Mark and his mum chatting in the garden with tea

What not to say to somebody with dementia

A poor choice of language can be both hurtful and frustrating. Here we look at some words and questions to avoid using.

For somebody living with dementia, language and communication can become more difficult over time.

How and when language problems develop will depend on the individual, as well as the type of dementia and the stage it is at. While the person living with the condition may have issues with recall or finding the right word, the words that other people use are important too. 

Good communication can be key to helping somebody to live well with dementia. Here are a few of the words and questions to avoid in conversation.

7 things not to say 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 is often a reminder of memories lost. This can be a frustrating or painful experience, and there’s also no evidence that training the brain in this way will help somebody hold on to memories. That’s not to say you should avoid talking about the past, but it’s better 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…’ instead. 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'

Having to answer the same question several times can be frustrating, but repetition will happen. There is little benefit to passing on your frustration to somebody with dementia, and saying ‘I’ve just told you that’ only reminds the person of their condition.

Try this instead:

Try to be polite and as patient as possible. It's important for somebody with dementia to feel they're being listened to and understood.

3. 'Your brother died 10 years ago'

A person living with dementia may forget about a past bereavement or ask for somebody who has passed away. But reminding them of a loved one's death can be painful, even causing them to relive the grief they've already experienced. How carers should respond to this may vary for different circumstances, but it's always good to show sensitivity.

Try this instead:

It may be better to come up with another reason for somebody's absence, while at other times a gentle reminder is appropriate. In the later stages of dementia, trying to remind them that the person has died is unlikely to work and may be best avoided.

Our dementia advisers are here for you.

4. 'What did you do this morning?'

Avoid asking too many open-ended questions, 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. It’s also important that people with dementia continue to make personal choices, but defining the options might be a helpful technique.

Try this instead:

Rather than ‘what would you like to drink?’, you could ask ‘do you want tea or coffee?’ or more simply, ‘do you want a cup of tea?’.

5. 'Do you recognise me?'

It can be distressing when somebody with dementia doesn’t recognise you, but remember that the feeling is mutual. Asking the person if they know who you are can make them feel guilty 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.

6. 'Let’s have a cup of tea now, then after that we can go for nice walk and get lunch in that café you like 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 in loud environments and wait until you have the person’s full attention before you start a conversation.

7. 'Do you need some help with that, love?'

Words like ‘love’, ‘honey’ and ‘dear’ can sometimes be patronising for people living with dementia. This is particularly true if this is not how they were referred to before having dementia. This is sometimes referred to as ‘elderspeak’ and can cause older people to feel infantilised.

Try this instead:

Always remember the person behind the dementia, using their name as often as appropriate. This helps keep their dignity intact and aids concentration too.

Contact our Dementia Connect support line if you would like support from one of our advisers.

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My mom is in the later stages of dementia. She was speaking a little bit about 3 weeks ago then started only babbling. We can’t communicate with her. What does this mean?

My husband will tell my dad with dementia that he doesn’t like it when my dad stands in front of the tv or walks up behind him. This causes my dad to apologize and pout and walk away. What can I do?

We are trying to keep a family member at home with I would say mid stages of Dementia , I.e she still wants to bathe, and dress herself ( with reminders and assistance) We have people staying during the day to assist in getting these things accomplished and make sure she gets at least a couple meals. In her mind helpers are there to visit and go on outings. We can’t get much housework done because she gets upset and won’t allow it. My question is it is getting to the point where she needs someone at night for her safety. And sometimes she does not want the day person present. How do we explain why we are there? It cannot be to help her, she does not think she needs any help. Any suggestions are appreciated. Especially how to bring in the evening/night shift.

Hi there, Kym - thanks for getting in touch.

It sounds like you'd benefit from talking with other people affected by dementia for advice and tips. We have a dedicated online community called Talking Point where you can correspond with others who have been or are currently in similar situations. It's the ideal place to share experiences, advice and offer support. You can browse the conversations in the community, or sign up to become a member: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on… It's free to use, and open day or night.

