Dementia Support Line
What not to say to somebody with dementia
Words can be helpful and uplifting, but also hurtful and frustrating depending on the situation. Here, we look at some words and questions to try to avoid when talking to a person with dementia.
For a person living with dementia, language and communication can become more difficult over time. The type of difficulties a person will face as dementia progresses will be different for each individual.
The type and stage of the person's dementia will also be a factor. While the person living with the condition may have difficulties with finding the right word, the words that other people use are important too.
Good communication can be key to helping the quality of life for the person with dementia. Here are a few of the words and questions it may be best to avoid in conversation.
7 things to avoid saying to somebody with dementia
1. 'Remember when...?'
While it can be tempting to try and jog the memory of somebody living with dementia, this kind of question may highlight the fact that the person has memory problems. It can also sometimes feel like the person is being tested.
This can be a frustrating or painful experience, and there’s also no evidence that prompting the person in this way will help them to recall or hold on to memories. It can be pleasant and comforting to talk about the past, however, it’s usually more helpful to lead the conversation and allow the person to join in.
Try this instead:
Instead of posing a question, try leading with ‘I remember when…’. That way, the person can search their memory calmly without feeling embarrassed, then join in if they like.
2. 'I've just told you that'
It can be difficult answering the same question several times, especially when you are trying to keep frustration or upset from your voice.
However, reminding the person that you have just answered their question will not help them retain the information for next time, it is likely to just remind them of their condition. This can be distressing for you both. Bear in mind, that for them, it is likely to feel like the first time they have asked the question.
Try this instead:
Try to remember that the person cannot help repeating themselves. It is important for them to feel heard and understood.
Answer repeated questions calmly and patiently, with an even tone of voice. If you feel the need, take a break, and remove yourself from the conversation for a while.
3. 'Your brother died 10 years ago'
A person living with dementia may forget about a past bereavement or ask for somebody who has died. Reminding them of a loved one's death can be very painful, and they may react as though hearing the news for the first time all over again.
How to respond to these types of difficult questions will vary for different people in different circumstances, however, it's always important to show sensitivity and minimise any distress.
Try this instead:
For some people, encouraging them to talk about the person they are asking about can be comforting. Distraction techniques can be useful, although try not to avoid the question if they keep asking, as this can cause the person to feel more anxious.
Find out how the person is feeling, sometimes asking about a particular family member or friend is due to the person having an unmet need, such as wanting comfort or reassurance.
4. 'What did you do this morning?'
Avoid asking too many open-ended questions about the past, as it could be stressful for a person with dementia if they can’t remember the answer. While it might seem polite to ask somebody about their day, it’s better to focus on what’s happening in the present.
Try this instead:
Instead of asking them about their day, speak briefly about your day and give them time to ask you questions about it.
They might then offer information about what they have done. Talk to them about the present and use items in the environment such as photos or ornaments to stimulate conversation.
5. 'Do you recognise me?'
It can be distressing when somebody with dementia doesn’t recognise you, especially if you have a close relationship with them. Remember that it is likely to be upsetting for them to not recognise people around them too.
Asking the person if they know who you are can make them feel guilty or anxious if they don't remember or offended if they do.
Try this instead:
The way you greet somebody with dementia might change depending on the stage of their condition – judge for yourself but keep it friendly. A warm hello could suffice, or it may help to say your name and your relationship to them each time.
6. 'Let’s have a cup of tea now, then after that we can go for nice walk and get lunch and something else to drink in that café you like next to the big church in town.’
Long, complex sentences can be difficult to grasp for somebody with dementia. It's difficult to process several ideas at once as cognitive abilities slow down, so it's better to give directions or instructions one step at a time.
Try this instead:
Use short, simple sentences as much as possible. Avoid speaking too much in loud or busy environments, and wait until you have the person’s full attention before you start. During a conversation, give the person enough time to process what you are saying.
7. 'I'll just help you use your little spoon there, love?'
‘Elderspeak’ - which can involve talking in a high-pitched voice, using words like ‘love’ or ‘deary’, and generally speaking to the person like they are a child - should be avoided. This can be patronising and infantilising for a person with dementia.
