My 94 year old mum wants to see her parents and brothers and sisters

[Jean Lennox]

My mum is 94 and suffers from vascular dementia. I see her every day in her Care Home and very frequently, she confronts me with "Come on, let's go. I want to go home". Until now, I have used all sorts of excuses, such as it is raining or maybe tomorrow. It never pacifies her and she thinks I am just avoiding taking her.

After reading some of your reader's comments, I felt able to tell her that because of her age, her memory is not too good and sometimes, she cannot remember who is around and who has passed away. I told her that when she asks me to take her home, it presents a problem for me because the people she wants to see are no longer here and she gets upset because she thinks I don't want to take her. I told her this if it were possible, I would do whatever I could to make her happy but what she is asking is not possible. To my amazement, she appeared to understand what I was saying so when the situation occurs again (and I know it will), I will tell her again that her memory is playing up.

I have spoken to psychiatrists who were unable to offer anything useful but your readers gave me more help than I have ever received from anyone else - thanks!!!

 

[tealover]

Hello Jean

It is such a complex disease, I have often come on TP and asked what I have thought to be a silly question only to get wonderful guidance and support, also just reading through the posts can give such a good insight into some of the behaviour we may be witnessing and just let us know that we are not alone.

God bless TP and all the TPers!!

x

 

[jaymor]

My mum is 94 and suffers from vascular dementia. I see her every day in her Care Home and very frequently, she confronts me with "Come on, let's go. I want to go home". Until now, I have used all sorts of excuses, such as it is raining or maybe tomorrow. It never pacifies her and she thinks I am just avoiding taking her.

After reading some of your reader's comments, I felt able to tell her that because of her age, her memory is not too good and sometimes, she cannot remember who is around and who has passed away. I told her that when she asks me to take her home, it presents a problem for me because the people she wants to see are no longer here and she gets upset because she thinks I don't want to take her. I told her this if it were possible, I would do whatever I could to make her happy but what she is asking is not possible. To my amazement, she appeared to understand what I was saying so when the situation occurs again (and I know it will), I will tell her again that her memory is playing up.

I have spoken to psychiatrists who were unable to offer anything useful but your readers gave me more help than I have ever received from anyone else - thanks!!!

Hello Jean and welcome to TP.

So glad you have found us and that we have been able to help in some way. We are sufferers or carers here and do help each other, we know how it really is and support each other. Look forward to seeing you on here,

Jay

 

[MLM]

It is great that your mum accepted what you said. For some people it can be greatly distressing to be reminded that someone they want to see has actually died. I'm a student social worker and a daughter-in-law to a wonderful man with early onset Alzheimer's at work the general rule of thumb as a professional is to tread carefully when people discuss relatives that they want to see but are actually dead. There is an uncomfortable question mark over whether we "go along" with the belief that the person is alive or whether we tell the person that they've forgotten the person is no longer alive. For some people it would be like ripping off the plaster over and over again to find the wound hasn't healed at all, yet it also seems cruel to play along and allow someone to think there is some other reason why they never see this person, for example leaving them to think the person can't be bothered or they don't like them any more, which of course isn't the case!
There isn't necessarily a "right" approach that fits every person, and sometimes what is right is only clear in hindsight. Trial and error really. Unfortunately I think white lies are required in some instances and they play on our minds but we do these things because we care for our loved ones, not because we necessarily want to bend the truth.

 

[Witzend]

I must say my main worry, when first using 'love lies' in this context (wanting to see people who had died) was not so much whether it was wrong in principle, but whether my FIL, and later my mother, would at some point realize that I had fibbed to them, and become even more upset or angry.

Neither of them ever did. The 'love lies' kept them happy, or as happy as they could ever be in the circs, and that was the whole point of the exercise. But then I was well aware of the state of their short-term memories and the likelihood of their ever remembering, past that moment, anything I said. I know this will not be the case for everybody in this situation. My only concern, ever, was to save them unnecessary and pointless distress. Quite frankly I did not give a stuff about any high-principled question of right or wrong. And I can still never bring myself to think it can ever be wrong to save someone with dementia from being distressed, especially when the question is likely to crop up not just once, but again and again and again.

 

[MLM]

The general consensus as a professional is that you don't keep reminding someone that their loved one has died, though I am unsure from a personal point of view how I will go forward if my FIL was to ask to see, for example, his dead parents. Do you make excuses and then hope they've forgotten the day after so you can keep making excuses for why they can't come?

I think that IS the better approach of the two (in my opinion) but I still worry that I will feel bad!

 

[Fastwalker]

My mum once refused to eat because she said that she would wait for my dad. I said that dad wouldn't mind if we started without him and he might not get there at all.

When she suggested that her long gone aunts should be there, I said I didn't think they could make it.

My mum wasn't upset at these answers. I thought I had read somewhere not to say the people concerned were dead.

