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Dementia diagnosis for Mum, now what?

(53 Posts)
SecondhandRose Thu 25-May-23 16:48:56

Been to a Geriatric appointment at the hospital for Mum. They did lots of tests. She has failed the cognitive test pretty badly. I know she is forgetting things but she didn't even know the year. They are referring her for a ct scan and to the falls clinic. She was very quiet on the drive home, didn't mention the tests. I feel knocked for six. Wasnt expecting it. Dementia is such a horrible word. What happens next please? I am part way through applying for Attendance Allowance which I can complete after we get the hospital letter.

Hithere Thu 25-May-23 16:54:26

Sorry to hear the terrible diagnosis

At least it is confirmed and a social worker can help?

Start lining up a plan of care that is realistic and sustainable - do not fall in the trap of unsafe and dangerous demand from your mother

Your health also matters, as much as hers - stress, time demands, etc

Witzend Thu 25-May-23 17:02:21

I’m so sorry, SecondhandRose, I do know how hard this can be.

Having been through it all twice (mother and FiL) one thing I’d advise is joining the Alzheimer’s Society Talking Point forum, for carers of people with dementia.
For several years it was something of a lifeline for me.

Whatever you’re going through, someone will have been there. There aren’t always (or often) any easy answers, but you’ll get the benefit of other people’s experience - plus it’s a safe place to offload/let off steam to other people who know exactly what it’s like.

People who haven’t lived with dementia hardly ever do, but often think they do, and all too often like to tell you what you ought to be doing. 🤬. Ignore them!

You may well be aware of this already, but one thing we only learned by experience, is not to correct a person with dementia when they tell you something that you know isn’t true. To them it is, so unless it’s critically important, just go along with it - this can avoid a lot of unnecessary stress.
Good luck.

welbeck Thu 25-May-23 17:12:01

yes, and avoid pointing out that someone has died.
it's rarely necessary and causes repeated pain or confusion.
best thing is to sound as if you are listening, and then gently turn the conversation.
also asking questions, even unimportant, chatty ones can be stressful.
it's so common in everyday life that we don't realise how much of our conversation is made up of questions.
some people with dementia find it difficult to follow a conversation, and it makes them feel put on the spot to be asked a question, so they tend to withdraw, go quiet.
all the best.

tickingbird Thu 25-May-23 17:14:33

I’ve lived through this with my own Mum and Witzend gives sound advice especially re correcting when they tell you things you know aren’t right. As it progresses they often talk about home (their childhood home) and their parents, especially Mum. It used to break my heart when my mother couldn’t understand why her own Mum wasn’t coming to see her and take her home. I used to get annoyed when my brother used to tell her to stop being silly. Do contact the Alzheimer’s society as you will have questions as time goes by.

Good luck flowers

BlueBelle Thu 25-May-23 17:33:55

I lived through it with my Nan who I looked after and then my Mum it’s horrible truely horrible but there is a lot more help now
I totally agree with others go along with what she says don’t argue or correct and remember she may be aware to some extent and frightened and upset
Look and accept as much help as possible Alzheimer’s society was very helpful for me and remember some stages of Alzheimer’s can go on a long time before the next stage down

She may well be offered tablets to delay things my friend ( and bridesmaid from many years ago ) was on tablets for about ten years and it kept her stable and calm if somewhat dulled
Good luck

Whiff Thu 25-May-23 17:41:21

SecondhandRose if you are caring for your mom apply for careers allowance. Your local council should have a falls unit and they will come out and access what your mom needs things like extra handrails inside and out ,bedrail to help you mom in and out of bed etc. Sorry to say but you are on a hard path. My mom had cancer and dementia. My mom died long before her body did . So while your mom still know's who she and who you are make sure her will is in order. Also get both powers of attorney in place ready for when you need to take over . If your mom has any difficulties with money you should consider having her bank accounts etc in your name as well as hers. I don't know how old your mom is but my mom's dementia started about 4 years before her body died. It was just simple things like forgetting where she put things . The last 18 months she lived with me as she forgot to take her tablets and I was being call out at all hours of the day and night and when I got there she was fine and didn't remember calling me. I don't drive and have health problems. So it was easier and she agree to live with me only if I promised not to sell her house until she died. She died in 2017 aged 90. I couldn't put my mom in a home . I knew to many who had and there parents where covered in bed sores . I am proud to say my mom didn't have a sore on her body I made sure she didn't.