Try this instead:
Always remember the person behind the dementia. It’s fine if the person needs you to speak slower than usual, but try to keep your tone of voice the same as with anyone else.
Some people may like being called ‘love’ or ‘dear’, but unless you know the person it is usually best to use their name instead. This helps keep their dignity intact.
This article was first published in 2017 and most recently updated in January 2024.
Carers: looking after yourself
Supporting a person with dementia can be challenging. Looking after yourself is important for both you and the person you are supporting.
Beverly McGill
saysHello, my doctor recommended that I come and talk with others who are dealing with dementia. I'm here, but not to complain. I have been caretaking for 13 years. First 3 years with my mom who passed in 2013. Then my husband had a stroke which resulted in dementia. This is the 8th year and he is declining and exhibiting many of the late stage symptoms, and it is challenging. At night, I literally "drop" into bed exhausted, I am grateful for the bed alarm. He is 89 years old and we have been married 31 years. Just celebrated on June 10. I was talking with him, telling him how much I enjoyed being his wife and how excellent he was at being my husband. I reminded him of how he had cared for me and now it was my turn to care for him. God reminded me that somewhere inside the fragile and confused man he is today is the strong, capable man he was when we married. Love keeps me going. He is in and out, sleeps a lot, still eats, not much communication and bathroom habits have changed dramatically this week. He is almost like an infant and I don't know if he will change for the better. Oddly enough, my time dealing with babies and pets for 55 years helps me to deal with this. And the VA is most accommodating with supplies. I don't plan to put him in a facility. On our anniversary, I ended the conversation by kissing his hand and telling him that I love him. To my delight, he kissed my hand too. Wow! I won't forget that moment; and then the next day, he declined into a different kind of "not knowing." Doesn't know how to do anything independently now and is confused about where rooms are in the house. Doesn't even think it's our house. I don't know if this is permanent, maybe he will come back a bit--I use essential oils on him for memory, focus, clarity--but I don't know. What I do know is that he feels safe with me; follows me all day. Very unsteady on his feed -- nerve-racking. Heartbreaking; but whatever, it's our journey and I am currently able to travel it with him. I want to tell you that I am family with all of us who caretake someone with dementia; be encouraged and try to remember that somewhere in that mental void, delusion and debilitation of the loved one today is the same loved one of yesterday. I envision him falling into a deep darkness and the only light he sees is me and he reaches for me. It appears that the light gets dimmer and dimmer. I can't imagine what kind of terror accompanies dementia, but love keeps me reaching for him as he is reaching to me. Heartbreaking.
Thank you for sharing, Beverly.
It sounds like you might benefit from talking with other people affected by dementia within our online community, Talking Point. Feel free to browse and read others' experiences, or create an account to reply and connect with others. You may find similar situations to you and your husband's shared there: https://forum.alzheimers.org.uk/
We hope this is useful.
Alzheimer's Society blog team
Arthur Johnson
saysMy deepest sympathy and admiration for you. My wife andcI are both 88. I have mental capacity and have cared for her on my own for five years before we both moved into a care home. Have you thought of speaking to Samaritans who may put you in touch with people might help. You have done enough and need a lot of love and support. Try to get it.
Elaine
saysThat was wonderful reading of this woman caring and loving her husband through his condition, no matter what happens she is still there for him.
I did not appreciate what the patient must feel like and this letter gave me an insight as to what it must be like and that it can change from day to day.
I must say credit to this lady and wish her and her husband the strength to live another day.
Catherine Fowler
saysBeverly you beautiful amazing lady. X may you get the help and support you need also to care for your beloved husband. God bless you both. Xxx
Paulette
saysBless you and your husband. You have touched my heart .
SANDRA MAVIS THWAITE
saysYou are doing an amazing job, congratulate yourself, you are all he needs. Love conquers all.
Marie
saysThank you. You made a good point in that it is a kind of darkness for them and very much frightening to them. We are the light that shines through GOD the Father, by His Holy Spirit.
