I live with my 89 year old mum and am her registered carer. From what I’ve read and living with her, I’d say her dementia is mild. She was diagnosed with Alzheimers and Vascular Dementia about 2 years ago and has been taking Donepezil so maybe that’s helped. What disturbs me most is that there won’t be much change in her behaviour for ages then she’ll suddenly worsen, as in being really forgetful about events or even who people are or obsessing about something, then she reverts back to how she was before which is mainly repeating herself, forgetting things and talking about the distant past. I can have lucid conversation with her but she does seem to find it hard to follow along and will sometimes answer me talking about something completely different. I do have friends and a few family members who know, but I can feel really alone sometimes with all of it. It’s just so sad. She used to be a primary school teacher and was so organised and together. She was my rock. I thought it would do me good to be part of a community who really understand and also if I need to connect at any time of the day. I can’t be phoning people up at all times of the day and night and anyway, I feel they’re just being polite most of the time asking how she is and how I am. The thing is, once I start talking about it I just can’t stop so I usually just don’t say too much.
@Dani …..Hi, welcome to the forum. I don’t have any experience re dementia but others on the forum do. I’m sure you’ll find this forum a great comfort and place to be able to talk as little or as much as you wish to. I found this forum a lifesaver over the last couple of years. Everyone is so nice on here.
Hi @Dani welcome to the forum. I’m sorry your Mum has dementia, it’s a cruel illness and very hard those caring for someone with it.
The beauty of the forum is that you can post any time and people will answer - some folk are on the forum VERY early in the morning, others during the day and some before they go to bed. It’s good to have your own thread to post questions on and chart your caring journey.
Also check out Roll Call to get to know the ‘regulars’ and chat about your day https://forum.carersuk.org/t/roll-call-october-2025/127850/875
Welcome to the forum. I always like to check, whenever dementia is mentioned, that people understand the benefits system. Entitlement varies depending on age, so can I ask how old mum is? Do you have Power of Attorney for mum, or are you her DWP Appointee?
Hello @Dani and welcome to the forum 
Sorry to learn of your Mum’s diagnosis - I cared for my Mum (Alzheimer’s) for about 7 years until her passing in 2012.
She too was on Donepezil - her GP explained that the drug would slow down the progression of the condition but that there would be “plateaus” when she would seem better for while before going downwards/backwards again.
I found the physical side of caring for her relatively easy (she also had osteoporosis and osteoarthritis) but it was the emotional side of caring that I struggled with. A lot of the time she didn’t recognise me and would tell me that I had to leave as her daughter would be home soon (I lived with her for the last 5 years !) or would tell me she knew my name was Sue but I wasn’t her daughter Sue. Then there were the times she thought I was her Mum (!) insisting I couldn’t be her daughter as she was only 19 - Other times she wanted know where was her Mum and/or Dad - both long, long deceased - it was easier and less stressful (for her) to say they were either “at work” or “on holiday”,
I spent many times crying myself to sleep knowing that I had “lost” my best friend - it’s called ‘Ambiguous Grief’ and I found good advice in a book called “Contented Dementia” by Oliver James which suggests we need to live in their world and not try to make them accept the reality of our world. The Alzheimer’s Society also has a forum (Talking Point”) which is full of useful/sage advice from Carers going on the same journey - worthwhile reading even if you don’t sign up.
Mum eventually moved into residential care when it got to the point that I could no longer cope and ended up in hospital after 6 months having contracted the novo-virus where she passed away after 3 weeks. There are still times when I think “would she have lived longer if I had kept her at home” ?. But I have to remind myself that she was 88 and had had a good life.
I wish you all the best on your journey.
@Dani Welcome to the forum. Very sad to read about your mum. I too know the heartbreak of watching a loved one decline with dementia. My lovely late husband suffered strokes vascular dementia and other health issues. Eventually he was in a nursing home. I had no choice as his consultant wouldn’t allow him home for his safeguarding and mine. In hospital he had the most awful delirium. Phoning me and our family all hours of the night demanding we fetch him. Accusing me of being with another man etc. This was not like my hubby at all. We had been married for over 50years and was a good marriage. Eventually I learned to cope. In the home I would walk away if he was being verbally aggressive. ( Tears flowing). He confabulated lots. I always agreed with what he was saying especially when something nice like he has been in holiday the day before. If it was horrible, like the time he said he had been thrown in a cellar with rats, I blamed his medication, saying he had took it too late or similar and had caused bad dreams. Fortunately he always believed me.
I could go on but won’t. The forum allows us to say as much as we like, does not judge and is very supportive. So rant away, be as emotional as you want.