 

[CJW]

The day before yesterday my mum, who is in hospital, asked me when I arrived to visit her if I had seen the film? I asked her what film was that and she told me about seeing a lovely film about all her familly. Her face lit up as she told me how well they had all looked and I was pleased that for once she had a happy delusion.Then very anguished she asked me where was Win, her youngest sister. Win had not been in the film. This made me realise that those she had seen in the film were all dead and Win the only survivor was not. I quickly distracted her saying that I had spoken to Win on the phone etc. Today she asked me if her parents were dead and I simply answered yes. She said that was sad but was quickly distracted and it was forgotten. All this to say that though it is tricky when this sort of thing starts happening you will find the best way to respond. I think we get better at judging mood as this illness gets worse and you will know when you can be truthful and when you have to be creative....love

 

[LYN T]

In a way I was lucky (!) when Pete started to ask about his parents as his continual mind set seemed to be in his early twenties or before. He couldn't remember anything (or appeared not to) from the last forty odd years. So when he asked about his Dad (frequently) I always had a ready reason for him not visiting. These little fibs seemed to pacify him and he never remembered what I had said anyway.

Difficult I know to keep up

Take care

Lyn T

 

[Onlydaughter]

My mum is also 94 and says her mum is around the place along with her brothers, sadly all long gone, she has lived more than 40 years without them, but they are around the place. Although we understand about the memory loss etc it was explained to me recently like this. Their memory is like a library book shelf, the top shelf containing the last ten years say 2000 to 2014, the shelf below from 1990 to 2000, you get my drift.... Sadly the top two, three, four shelves has all fallen, my mums depleted memory is somewhere in the late 1950s to 60s when I was still in junior school, as I'm now a pensioner, no wonder she does not know who I am, her daughter is still a child. Just cope as best you can, try not to get upset they don't mean some of the hurtful things they say, it's the illness speaking. Stay strong.

 

[Teanosugar]

Lost Loved Ones

My dad is 85 and has had vascular dementia for at least 8 years, that was when I cottoned onto something being wrong but think he was showing signs earlier to my mum who died 9 years ago. We finally got a diagnosis 5 years ago. For quite some time he functioned well, remembering mum had died and would talk about her, spend time looking at photos and a dvd he had (memory one made by me). As time went on he started to have hallucinations about mum, some of these were very distressing. I found him cowering in a corner, with all the furniture moved (big items and he is a small disabled man) crying asking mum to stop asking him to move things as he was tired. Dad had episodes of seeing dead people and his old dog for years before dementia, so I have often wondered if he was actually seeing dead people, as mum was very demanding and would always make him move things, do what she wanted etc. After a lot of these episodes his doctor put him onto a medicine to lessen his hallucinations which for a time worked, but he has more of them now, and they can not up the meds, infact had to lessen them because they were causing other problems medically.

Dad does not know me any more, he used to think his daughter was a little girl (I am almost 60), but now he has regressed so far, he thinks he lives with his mother in a house he left when under 8 years of age. He used to constantly ask for my mum, his wife, and whilst he was not upset I would ask him where he thought mum was, and often he would say "is she dead" and I would answer him honestly when he asked. If he just talked about her I would not say anything more but just work through our good time memories. Once he got past a certain point dad does not remember even being married, but occasionally he does say he was married to a good girl but hasnt seen her for ages. He did get upset last year, asked his care home staff to phone his wife as she had run off with all his money (what money lol) and he needed some money to get a taxi to his mums. As he soon forgets what he has said, usually you can fluff through when he asks for people who are no longer with us, just with I dont know dad have not seen them for ages, I will try to get in touch when I go home, that did suffice for ages. He has now got to the point only his mother will do, he cries for his mum (they were very close) but luckily I was close to her too, so I just try to chat about good times we had together. He does sometimes say I miss my mum but I suppose she is dead, when he says that I say yes I miss her too dad. He does not seem to get fixed on people being dead any more, I think he has got too ill to remember now. It is as if he is regressing back to the start, from 85 to age 5 almost.

As for all the professional ideas of you must not tell them people have died, I think as a long time relative of your loved one, you know them best. It is up to you to decide how to handle these questions, there is no right or wrong, there is simply trying to do what you feel is best. My dad was always a very honest man, and I feel wrong telling lies to him, so I judge the situation and if I think telling him the truth will not unduly stress him, as he wont remember within a couple of minutes anyway, what right do I have to insulate him from the truth. Dad has shed a few tears some times for his mum or his wife when I have told him yes dad they did die, but they soon stop, and I do not see what harm this does, but to have him fondly remember a loved one and grieve a little. Yes he has dementia, but he is still that same person inside, a person who has the right to have his questions answered honestly, with empathy and maybe it is just another form of memory therapy, where you talk about the life they have had, which includes good and bad times.

There is no template for dealing with a loved one with dementia, we fumble through best we can, with best intentions and if we make mistakes, that is life, none of us are perfect and that includes professionals telling us what we should or should not talk about. The person who knows best is the person who knows them best.

Good luck, the dementia roundabout is still turning here.