Joe Panico
saysIt is so surprising and sad to me that I don't see any comments from spouse caregivers. My 70 year old wife of 50 years has been suffering with alzheimer's for the past 8 years. I have been her sole caregiver until recently. She now has round the clock caregivers which is very, very expensive in the U. S. I am horrified by the thought that I will have to put her in a memory care unit since I am unable to give her proper care at home with what amounts to what I call babysitters. I am heartbroken about this terribly unkind thing that I must do.
Hello, Joe. We're really to sorry to hear about the difficult time you're going through.
It sounds like you might benefit from talking with other people affected by dementia within our online community, Talking Point. Feel free to browse and read others' experiences, or create an account to reply and connect with others. You may find similar situations to you and your wife's shared there: https://forum.alzheimers.org.uk/
As you're based in the U.S, you may wish to contact the Alzheimer's Association helpline: https://www.alz.org/help-support/resources/helpline
We hope this is useful, Joe.
Alzheimer's Society blog team
Audrey
saysJoe, you are not being unkind to your dear wife. I can understand how you feel, but she clearly needs more help now and will be safe & cared for by professionals whilst you can visit her as her husband again rather than her carer. Be gentle with yourself, you are doing your best for her. We've been married 57 years, I can understand your feelings xx
Lesley Bondzio
saysHello Joe
I care for my 78yr old dad in his own flat. We have cameras set up so I can check in on him whilst I'm at work. He has vascular dementia and is in the final stages. He now has carers come in 4 x daily to help him as well. I have lost many a nights sleep worrying what to do, feeling lonely and isolated. (We lost my brother 3yrs ago and this certainly sped up his symptoms.)
He's had no visitors because of the pandemic. And become more and more agoraphobic, which has made things 100 times worse! He lives in sheltered accommodation (for over 55's), which in the UK is Independent living but has a building manager on site and as part of her safeguarding role pops in to check on him. Everyone always asks after him and misses his laughter and singing. He used to pop into the office every morning on his way to get his morning papers and quite often would bring back a treat for someone or another.
Although having had both of my Covid 19 vaccinations, I myself got Covid. My son caught it from school, a few days later so did I, then my husband. It was 2wks before I could visit dad. During this time, he had another decline in his dementia, was giving the carers a hard time and making a complete mess around the flat. He would put food in the most ridiculous places, including the toilet, a photograph, the cupboard in his bedroom. He flooded the kitchen twice (thankfully, I had disconnected the cooker a long time ago for his and everyone else's safety. I cried and cried. I felt so helpless. Having spoke at length with the care managers and his adult psychiatric nurse, amongst others, I have had to take steps to have him move to a care unit which specialises in dementia. I feel very blessed that he has a place as it is an excellent home from home. I have to accept that he needs 24hr care. I am currently completing the paperwork.
Obviously, I feel that I have let him down.
My 3rd day back to work after Covid I had to shampoo the carpets as they were filthy. I decided to do the bedroom one that night and the lounge and hall next time. What should have been 30mins at most, took over 2 1/2hrs because he was in and out in and out. And right when I had just finished, he brought in a glass of juice and knocked it all over the clean carpet! Next I had the task of trying to get him into the shower. He'd been refusing for the carers and the last one he'd had been 3days before when I finally got to see him. My first 2days back to work I had to go straight home to bed, but on day 3 I was feeling less tired. He is not regularly incontinent, but in need of a daily shower and clean clothes. He gets very agitated now and will hit himself, or bang his head, or even raise his hand! But something always stops him! Once he's in he's fine, it's just getting him in!!! He's like a 14stone 2yr old! I arrived at around 5.45pm and I fell through my front door at 10.05pm and went straight up to bed. Although this was later than usual (slower than normal thanks to Covid) but going after work each day led to me not getting home until between 7.30-8pm on a week night.
His father had Alzheimer's and dad was his carer. They were both the most selfless, kindest and generous men you could possibly meet. Not an unkind bone in their bodies.
Somebody said to me 'But Lesley, you have done everything you could possibly have done for him and then some. Let the residential nurses takeover and you go be his daughter! You both deserve that.'