I’m not on the forum as much these days as now an ex carer
@Dani Welcome to the forum. First of all a BIG hug. I’m really glad you’re reaching out to connect with us. There are lots of empathetic, friendly folks here. You’re not alone. You’ve shared what many of us have experienced and can relate to.
My experience - after a nightmare hospitalisation in 2015 my Dad was diagnosed with Vascular Dementia, he had some weird spaced out episodes that dissipated but then when things calmed he had issues reasoning things out …instead of A+B=C it was a random A+D=Z, he seemed fine on the surface of conversations but underneath Dad had a lot of frustration, emotions and for a doctor who was an extrovert and learnt many languages - ie prided himself on his intellect he had some dark sad moments. These were compounded by heart failure, rheumatoid arthritis and Cancer…Dad passed January 2020. Mum and I pivoted hard to her cancer surgeries, chemo & radiotherapy that year.
@Dani I hear you when you say it’s so hard when your Mum has a sudden step down - these are heartbreaking moments and it can feel like your being torn. I can’t tell you it gets better, in fact you know its going to get worse for you - that’s why Dementia is also called the ‘long goodbye’ and why we feel what’s called ‘Anticipatory grief’ which personally I’ just called straight up grief…I didn’t see that back then though.
Your Mum, like my Dad may get frustrated. I had to change my mindset and expectations - he seemed able but he wasn’t. He lost sense of time and what he was ‘supposed to do next’, Mum and I became his anchors and reference points about when to do things - I can’t tell you how many he times we were asked ‘what am I meant to do next’, or he’d sit in a position at the table not realising it’d been nearly an hour….So we changed our relationship to time…meal times and shower times were our times of day, a scaffolding he could lean on.
We had a very fraught time because of Dad’s other health issues. It sounds like generally you and Mum have a calm routine? Does she need help with dressing, washing?
Some people I know like to record or video conversations with their parents, reminiscing about their childhood or old memories. I used to ask Dad about his childhood - holidays, favourite foods. Nostalgia and good memories are really helpful ways for both of you to feel connected and find some joy amidst the tough emotions..no sliver linings just some real common ground moments that are a relief….open questions, without correcting and sentences may not be complete but being lost in memories is a comfort; being transported to happy times.
dad was good at deflecting the conversation back to those ‘polite’ talkers…the empathetic ones knew to not stay long. The idiot ones stayed too long, wore dad out and then had the gall to say he seemed fine 
FYI Carers UK support: Caring for someone with dementia | Carers UK
Admiral nurses What is an Admiral Nurse and how can they help? - Dementia UK
Sending more hugs
Hi @Dani I totally agree with the others. Dementia is a cruel disease, not only for the person who has been diagnosed with dementia, but for everyone close to that person.
My Mum is 98, and has mild cognitive decline. The past year has been difficult for Mum and I, as we have both had to come to terms with her decline in health (she s also is blind, hard of hearing and has chronic neck pain) and inability to do tasks. Our relationship had declined to such a point that one day she told me she never wanted to see me again and that I did nothing for her. I was devastated. Since then things are much improved. I went on a course “caring for dementia carers” through a Cornish based charity, Promas, and a NHS sleep well course. Both have really helped! I’d urge you to try and find similar courses.
I recently found this article which you might find useful.
If I get dementia, I’d like my family to hang this wish list up on the wall where I live. I want them to remember these things.
1a. Every time you enter the room announce yourself. “Hi Mom - it’s Amanda.”
NEVER ask- Do you know who I am??? That causes anxiety.
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If I get dementia, I want my friends and family to embrace my reality.
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If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
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If I get dementia, don’t argue with me about what is true for me versus what is true for you.
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If I get dementia, and I am not sure who you are, do not take it personally. My timeline is confusing to me.
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If I get dementia, and can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet, and see if I can still feed myself.
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If I get dementia, and I am sad or anxious, hold my hand and listen. Do not tell me that my feelings are unfounded.
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If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
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If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.
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If I get dementia, ask me to tell you a story from my past.
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If I get dementia, and I become agitated, take the time to figure out what is bothering me.
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If I get dementia, treat me the way that you would want to be treated.
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If I get dementia, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.
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If I get dementia, don’t talk about me as if I’m not in the room.
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If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live. With a bus and activities!!
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If I get dementia, and I live in a dementia care community, please visit me often.
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If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.
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If I get dementia, make sure I always have my favorite music playing within earshot.
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If I get dementia, and I like to pick up items and carry them around, help me return those items to their original place.
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If I get dementia, don’t exclude me from parties and family gatherings.
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If I get dementia, know that I still like receiving hugs or handshakes.
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If I get dementia, remember that I am still the person you know and love.”
sending hugs.