District and community nurses can also supply equipment like pressure mattress,commode even though my toilet was close to my mom's room it got to much for her to walk so the commode was easier as it was by the bed . If you look after your mom yourself you have be prepared to do things for her as you would a toddler. Wiping her bottom etc. As the dementia took hold mom forgot how to wash her face. I took a basin of warm water with simple shower gel in it and flannel and while mom could still do things I talked her through how to do things. It was important she could still things . And she used to laugh especially cleaning her teeth as she would swallow the toothpaste and we had to start again . She used to like looking at old photos and could remember who was in the older ones but she soon forgot and it was to upsetting for her. Mom forgot who she was ,where she was and who I was she thought I was her mom.

Now the hardest part I had to face my mom became violent the last 4 months of her life . Someone said it was abuse on another thread but dementia violence isn't abuse. It's fear . Fear of where she was ,who she was and more importantly who I was. This was very hard to bear. But she was my mom I couldn't put her in a home. She would be fine have a nap and attack me. I was more worried about hurting her so used to hold her tight wrapped in the duvet until it was over.

You have to ask yourself what you can cope with . Looking back I don't know how I coped on my own but she was my mom and she would have hated what she became . This will sound awful but I used to hope she had died in her sleep when I went in every morning.

Get in touch with the dementia society they will help you. I didn't do it and wish I had.

Watching a parent lose who they are is hard and very stressful but only you know what you can cope with. So you have some hard decisions to make and while you mom is still your mom ask what she wants . But get things sorted as soon as possible as there is no telling how long she will still be your mom .

If this has helped you I am glad but there is no point in sugar coating dementia as there is no cure . Hopefully there may be some medication that can help but I don't know what is available nowadays .

SecondhandRose Thu 25-May-23 17:47:30

Thank you. We have power of attorney, she is in sheltered housing, a ground floor flat which is really lovely. Carers Allowance says 35 hours a week. She doesnt need that yet so I am just applying for Attendance Allowance. She is in the first stages so I am really hoping some meds will help. She also has heart problems. She is 92. In some ways I hope her heart gives out before dementia progresses.

kittylester Thu 25-May-23 17:51:56

Hopefully you will get to know which sort of dementia it is. There is no medication currently for Vascular dementia but there are treatments that help to slow Alzheimer's.

Witzend gives good advice about contacting the Alzheimer's Society and talking to a Dementia Support Worker. The Talking Point Forum is very good.

In lots of areas, there are Carer Learning Courses available. They are very worthwhile too. The Alzheimer's Society will tell you about those too.

Your mum will be entitled to a reduction in council tax. She will need to have a diagnosis and be eligible for Attendance Allowance. It is available through the council.

Try not to worry, people can have years of happy life after a diagnosis.

There are lots of Memory Cafes around where you can take your Mum and meet other Carers for mutual support.

Distraction is a key tool and, as others have said, try not to correct but try to connect with what your mum is saying.

I volunteer for the Dementia Service at AgeUk helping to deliver Carer Learning courses - please pm me if I can help.

Septimia Thu 25-May-23 17:52:21

Just as each person is an individual, so dementia affects each person differently. Consequently getting as much advice as you can from as many people as possible is likely to be helpful in covering the things you have to cope with.

As has been said, arguing with a person with dementia is a waste of time and only distresses both them and you. If you find a topic (or situation) makes your mother agitated, gently change the subject or steer her away from what is causing the problem.

And do try to maintain a sense of humour. When we were caring for my FiL several things happened that were really quite funny. Of course, we weren't laughing at him, but at the situation. Sometime he saw the funny side as well - such joy to be gained from sharing a laugh.

Primrose53 Thu 25-May-23 17:55:16

Sorry to hear your news. My Mum was diagnosed at 92 and lived to nearly 97. She was on medication to slow it down and I believe it did. She was never aggressive or nasty but used to get very low (which is totally not her)and confused and anxious so it was a case of distracting her or playing some of her favourite music.

She was obsessed with going to the toilet and would literally get off the loo, sit in her chair and say “I must just nip to the loo”. I would remind her that she had just been but she would not believe me and off she went again. Each time she was in there about 20 minutes, lifting her clothes, trying to go, rearranging clothes, washing hands etc. so she was absolutely exhausting herself. It was very sad to witness.

We were still able to have a laugh together, she enjoyed us having meals together and I wrote down her memories and typed them up and when she was upset the staff read them to her and she was her happy self again!

She was also obsessed with anything paper …. Notepaper, newspaper, paper tissues and paper towels. No idea why, but she hoarded it all in her handbag.