I wrestled with that for a couple of weeks, because, after all. I am his daughter, it was my duty, but I wanted to do it. I needed to do it! Then what she said has finally hit home. I am now beginning to realise how right she was.
I don't love my dad any less and I do believe I am doing the right thing .........for him.
Do I feel guilty? Of course! But I've come to realise that that is a natural feeling that is ok!
I'm sorry for babbling on, But once I started, I couldn't stop.
My point being, that let your wife be taken care of and you enjoy (as you can,) the remainder of her illness as her husband. Make more memories that will bring you comfort in the future, rather than your last memory of you cleaning or feeding her. Take lots of photo's that will bring a smile to your face.
Emma Clough
saysMy father had a stroke in January and in now in a residential home. He had many weeks in hospital, became Covid positive, isolated and moved 10/12 times so far. He is in the process of being assessed for dementia. He is desperate to go home to his wife of 55 years. She is able to visit now but we are all finding it very hard. He lacks any insight into the issues about going home ( he’s very frail, believes he can drive, walk up & down stairs etc) and is very upset and demanding his freedom. He hates the home and is very angry with us all. It is hardest for my at the moment. We try to distract him but it’s not working.
Sarah Saunders
saysI am living a very similar story to you. I’m dads only child and have LPA. He was in hospital for 8 weeks and transferred to a Care Home that doesn’t meet his needs. I think he’s moving to a dementia specific nursing home next week. When myself and mum talk to him on the phone/Skype he asks us when he’s coming home. He says there’s nothing wrong with him. I feel like a coward as I know I am not speaking with him as often as I feel I ought to as I don’t know how to answer him. My mum is better with him and reassures him she’s keeping his chair warm for him but she finds it hard too and has Alzheimer’s herself. They think dad has Vascular Dementia which has had a very sudden and devastating onset. The Older People’s Crisis Team are involved. I’m hoping that once he’s settled in the new Home then I will be able to visit but it’s a hope/dread situation.
JR
saysI am the sole caretaker of elderly parents ages 85 and 91, the latter is my dad in dementia. As hard as it is to take care of him now, it would be a million times easier if my mom were not here. She is unbearably neurotic and chatty, constantly inundating him with conversation, hovering over him, sometimes shaming him (unintentionally). I've tried to tell her, guide her, ask her, etc., but she's also slipping cognitively and it just doesn't work. I'm at wit's end. I wonder what the best strategy would be.
Lisa
saysYou seem to be in a terrible place I feel so bad for you. Your mom means well I’m sure but I can imagine it’s very difficult
Fiona
saysMy parents live in the Republic of Ireland, and are 76 and 80. My mum, 76, has dementia, and is deteriorating. Dad looks after her alone, says he doesn't need help yet. She has become convinced that she's living with a stranger, calls Dad by his first name, and wandered down the road to a neighbours, for help with 'removing the stranger from her house'. She called me yesterday to let me know that my Dad passed away recently, she buried him, and I should let the other girls know, (there are 4 of us daughters, all living overseas). Dad is very much alive, and reports that she says this often, (that he has passed away). When she phones me, to report that Dad has died, do I just go along with it? I tried telling her that he's still alive and living with her, but she got too upset, so I changed tack, and said how awful it is, and that I'd let the others know. Had I done the right thing, and if she phones any of us, are we all to just go along with it?
Fiona
saysMy mom hasn’t had a diagnosis yet but she’s 92 we are waiting for a GP referral. She has just beaten Covid19 but everything seems to have speeded up. We’ve also been hit with multiple UTIs because she is catheterised which have really knocked her for 6 with hallucinations and delirium. I am her main carer as I can work from her home but I am a little worried about how I am handling some of her confusion. She has started asking where her two girls are and I’ve worked out she means me and my sister. We have started telling mom the girls are staying with my sister and this calms her down but the lie is growing. She asks what they’ve had for tea and whether they are coming home in the morning and I feel so bad telling her stuff that isn’t true. I suppose what I’m asking is am I doing the right thing agreeing with her or should I find other ways to deal with this. It’s all pretty new to me and I don’t want to get anything wrong. And I never want her to realise I’ve lied. I just want her to be happy and not stress about things.
