Advice

When is it okay to lie to someone with dementia?

My Mum has been in a Care Home for the last month. It is one of the best and the ladies that look after her are amazing. She does like the home and the people in it too. However, she does want to go home. She doesn't remember the apartment she was in for the last 9 years just the house she was born in. I let her know that she will not be going back there and talk about her apartment and that there is work being done on the bathroom. I have not told her she will not be going back. She also misses her little dog, I am looking after him and take him to see her as many times as I can but she wants to keep him there. She does not care for him properly so cannot have him at the home. I am having a really hard time coping with the loving lies I am telling, I have started Wellbeing Counselling in order to get over my guilt. My counsellor gave me some great advice and it is really helping. It is one of the hardest things I have ever done in my life to put my mum into a care home. She always said she never wanted to go into one but we also know that she would have never wished for Alzheimer's too. I wanted to join a group for other people in my situation but could not find any either.

What about when the same question is asked repeatedly every 30 seconds or couple of minutes or will ask somebody else the same question as if they don’t believe you or are playing you off between each other like my mother who has an unspecified dementia does with me and my father. We have a policy of being true full In a gentle way

Cutlery ! I dread that word ! My mother bought some white plastic handled cutlery back in the 80s or so, and over the years the plastic broke, and the metal part of the knife fork or spoon thrown away or relegated to the shed . But since My Dad died, Mum noticed, as if for the first time , there were only some of the set left, and began suspecting the Carers of stealing it. There is some reason for her thinking this , because when she was a child back in the 30s in a very poor area of Lancashire and they had a maid in to help , the maids occasionally stole items . My Grandmother turned a blind eye because she knew the maids were so poor . However the whole thing has escalated over the last 2 or 3 years when Mum started hiding cutlery . First she hid her "best" set , and gradually not only other cutlery , but all kitchen tools : wooden spoons, sharp knives, whisks etc so that it became impossible to prepare a meal when i went over to visit. I did try buying a cheap set of cutlery and leaving it in the drawer with large labels saying "This is Pat`s" cutlery please return to this drawer after use " but that got hidden away too. These days I have a bag of basic cutlery and kitchen tools which i take with me over on visits , and grit my teeth when my lovely Mum says " but what are we going to do for cutlery - the maids/those women/those theives have stolen it all right under my nose " etc . I also have to be quick to make sure she doesn`t wash mine up and hide it away ! I have spent so many hours searching her house for things of more importance that she has lost or hidden, like glasses or hearing aids, but she has got steadily cleverer at hiding things and i find searching increasingly irritating . I have only a limited amount of time there, to do her shopping and count out her medication ,because of the distance she lives away from me, and i can`t drive in the dark . When i recount some of the things she gets up to, people who haven`t direct experience of dementia tend to laugh , ( tin openers in the wardrobe/airing cupboard) and indeed i do eventually see that it`s funny, but at the time i see red, and that`s the hardest thing i think, i have learned that there is absolutely no point in explaining what has happened to the (damned) cutlery or saying anything reasonable like " Nobody wants your old cutlery - it`s so cheap nowadays " her brain can`t reason things out any more . But i haven`t worked out what is the best thing to say because occasionally she challenges me to ring the Carers and complain , in which case , i have suggested she do so. I have spoken to them and they understand, and with good humour, but i have no idea how they respond to her accusations. Maybe they have some way of calming her down with a little fib . So far all i can do is try and change the subject , i can`t avoid eating there even though to her it is problematic, now that she has "only" one knife fork desert spoon and a coffee spoon "left" in the drawer! I cannot think of a lie that would appease Mum as to the whereabouts of the missing cutlery . And really i suppose there could be far worse things she does !

Really thought-provoking article. One thing I'd like to add into the mix is diet: at Vegetarian for Life, we've come across numerous examples of vegans or vegetarians with dementia being fed meat. That could be because the care setting encourages it due to a belief that people need meat in their diet; it could be because, in their confusion, the resident is asking to have what everyone else is having; or it could be because they at that moment appear to have forgotten that they a vegan/vegetarian, even though that's been a fundamental part of their identity for decades. There aren't always easy answers in that situation, but we have been signing care establishments up to a Memory Care Pledge that focuses on engaging with the individual, providing them with options, and in cases of issues with capacity or cognition, offering vegetarian/vegan dishes in place of meat ones where the latter have been requested, on the basis that this is more suited to the resident's deeply-held philosophical beliefs and values. We've had a pretty good response so far from the care sector. (See: https://vegetarianforlife.org.uk/pages/pledge)

As a PWD I'm confused enough as it is without people lying to me. We struggle to make sense of what sense of what's going on around us as it is without being fed self serving nonsense, if you do not know what use is going to be made of the lie then it would be better to say nothing or just try distraction.

I work in care homes and my question is around the care plans. I am in favour of 'little white lies/avoiding the truth' where necessary to avoid distress, but my role involves care plan writing and I believe it is better to be up front and state how we would manage situations and information in care plans can enable staff to respond consistently, however I just KNOW that to be totally open and put in writing how we manage situations will draw criticism. Also, we have to read through care plans with residents and their families, so the 'white lies' would be available for the resident to see. I guess the same would apply to covert medication for example. I know we have to gain authorisation from a GP and complete an MCA/Best Interest Decision, etc. but again when residents are encouraged to view their care plans, the 'deception' albeit with good intentions and out of necessity, is exposed. I would be very interested to get other people's thoughts as I struggle to get direct answers from senior colleagues/external agencies who seem reluctant to commit to a response .