I spent Monday afternoon with a lady who lost her husband to dementia the same time as I lost Mum, during the pandemic in 2020. We both agreed that once you get the diagnosis there is no help at all …. Not here anyway. She was given the number of Admiral Nurses and rang them and they took months to return her call. They asked her how they could help her and she said what she really wanted was for someone to sit with him for an hour now and then so she could pop to the shops but the nurse said they don’t do that.
I used to take my Mum to a dementia support group once a week which was nice and she enjoyed it but, again, once she passed away nobody ever contacted me.

You could try Carers UK site. That is people in a similar position. A great book to read is The Little Girl In The Radiator by Martin Slevin. True story of a son’s journey through dementia with his Mum. It is sad, happy, emotional, funny and a great read!!

Calipso Thu 25-May-23 18:01:41

Witzend & Septimia are spot on.
You are feeling shocked right now OP but the more you find out about dementia the more understanding you will have. I remember helping my Dad in the bathroom one morning and he was trying to brush his teeth. He'd forgotten he had dentures and they were jiggling up and down - we had such a laugh about it together.

welbeck Thu 25-May-23 18:03:53

singing for the brain groups might be useful.
often music can soothe or engage.

AskAlice Thu 25-May-23 18:05:15

I wish I had known about the Alzheimer's Society when I, along with my brothers and sister, were jointly caring for my dear Dad. We had moved him into a small bungalow near to all of us and had carers going in twice a day, but also one of us visited him every day. The hardest thing for me was that we were flying by the seat of our pants...trying my best but not knowing the best way to treat him when he was at his most forgetful and asking whether I remembered his childhood home, for example. And also dealing with the times when he was more lucid and was upset at his situation.

I would agree with Witzend and others who have suggested the Alzheimer's Society as a valuable resource, and also my Dad was prescribed Aricept which I do believe slowed the progression of the worst symptoms for a few years.

Sending you very best wishes, I do feel for you...

Primrose53 Thu 25-May-23 18:12:00

@ Whiff. I agree with most of your post apart from the bit about care homes. There are some fantastic homes out there (as well as bad ones) and my Mum was in one for the last 3 years of her life. I visited every other day, sat with her in the lovely garden, stayed for lunch, took her out in the wheelchair etc. I think some people imagine they go in a home and are deserted but that is far from the truth. My friend’s parents were both in there too and we all used to have a great laugh together.

I looked after Mum in her home for 14 years and had her at my home from Fri to Mon every weekend. I gave up work to care for her. When she was having repeated falls (the last one kept her 9 weeks in hospital) and she had forgotten how to use the cooker and microwave and even how to operate her recliner she was not safe at home. I looked at 14 homes before I found the right one, sold her house and she had to pay nearly £1,000 a week to stay there but on reflection it was her money and nobody could have looked after her better then they did.

I am sure nobody takes the decision to place a loved one in care - I certainly didn’t but she could no longer manage stairs and by then I didn’t have a spare room anyway.

I knew an old lady who had alzheimers and her son said he would never put his Mum in a home but he only visited her once a fortnight and the rest of the time she was filthy, never bathed, all her clothes were covered in food, she never saw a soul as she wouldn’t let neighbours in and she lived on sandwiches. I know which I would rather have for my Mum!!

granny'sbuttons Thu 25-May-23 19:43:58

Primrose53 is completely right. At some point in the future, unless your mum dies from something else, you will reach a point when you cannot cope. This is not a reflection on you. As our neurologist told me, those trained to care with people with dementia do a much better job than a family member who not only has no training but is also overwhelmed by the awfulness of this truly dreadful disease. I had reached this point with my lovely husband who went from being an intelligent, generous, an avid reader to someone who could no longer read, write, feed himself (amongst other upsetting things) He died before he went into a home but I had found one and that would have been the next step imminently. However, please don’t be too depressed there is plenty of time to enjoy each others company. It doesn’t get this bad that quickly. If and when she shouts at you remember ‘It’s not you secondhand Rose …. She’s in there somewhere’. A quote to give some comfort.

kittylester Thu 25-May-23 19:50:48

Cor, how positive is this thread!!

Septimia Fri 26-May-23 10:46:43

I've just read about the Herbert Protocol, especially useful if the person with dementia tends to wander. Worth looking up the details for future reference, perhaps.

silverlining48 Fri 26-May-23 11:55:48

A lot if helpful infirmation to take in. When my mother was diagnosed in her 70 s we got no further help from the gp/hospital, which I hope might be better now ( but rather doubt it sadly).
Do get in touch with Alzheimers society.they have many free and very helpful leaflets dealing with both practical and emotional situations as well as people on the phone to talk to. They also have day care/local meetings which gives the carer a much needed break.
Although I realised my mum had dementia it was still a shock to get the eventual diagnosis, so take time fir yourself to get used to the idea, and remember that however things progress and however difficult it might get, that she will always be your mum. Its a cruel disease. flowers

seadragon Fri 26-May-23 14:31:11

Sally Magnusson wrote an excellent book - Where Memories Go - about helping look after her mum when she was diagnosed with dementia. She found music was a great help and has set up an organisation - Playlist - to help people make Playlistsof their own or for others.