Lara
saysHi Fiona
I think you are doing the right thing, you are trying to keep your mum happy and relaxed not worrying about the girls. The lies are for her benefit and what I find is that as you get more experienced in dealing with the confusion you lie less , you learn to be more vague or how to change the conversation. No point hurting someone when their capacity to understand what you say has diminished. It is a very sad journey to be on , I don't think you ever get over feeling bad when a lie is required but you do get better at finding ways to avoid the conversations and to direct the conversation. I suppose it is a little like grief, it doesn't get easier but you do learn to l live with it. I think your goal of wanting her to be happy shows you have her best interests at heart so go with that. All the best to you .
Fiona
saysThank you 🙏
Stephen Hookings
saysMy mother had a massive stroke so would get confused. I am Asperger's so at first I would correct her. My wife had to explain to me it isn't helping - so I had to try to retrain my natural instincts. Actually it taught me a lot more about accepting and perpetuating "white lies" to ease any discomfort / distress for bringing reality crashing down. Find a decent friend to offload on and when your loved one finally passes you hopefully will look back with rationality and see you did the right thing. Before my mother passed from subsequent stroke (2.5 years later) we had some lovely conversations including having to give full profit and loss for the range of Sandwich shops she owned - if I ever find out those were real I will want my share :-)
Being thanked for being a good son was reward enough. Love your mum - which I am 100% positive you do - and ease their journey. Don't forget to have some "me" time to restore your energy levels.
Fiona
saysStephen. Thank you so much for your words. I take comfort in that she regularly tells me I am a wonderful daughter and she would struggle without me. Your words are so kind and I feel I can continue to support mom I without worrying. I hope I also find comfort when the time comes to say bye. Thank you again.
Catherine Cortez
saysI think it's fab that she enjoyed the idea of the sandwich shops!!
Tess
saysFiona, I went through the same feelings as you when my mum started asking me about where is her baby (meaning one of her grown up children) she used to get so distressed. The only way to calm her down was to lie. Used to say the babys sleeping, with her dad, sleeping anything I could think of to calm her down. If you tell them the truth you just confuse and upset them and achieve nothing but frustrate yourself in the process. Its all about calming them down and distraction at this stage. Its hard to accept at first for us as the grown up children but easier once you do accept it and learn the things to say that do calm the persons down and you can use the same explanations over and over as they never remember them.
Linda Nalepa
saysMy mom has been in a nursing home for 2 years now. She has Dementia. My dad passed away 9 years ago and she keeps asking for him. I do tell her he passed because she wants to know why he doesn't visit. It's extremely sad. She forgets and asks again the very next day. I, and all my siblings, don't know how to communicate with her. She doesn't want to be there, she complains about everything at the home, (bad food, cold food, she's cold, nasty roommate etc.) We don't know what to talk about but realize she's lonely. Covid hasn't helped, we have not been allowed to see her. I feel bad for her but don't know how to help. Any suggestions?? Is there anyone I can talk to??
Linda
Hi Linda,
If you are based in the UK, please call our Dementia Connect support line on 0333 150 3456. Our dementia advisers are here to provide advice and support seven days a week: https://www.alzheimers.org.uk/dementia-connect-support-line
Some people also find it helps to talk with others who have gone through or are going through similar experiences. If you think this would help, you can visit our online community, Talking Point, for peer support: https://forum.alzheimers.org.uk/ It's free and open day or night.
We hope this is helpful, Linda.
Alzheimer's Society blog team
Valerie
saysHi Linda
My Dad is in a nursing home and in the beginning he would ask about our mother all the time, she died 39 years ago.
They do say not to tell someone with dementia that someone is dead when they don’t remember as they have to relive the loss again so that’s what I did. I went along with it and it helped.
You could say he’s coming to visit later or tomorrow. The short term memory is bad so she’ll likely forget.
Maybe trying to agree with her and also say you’ll look into the bad roommates, the bad food, get her some warm clothes etc. Anything that comforts her in the moment is good.