Hi, I'm really struggling with what to say to my husband when he asks about his sister who passed away more than 10 years ago. I struggle because he asks me directly "is she alive".
A closed question that leave me no 'wriggle room' to respond. He is usually looking upset when he asks and I think that he knows the answer but can't make sense of it.
I cant keep confirming that she's passed away as his grief is so intense and lasts for hours.
He is asking at least once a week.
I just need help to formulate a standard and believable response. I'm finding that I am starting to get anxious anticipating this situation occurring again.
Thank you for your suggestions /advice

My mum was diagnosed with Alzheimer’s vascular dementia last year which was initially put down to grief / depression following the sudden loss of my Dad in Aug 2019 after 54 years of marriage. Dad had prostrate cancer and mum had cared for him for 4 years.
I care for my mum alone with my husband and 2,teenage boys - my sister doesn’t live local so the majority of care is on my shoulders. I enjoy looking after mum and have changed my job to part time to be around more for her. I am currently considering anther career change to a caregiver so it will allow be the flexibility to take mum to her memory classes and COGS groups but my husband is worried this will be too much fit me - he feels I am making too many changes for mum and too much pressure on my shoulders.
Can anyone advise ?

IS IT RIGHT OR WRONG TO LIE TO PATIENTS WITH DEMENTIA?

I dealt daily with my Mom’s dementia for 7 years. There is no exact answer for “lying or not” with a dementia patient!!! There were times I told my mother the truth because I sensed knowing would ease her anxiety or anger. She was furious with my Dad and complained bitterly one day about his lack of consideration for going out and not telling her or leaving a note. (My Dad had been dead for 12 years at that point). When I told her Daddy was dead and we talked about him and I assured her that her husband would be right here with her if he were alive. She was comforted and calmed. There were other occasions, when I was out of town, and I would speak to her in the evening. She expressed loneliness and anxiety. It did no good to remind her that I had just been with her the day before because she could not remember. HER ANXIETY WAS RIGHT THEN. I would lie and say ,” I will see you in the morning “, even when I knew it would be three days before I could be with her. Keeping her calm and reassured was THE MOST IMPORTANT THING. I lied frequently when it was what would comfort her or calm her or keep her safe. I NEVER argued with her when she was wrong because it would have been as reasonable as arguing with a cocker spaniel.
My Mom lived her last years for the most part happy, or at least content. She did not have the problematic episodes of depression or combativeness or wandering; which is so common to Alzheimer’s patients. I AM CONVINCED IT IS BECAUSE I ADAPTED TO HER WORLD instead of trying to keep her in the “real” world - that was totally beyond her comprehension. I validated her worries and focused consistently on reassuring her that everything was OK. If she said,”I can’t remember”- I would say, “ It is okay, I remember and will tell you what you want to know”. Even if it meant I repeated A LOT! . I will not be convinced it was wrong and her gerontologist told me my Mom was a pleasure because, she was happy- a rarity in his practice.

I have visited a lady with dementia recently with her son, he wanted me to go in 3 times a week. It didn't go well and she wss angry with her son for suggesting it. Now I'm visiting with hef daughter while she is staying with her mother. Her daughger asked me to say I am her friend, but what if her mother femembers me and asks if I have been before?

My dad has been diagnosed with vascular dementia and Alzheimer’s two and a half years ago. I’m that time he has mainly remained steady but lockdown has been hard for him. He listened to the radio every day and heard constant ads to stay in and stay safe and wouldn’t go out or open his windows. Prior to that I had been told by his on/off partner and some friends that he wasn’t washing himself or his clothes as well. He’s still in denial he has the condition and won’t accept help. As soon as we were able to we bought him to our house To join our bubble which he has been to numerous times over the years so knows our house well. There was lots I noticed apart from the clothes issue - he packed mainly dirty clothes, had 3 dosset packs of tablets he asked the same questions many times and in much quicker succession than I had seen before. I noticed definable good and bad days. Then the biggy he admitted to forgetting important things his address, where he is going? And how to open his front door. I then rushed around making phone calls to try and get him help and support and when they spoke to my dad he refused all of it. I was so angry with him even though I called him and we had an argument about it. I feel totally helpless that I know he needs more support in certain areas and because he said he’s fine and he’s fed up of people telling him what he should be doing he won’t get it. After that when I was due to visit him he called on the morning of it and told me he was ill and not to come down. This is not the first time it has happened and is always after I have called him out.

With my wife I quickly realised that when told her Mother and Sister were long dead it was not the fact that they were dead that upset her but the fact that she had forgotten it.

I had a partner, now passed, who quite frequently saw other non-existing persons in the room or outside in the garden. Sometimes she said these were her relations. At first I said I didn't think there was anyone there. These delusions did not seem to worry or threaten her, so I changed to saying they were there to see she was alright, or similar. Seemed to work. Might help someone..

I care for a lady with dementia for the last 3.5 years. She seems to go through a cycle of violence similar to an abusive partner would. After she strikes out she calms down significantly. I was wondering if anyone else experiences this.

My husband of 20 plus years has not been diagnosed with dementia. I have been considering seeking a diagnosis. As joint owners of a business in which he has been the intellectual force our small team is suffering from his diminishing skills but lacl of recognition of the fact. From reading all of the comments it seems there is no point In seeking a diagnosis. Continuing with my practical plans to extracate us both and retire at whatever cost seems to be my only solution in hope that removing the stress as he is unable to complete projects, in the field in which he is a respected expert, become beyond him. I am sad to hear that there is so little assistance we are in our 60s, this could be a long and lonely journey.