see if they had an address for him, call the council, etc. Eventually we started reminding her of what had actually happened to dad, spoke about the funeral and how long he has been gone. We had to do this to stop her from putting on her coat to go outside to search for him. Now when mum asks where he is I just say to her, 'well, you know what I think...' and she tuts and disapproves and says that I'm talking nonsense but it has stopped her actively looking for him. This is the approach that I take when she asks for other relatives who have passed away and it seems to calm things down and she has said in response on several occasions that she had simply forgotten that they had died. A 'one size fits all' approach definitely didn't work in my case.
The 'one size fits all' must certainly not be taken as a guaranteed tool. Your own account is testimony to that. The trick is being able to guage the state of dementia play at any given time. Each case is different. Its the fluidity of the interaction which counts. Contradiction is always a pathway to problems. But as you clearly point out, it is not a given per se. I have seen a resident repeatedly request from Staff as to when their long departed spouse will be visiting. Yet that same resident would at times pronounce that her husband was no longer living. It's a question of day to day, minute by minute and dementia makes the rules. And the varied presentations of which there are many, makes for the challenge. One thing l have learned is that the seemingly most simple act can prove profoundly valuable. An affectionate hug or the holding of a hand can mean more than a thousand words.