All this helped with my Dad.
Hope that helps. It’s a tough time for all.
Valerie
caretaker of mother w/Alzheimer's
saysWhy aren't those feelings of not liking the food, of the food being cold, of her being cold, having a nasty roommate reflect the reality?
Institutional food is almost never good. It gets cold on the way to the room. Very old people get cold much more easily. And her roommate very well may be a jerk or depressed.'
There are solutions: visit and bring food she likes. Sit & eat a meal of food you've cooked or take-out food that she likes. Let her choose favorite take-out food. Bring warmer clothes, a blanket or shawl. Make sure the AC isn't blowing on her. Maybe she can be moved to a different room with a nicer roommate or get a single. Or maybe you could take care of her at home--that's what I'm doing with my mother for as long as I can.
Wendy Elias
saysMy dad has dementia, he’s 80, my mom is 76 and trying to get along with him by herself except for texting me all the time complaining about him, she stays up late and gets up late, my dad goes to bed early and gets up early, eats cereal and coffee then takes a 2 hour nap, that makes mom mad, he wants to eat dinner early and she won’t fix dinner till later so he eats a bowl of cereal, gets mad and goes to bed, I’ve tried to tell mom what to do to help but she won’t listen, right now they are fighting because mom want him to wear a coat that he don’t want to wear. Please help me give mom better advice, thanks, Wendy
Hello Wendy,
We are sorry to hear this - it sounds like a really difficult time for you and your parents.
If you are based in the UK, we recommend speaking with one of our dementia advisers to discuss the situation. They will be best placed to provide you with advice and support. Please call our Dementia Connect support line on 0333 150 3456. (More information on opening times: https://www.alzheimers.org.uk/get-support/dementia-connect-support-line)
If you're based in the US, please contact the Alzheimer's Association helpline: https://alz.org/help-support/resources/helpline
Or if you're based in Canada, please contact the Alzheimer's Society of Canada helpline: https://alzheimer.ca/en/Home/ContactUs
Wishing you all the best, Wendy.
-
Alzheimer's Society blog team
Becca
saysThe easiest way i think, is that the world he has created for so long, the routine and structure that was once, may no longer exist to him, he has a new world. With this a new routine he cannot follow his old routine, like late dinner and late bedtime etc. She has to jump into his new world, his new routine. In a care home it is about person centred care, their way not the staffs way, because it would be confusing to them as to why they have to get up at a certain time. Dementia is a process and as he is able to eat and make a cuppa on his own now, means that his dementia is not very progressed and it will unfortunately get worst. I suggest that your mum joins a support group, because she will need the support. Because although this is hard for your dad who has a diagnosis, someone who cares for a relative with dementia, its like grieving for the person you once knew, and it can feel like a stranger at times. Your mum has to grieve and it is not an easy ride. Get as much support as possible and it is absolutely fine say i need help, or i cant do this anymore, because this is such a hard process.
Jackie
saysI really feel for your Mam. I had my Dad stay with me for some time and he used to do some things that was out of character and odd that used to irritate me. Like sleeping fully clothed in jeans, or making cups of coffee with a tea bag floating in it. I used to tell him constantly it was unhygienic regarding the sleeping attire or that he was drinking a concoction of tea/coffee. All it did was aggravate him (and me). Then one day I took the view point 'is it going to kill him sleeping in jeans or drinking strange concoctions of tea and coffee?' the answer was 'no'. So I guess my advice to your Mam would be, try and not sweat the small stuff and try and make compromises. If he want's to eat cereal let him, if he doesn't want to wear a coat, don't force it (but have it handy if he gets cold), maybe when she cooks their evening meal and he doesn't want it (because he's had his cereal or has gone to bed) she could keep his portion to reheat the next day for when he's hungry again, and keep that cycle going. Don't know if this will help x
Barbra Racy
saysMy daughter, a Veteran, is in mid 50s and is diagnosed with early dementia. She has FTD. She is temporarily living with us, her parents, ages 82 and 90 and it's taking a toll on us. Also she is very bored and requires lots of attention, We're striving to somehow get her into a Nursing home for proper care but just don't know where to start. We do not have power of Attorney over her health or finances.