Alternatively, you can call our Dementia Connect support line on 0333 150 3456 to speak directly with one of our trained dementia advisers. They are here to listen to you, understand your situation and provide you with support. More details about the support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line

We hope this is helpful, Kym.

Alzheimer's Society website team

Hi i was reading your pist , my dad needs 24 hour care living with dementia can i ask where or how you found someone to do that? Was it a cna? Or nurse or just a person

Hi Colleen, we live in a very small community and these are people that have been recommended by others that we know or some of the caregivers we know. None of them are licensed personnel.

In my experience suggesting that the people are there because THEY need help/companship/ a place to stay is a good way of making the situation more palatable.

Hello, my 80 yo mother has late stages Alzheimer's. Up until Aug 23, she was still very clear, driving with monitoring, and able to speak. She had aneurysm surgery and now it's so bad I don't know what to do. She is completely dependent and a 100% different person. She can barely dress herself and when she does it's not the normal dressing.. it's 3 shirts and no pants type thing. She has lived with me for 3 years. What my question is, is, how else can I say "you can't" without using those words.. she is becoming increasingly depressed not being able to just go like she did just a short time ago. She is also leaning to the left terribly and her speech is almost mom existent.. she also is telling (the best she can) family members she doesn't want to live with me and that I'm mean to her.. I am and never would be mean with her.. I love her with all my heart and soul.. is this part of the disease??? I think she thinks I'm mean because I'm the "you can't" girl now.. any advise will be greatly appreciated

Hello Billie,

We're really sorry to hear about your mother, it sounds like you are both going through a difficult time.

We recommend calling our Dementia Connect support line on 0333 150 3456 to speak to one of our trained dementia advisers. They can listen to you and give information, advice and support specific to your mother's situation. You can find more details about the support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line

You might also like to join our online community, Talking Point. Here, carers and other people affected by dementia share their experiences and can provide advice and support to others in similar situations. You can browse the community, or sign up for free here: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…

We hope this helps, Billie.

Alzheimer's Society blog team

Sorry for your situation

It can take a bit of time to rethink how to phrase things but try not to be "you can't" try to praise what she got right maybe even help her think she's helping you. Look at yourself in the mirror when you say "you can't" your loving worry might look unintentionally mean
All of us, most things in life we really need reassurance
"Oooh you got a good set of shirts here, hmm maybe we'll choose some pants too, that's right, good choice. Hmm maybe this shirt, it looks so pretty on you"

You can both make sure you blame the illness not each other
Each time there's difficulty then reset. Make a point of sitting holding hands/ hugging/ whatever she's comfortable with
"Oh, I'm sorry, darling. I am just so worried about keeping you warm with the best clothes, I want to keep you safe, you deserve the best"

You can say with gentle smiles & nods
"I know it's hard" praise her courage or whatever things she felt good about herself for. It's OK to say it's hard for you too with hugs but you love her so much you want to work out how to do the best for her like she does for you

She's so lucky to have you x

Hi,

I am hoping for some help. I’ve not seen my grandparent for over a year due to Covid and also distance, I travel to see her. I understand from family members that their Alzheimer’s is getting worse and I am anxious about seeing them for the first time. I am not sure what to talk about or how I should be around them. I think I’m working myself up but does anybody have any tips that will greatly help ease of conversation? E.g taking photos I have?
Thanks

Hello there, thanks for your comment.

It's understandable to feel anxious if you've not seen your grandparent for a long time. It wasn't clear from your message if they're living at home or in a care home., but we have some information on care home visiting here that you may find helpful either way - particularly the section on 'Your reunion':
https://www.alzheimers.org.uk/get-support/coronavirus/dementia-care-hom…

Your idea of taking along some photos sounds great, and talking about earlier times you've enjoyed together can help keep the conversation cheerful.

