Anyone else's mother got dementia

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My dm has had dementia for a few years since pretty much before I had my children and no longer recognises me. I'm finding it all so distressing now because the person she once was has gone and has been replaced by an aggressive woman who frightens my children. I feel so sad that I'll never pick up the phone to hear her on the other end or spend a day out with her and the children like I see other mothers and daughters when I'm out. She lives quite a long way away and I hardly get to see her in any case.

It's difficult to talk to friends about how I feel because none of them have been in a simlar situation. Although they mean well and might say that their nan had it and how awful it was, that's not really the same. They still have their mothers and don't seem to grasp the great big gap in my life. She does come and stay sometimes but it's got much more difficult since she's become so hostile to the children. I know that I must put them first. My dh is very supportive and says that she can come to stay whenever I want but I don't recognise the person she has become, she's not the kind, loving mother that I grew up with.

I don't really know what I want anyone to say because I know she's gone and is never coming back, I just miss her so much.

Hi, I'm so sorry to hear you are going through this, and although I can't really offer much useful advice I just wanted to let you know that you are not alone.

My mum developed early-onset dementia when she was in her late 50s/early 60s. She's now in her late 60s and has been in a care home for a few years. I miss her so much, and can hardly bear to visit her because she is not the mum I knew. She should be in the prime of her retirement years, enjoying her life and her grandchildren after years of hard work, but instead she looks about 20 years older than she is, can't do anything for herself and can't remember me.

Sorry, I'm not sure this is helping you much! Have you contacted the Alzheimer's society? There might be support groups where you are, and if not they do have lots of information that can help you understand it, and reassure you that it might not necessarily happen to you! I eventually went to my GP and had some counselling with the Psychiatric nurse at the practice - it was just really helpful to talk about things or just have a good cry with someone who didn't know me outside of the surgery and who was not judging me.

It is very painful when other people talk about their mothers, and I think the worst thing is that you can't even grieve because she is not dead yet. It's also really hard to deal with those character changes - my mum also became quite aggressive, although not with me and the DCs, more with my dad.

I hope some other posters can give you more positive support. Do you have any brothers or sisters you can talk it through with?

My grandma has alzheimers and although I was only a teenager at the time I can understand what you're saying. It's like she has died but you aren't allowed to grieve because she's still here. I don't know what to say that will help as my experience of it as a teenager will be very different to yours but you could try contacting the Alzheimers Society for information and support.

:(

It's such a cruel illness isn't it. It almost makes you grieve for them long before they have physically left us. I've worked in mental health, and mainly dealing with dementia, since I left school. Although even after so many years experience, I could never begin to imagine how it would feel to be the daughter of a sufferer.

All I can say is cherish every bloody moment with her that you can. She may seem like a complete stranger, but she is still your Mum and I'm sure she still knows this in her own way. Sit with her, keep her mind occupied by talking to her, about anything, memories from long ago - they seem most easily remembered by even the most advanced sufferers. The more occupied somebody with dementia is, the opportunity for their illness to show it's negative sides is massively decreased in my experience. Wishing you both peace x

I think you're right, it's like I've lost her but can't grieve because she hasn't died yet. There don't seem to be very many women with young children who are in this situation,they all seem to have to cope with it when their own children are teenagers.

I've been in contact with the Alzheimer's Society who have been very helpful with information but that doesn't take away the personal loss I suppose.

My mum had early signs of dementia when my youngest ds was a baby. Unfortunately, or perhaps fortunately, she died very suddenly about a year later. She never got to the stage that your mum is at but I work in a care home (I'm a nurse) and I see lots of families struggle to accept that their loved ones have such a cruel and debilitating disease.

I'm afraid that there is not enough help and support for people with dementia and their families because our society does not value elderly people. It is very sad and I feel for you. I miss my mum dreadfully and regret that she never got to see her grandson beyond the age of 2 and he has no memory of her.

I am going through this at the moment with my Nan (who is like my mother as I have been estranged from my mother for years).

I am finding it very hard as my Nan has become very hostile towards me and has developed a religious mania and an obsession with a group of 'religious' people attached to her church who keep telling her things like I am a terrible grandaughter because she can't come and live with me full time (I suffer from a very painful chronic illnesss and Addison's disease and often need help myself). A few months ago I found out that she had started ringing some family members - who live a long way away from us and can't give any real practical help - and telling them that I was 'after her money', though, thankfully they know me well enough to know I am not like that at all. The 'religious' group she is in with believe her though, even though they know she has dementia.