Jackie
saysFirstly, I just wanted to say that I am very sorry to hear about your daughter. I started the Power of Attorney journey with my Father (75) just after Christmas for Health and Welfare and Financial affair rights. Is she able to understand anything at this point? if she is, she doesn't necessarily have to complete the forms herself (as they are quite lengthily, but simple enough). You can do it on her behalf and have her sign in the relevant parts if she is willing. There are also sections for witnesses that know yourself and your daughter to sign as confirmation that they are happy that you are acting in her best interests and don't feel that she was coheres into signing the documents against her will. If she is no longer able to understand, or able to make those kind of decisions you can apply to the Court of Protection to become their deputy in order to make decisions on their behalf. I have not had to go down this route as my Dad is still very aware, so I don't know the process. Don't know if this helps, but good luck and make sure that you are able to care for yourselves at this difficult time.
GD
saysMy mum (84) is caring for my dad (93) who has dementia. She's always had a very short temper and is a very controlling person. She has always presented to strangers as having a perfect life and wouldn't dream of admitting any problems or shortcomings or need for help. Obviously this is making them very isolated as she won't access any support. She is very short and patronising with my dad, is embarassed by him and they seem increasingly agitated together. He has shown signs that they row a lot now and yet throughout his life he has supported everything she's ever done or said despite knowing that she basically lies a lot of the time.
This all sounds very critical of her but it's true and despite how difficult she is I do love her. I also know that this would be hard for anybody it's just that she's the furthest thing you could get from being a natural born carer.
If anyone has any suggestions they would be much appreciated. I am thinking that somehow we need to get my mum respite from him but she actually has that option and so far has not accessed it, saying he doesn't want to go. I think it because shes acting weird about it which he picks up on ..... and so on and on we go. It's just sad to see their final years so unhappy and not liking each other but maybe that's also how they've actually always been but now they can't keep the pretence up
Elaine Brookes
saysMy mum asks to go home frequently, and recently mentioned one that she lived in 30 years ago. Is it a good idea to take her to see it, or will it upset her if she can’t go in?
Just trying to put things in perspective for her.
Hi Elaine,
Thanks for your comment.
The question of 'home' is a difficult one, and it can mean different things for different people. There is some advice in this article which you may find helpful: https://www.alzheimers.org.uk/blog/i-want-go-home-what-to-say-to-someon…
It may be that just talking about your mum's past is a good way of accessing memories and understanding what she might need. If you're worried about this or the question of whether taking your mum to an old address might be helpful, I'd strongly recommend calling our Dementia Connect support line on 0333 150 3456. You'll be able to speak to a trained dementia adviser who can learn more about your situation and give information, advice and support.
There are more details of the Dementia Connect support line, including opening hours, here:
https://www.alzheimers.org.uk/dementia-connect-support-line
I really hope this helps, Elaine.
Alzheimer's Society blog team
Alice Alvarez
saysI don't think it would hurt, she may remember. Even if not, y'all can share thoughts about the house, street or surroundings. Might just be a new moment you both can share in the present. I guess we learn to "accept" rather than "expect". Blessings to all.
Stephen Hookings
saysIs the property on Streetview? You could show a picture that way. I guess what might you do if you take her there and she insists on going in? Could be tricky.
Maybe distraction is an alternative technique? Do they like looking at houses? Do they recall any celebrity? "Hey do you want to look inside ((name)) house ? We can look on this application...
I am starting this journey with my Uncle. Just read this what not to say article. Oops. I need to reprogram myself.
Kate
saysWe are In a situation where the much loved and adored 97 yo mother has dementia. However to her the world and the family has to revolve around her and what makes her happy . She refuses to leave her house to stay with family for the week end or in a beautiful house like care facility. She throws tantrums like a 2 year old which last for hours and accuses her kids of persecuting her . When her son gives into her she smirks stops crying and causing distress and becomes gentle and joyful again those who love her are left in tatters how should we deal with this brahma iiur as it means there is no respite
Annie
saysMum has severe dementia and it's blooming hard work! She doesn't stop talking, asking endless questions, demanding assistance for everything throughout the day and wanting someone to be with her all the time!