If you'd like to talk to somebody for advice before or after your visit, you can call our Dementia Connect support line on 0333 150 3456. There are some more details about the support line here (including opening hours): https://www.alzheimers.org.uk/dementia-connect-support-line

Best wishes,

Alzheimer's Society blog team

Be as you always would, but slower, I care for my father at home as he has brain damage and dementia, if he's having a bad day looks confused I always make sure I call him dad and try to remember that it take about ten seconds for my sentence to sink in, I ask him if I an turn TV or radio off (it's distracting for us bith of we are trying to have a conversation, I ask him about old times, they flow better, enjoy your visit z

I am looking for advice on how to address the future with my father who has Alzheimer's -- early stages to mid now I think. We need him to acknowledge that there will be a need for care in the future, but he does not. He talks about learning to do new things for himself that he cannot learn to do since his ability to stay on task is already quite poor. (e.g. cooking, organising his home.) He is a hoarder, and lives in a house that is highly unsuitable for having dementia in or bringing carers in, e.g. fall dangers, unsanitory bathrooms, generally poor standard of decoration, overwhelmed with his stuff, no proper living room, chairs for guests, etc. The house needs organising and modernising including plumbing, electrics and redecoration. He can easily afford to get this done, but all his life he has done any such work himself. If he acknowledged what the future almost certainly will bring, we could start preparing the home for that time. I'm worried that if he refuses to engage, almost everything will be against what his wishes would have been - i.e. losing his home, losing his independence, spending all of his considerable savings on residential care. When we talk to him about any of this, he does sometimes engage, but never gets to the point where he agrees to anything -- he just says he will do it himself. Then by a couple of days later he has forgotten. Often he does not remember he has had an Alzheimer's diagnosis. He is at the point now where he does need meals preparing by someone regularly. He loses weight when he is on his own, which indicates he's not eating well. He suffers from dizziness and is often apathetioc to the pint of not dressing and just sitting watching TV all day. Does anyone have any advice on how to communicate with him about this?

Hi Jenny,

We're very sorry to hear about your father, this must be a really difficult time for you.

For specific advice on your father's situation, we'd recommend calling our Dementia Connect support line on 0333 150 3456, where you can speak to one of our trained dementia advisers who can offer information and support. More details about the support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line

You might also benefit from joining our online community, Talking Point, where carers and other people affected by dementia can share their experiences and receive peer support. This could be a great place for you to get helpful suggestions from other people who have been in similar situations: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…

We also have some information on understanding denial and lack of insight, which you might find useful. You can read it here: https://www.alzheimers.org.uk/get-support/help-dementia-care/understand…

We hope this helps, Jenny. Please do call our support line when you need advice.

Alzheimer's Society blog team

There is absolutely NOTHING wrong with saying "honey", "dear" or I love you. This is false.

Whoever came up with this ridiculous comment is clearly undereducated and not very compassionate.

It is patronising when used by a person unknown to you. Obviously different with a family member.
It is disrespectful. I remember being annoyed when my audiologist called me lovey. I had never met her before.

If you feel disrespectful at somebody using normalised, accent based tics like "love" -literally the most positive word in the English language- it's an issue with you,not that person. Try learning a bit more about the world and how people speak.

I think the people who say don't use endearments mean well
But
People who are ill are still individuals & I think the blanket definitely don't use endearments is as bad as risking being patronising by using them

Try & find out what the individual likes

But I guarantee the ones being criticised for using endearments are usually the sweet people you want working in care & it is just the icing on the cake if someone tries to check what the individual prefers. Needing care can be a time of vulnerability when that sweetness suddenly feels really reassuring

& I just appreciate anyone who's trying to get it right

Hello, 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

My 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.

That 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.

Beverly 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

Bless you and your husband. You have touched my heart .

You are doing an amazing job, congratulate yourself, you are all he needs. Love conquers all.

Thank 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.

It 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

Joe, 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

Hello 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.

My 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.

I 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.

I 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.

You 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

My 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?

My 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.

Hi 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 .

Thank you 🙏

My 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.

Stephen. 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.

I think it's fab that she enjoyed the idea of the sandwich shops!!

Fiona, 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.

My 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

Hi 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

Why 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.

My 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

The 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.

I 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

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