Pammie1 Sun 28-May-23 11:20:34


Sorry to hear the terrible diagnosis

At least it is confirmed and a social worker can help?

Start lining up a plan of care that is realistic and sustainable - do not fall in the trap of unsafe and dangerous demand from your mother

Your health also matters, as much as hers - stress, time demands, etc

Whilst I agree that a proper plan of care is essential, it also has to be remembered that the diagnosis doesn’t mean loss of capacity, so for it to be effective (and legal) it has to be arranged with the involvement and agreement of the person themselves.

vintageclassics Sun 28-May-23 11:24:06

My Father was diagnosed with Vascular dementia - he was given meds to help slow the progress although I have no idea whether it actually had any effect. We made the most of the time he had - memory books helped with pictures of all the family labelled - memories of his childhood, his career, my Mum (who pre-deceased him) us and his grandchild - it gave something to focus on. Get all the help you can from dementia societies, GP's, friends and family. Learn distraction techniques rather than try to correct your Mum when she says black is white. Music is something my Dad loved and old favourites certainly soothed him when he was confused. It's a very hard thing to deal with but absolutely make the most of your time with your Mum and make new and wonderful memories whilst you can

JdotJ Sun 28-May-23 11:29:40


Been to a Geriatric appointment at the hospital for Mum. They did lots of tests. She has failed the cognitive test pretty badly. I know she is forgetting things but she didn't even know the year. They are referring her for a ct scan and to the falls clinic. She was very quiet on the drive home, didn't mention the tests. I feel knocked for six. Wasnt expecting it. Dementia is such a horrible word. What happens next please? I am part way through applying for Attendance Allowance which I can complete after we get the hospital letter.

Sorry to hear this. I gave up work in 2016 to care for my mum, who had been diagnosed with Alzheimer's 18 months previously
It's a minefield going through everything from diagnosis to day to day living for those living with dementia.
advice I will give is to apply for the higher rate attendance allowance straight away for your mum". As she, inevitably declines (sorry), it's a faff to reapply for the higher rate. If she lives alone she doesn't have to pay council tax, and if with someone else, she will get a reduction, also apply for a BlueBadge for her.

Flakesdayout Sun 28-May-23 11:31:00

My mum had vascular dementia and I can understand fully how you feel. Even when I knew things were not quite right I did not want to acknowledge it and would find excuses for her strange behaviours. It wasnt until she accused her gardener of taking all of her things and I had to call the Police and it was the officer who suggested that something may not be quite right. Then her neighbour was accused of stealing her food from the fridge and I had the horrible task of asking for her house key back . She was such a lovely neighbour and I had to lie. That became a way of life. "love lies" they are called. I became an expert. My mum was looking for her Dad and I had to say he had gone fishing or was away with his friends. She always had lots of dogs in her garden (which was impossible as the garden was secure). I had to get a chain on her gate with a safety lock as she was found wandering looking for her 'home'. The lie I had to tell for that was so that people could not get in, not that she couldnt get out. I felt so bad especially when she would ask her neighbour to let her out. Things went missing in the home and I would find them hidden.
Anyway I got Powers of Attorney in place and Carers came in 3 times a day (that is another story) her GP was brilliant. There are so many stories I could tell which are funny now but at the time were quite taxing, worrying and downright horrible.
She eventually went into a care home after being found on the floor and I wish I had done this before, but it was a social worker who suggested she stay at home, in familiar surroundings with a care package. The care home were lovely and my mum started to smile again and have people around her. It was then a nice day out to visit her and see how her hair was brushed and groomed properly, her nails were polished and although she sometimes had the wrong clothes on I knew she was looked after. Unfortunately she caught a chest infection and that was her decline.
I found alot of information on Talking Point at the Alzheimer's Association.
SHR try not to worry although the disease is a decline people can still live with full lives, it just a big change.
I wish you good luck.
Sorry I have waffled a bit

Hilarybee Sun 28-May-23 11:41:10

Very useful advice wellbeck thank you.
My mum’s 92 and in a care home Sh has moderate dementia (mixed). I can have reasonable conversation with her some days and other days she’s virtually mute.
I struggle to make conversation with her as she stays in her room, doesn’t watch tv or listen to the radio or read. I do ask questions to try to chat but will ease off