She has no patience, you go into the kitchen to prepare something to eat or drink that may take a minute or 2 and she starts calling demanding things immediately, I find myself hurrying to do things just to comply. To add to that she has mobility problems so she really does need assistance but when she asks to be fed which she can manage herself although with difficulty she then gets annoyed no matter how you try and encourage, coax or praise her.
I am so fortunate she has a live in carer but even then it's hard work for her especially but also for me. I do not live with her but she phones to report I come over all the time, I see her 3-4 times a week, often staying between 3 to 6 hours. Thinking of getting the doctor to prescribe a sedative as she will get into bed early enough but make noise, bang on the walls (no doubt disturbing the neighbours) till midnight. The sedative idea is also to calm her nerves she is in worry and anxiety overdrive!
Ann Wood
saysSuch a difficult situation. You will need a lot of patience to cope. Are you getting enough help and breaks from your mum?
Thinking of you at this difficult time
Marilyn
saysMy Mum was diagnosed with mild to moderate mixed dementia about a year ago 2months ago she had a stroke(a bleed) this has affected her sight with a slight left sided deficit she’s home with me but her dementia appears to be getting much worse how does having a stroke affect someone with dementia please
Catherine Davis
saysSomeone needs to tell everyone how tough it is to be the person who has the been told they have early onset dementia!!
I am that person....having the news at 68 years old. Your entire life that you have known for years is slowly going away...that short term and long term memory just disappears...makes one almost feel they should be invisible..until you are there you won't be able to understand that our life that we knew is no more. we just wonder when will this life continue in Heaven where our sun will shine!!
Hello Catherine, and thanks for getting in touch.
We're really sorry to hear about your recent dementia diagnosis. This must be such a tough time for you.
Please know you can also call our Dementia Connect support line on 0333 150 3456 for advice, information or emotional support. Our dementia advisers are here to listen and provide support when you need them: https://www.alzheimers.org.uk/dementia-connect-support-line
Some people also find it helps to talk with other people who have gone through or are going through similar experiences. If you think this would help, you can visit our online community, Talking Point, for peer support: https://forum.alzheimers.org.uk/
In the meantime, we have a free guide that you might be interested in: 'The dementia guide: Living well after diagnosis'. The guide will help you to understand more about dementia and the treatments, support and services that are available. It includes information about how you can live as well as possible with dementia, and about making plans for the future. It's available to download as well as receive via post: https://www.alzheimers.org.uk/publications-about-dementia/the-dementia-…
We hope this is helpful, Catherine. Please do call our support line if you need someone to speak with.
All the best,
Alzheimer's Society blog team
NICOLA BALL
saysHi Catherine, I had to tell my mum her diagnosis when she was 68 aswell it was the hardest thing iv ever had to do,dementia is a cruel illness ,my mum was devastated by her diagnosis and in complete denial, however I can always see the real mum shining through even now in the last stages her sarcastic sence of humour pops up every now and then ,she never lost her spirit , I hope you are well ,I wish you well ❤
Lynsey
saysI like to believe that our struggles in this life will stay in this life. Wherever we go next will be a place where all our questions are answered without the need to ask. I sincerely hope you will have more good days then bad x x x
Nan
saysGod bless. I am the person trying to decide if I should approach my sibling who also has a daughter that is mentally challenged that is at home & my sister is taking care of her 24 -7. Both have only me to check in on them but I’m afraid to approach her for fear she will shut me out completely. Any answers to that one??
Hello Nan,
We'd recommend calling our Dementia Connect support line on 0333 150 3456 for advice on how to approach the conversation with your sister. Our dementia advisers are here for you when you need them: https://www.alzheimers.org.uk/dementia-connect-support-line
You may also benefit from talking with other people who have gone through or are going through similar experiences within our online community, Talking Point: https://forum.alzheimers.org.uk/
We hope this is helpful.
Alzheimer's Society blog team