The whole thing is a nightmare and I go from being desperately guilty and sorry for her, to being angry with the misery she is causing because she just won't go to the doctors and focuses all her frustrations and fear on being nasty to me. It doesn't help that she has no contact with either of her children so I don't really have anyone to help me with her.

You have my sympathy OP, it is terrible to see the person you knew and loved replaced by someone it is hard to even like.

I know just what you all mean. My mother developed early onset dementia when I was 21, I moved in with her and cared for her until she needed to go into a care home (for my sanity more than anything else). She was there several years and I would see her as often as I could bear to - it was like walking a tight rope between the guilt of not seeing her, wanting to have a good visit, and also not wanting to go because it was so depressing.

My mum passed away when I was 4 months pregnant with my LO, in March this year. It was devastating, but I felt I had been missing her for so many years already, the actual death was not as hard to deal with as when my dad passed.

That said, I miss her so much, I feel sad she will never know her grand daughter, and I feel cheated out of having a mother. At 32 I am one of the only people in my peer group to have gone though this - most people are older - and I would have been good to have someone to talk to about how I felt. I suppose that would be my suggestion - find someone to talk your feelings though with, someone you can be brutally honest with and not be judged.

My dad has just been diagnosed with dementia at the age of 67. I'm 35 and most of my friends just have a granny or great aunt who died of Alzheimer's. At the moment I cannot really cope with it and feel angry with him for getting this vile disease. Irrational, I know....

My mum is about to go into a care home this week. She has had dementia for about 10 years now. The last year she has deteriorated rapidly.

I have tried to avoid thinking that she is 'gone' and rather try and think that the mum I knew is still there, she's just a bit different. She really is the same person, she just has an illness.

Have you read 'Contented Dementia' by Oliver James? It's very good in helping you cope and communicate with people with dementia.

My mum always enjoyed poetry and even though it seems that she's out of it, reading to her seems to calm her.

My mother was very vibrant, talkative person and now she cannot even remember the words to finish a sentence. But she's still my mum.

I am caring for my Mum, who has recently moved to a flat round the corner as she wasn't coping on her own four hours away from us. Her memory is terrible, can't remember what she did an hour ago but does know me and my family and thankfully is not aggressive.

However, looking after her is becoming a full-time job and I have to admit to finding it draining at the moment. I am fearful of how she will deteriorate and whether I will be able to continue juggling kids and her care.

Like others, I miss my Mum, but am trying to stay positive even when she repeats herself for the thousandth time - have developed ability to make shopping lists in my head whilst appearing engaged in conversation! Just living day to day really.

www.alzheimers-research.org.uk/info/ this is another society along with your local branch of alzheimers helpline to vent !

www.dementiauk.org/what-we-do/admiral-nurses/

these are great specialist nurses

Music does help and reading books on cd.

There is the brain bus introduced by Fiona philips . It has a software program that helps stimulate the brain and calm them. It travels around apparently. Wish they would sell the software.

We nursed Dad through this. I can't tell you how often we used to wish that he would just be Dad again and start bossing us all around, telling us we'd bought rubbish cars, and that we were useless with our money. Then fixing the rubbish cars and lending us a tenner.
I was very lucky - I had three sisters to share this with and being able to recall what he once was like together made it easier to take decisions on the 'what he would have wanted' and 'how he would have wanted it'. What we do regret is that we left it a little too long before accepting that it was time to make the decisions for him. Help the Aged and the Alzheimers Society were two useful sources of info and counselling.
He died in 2008. And now we can just remember him as he was when we were growing up - big, strong, bossy, opinionated. You do manage to put all the bad bits in a box and lock it away eventually.
Although his badger fixation was pretty hard to forget.

Sorry you're going through this. My mum had vascular dementia and gradually withdrew from us. Eventually she went into a wonderful home, fully funded as she was in Scotland. The years before that were very difficult. I lived some distance away and would telephone every day never knowing what I would encounter. Sometimes it was an upbeat ten minute conversation, other times involved an emotionally draining hour or two.

Fortunately she was wonderful with her grandchildren and my children were old enough not to be scared. Tbh they pulled her leg about things she got wrong or was confused about.

It was a relief when circumstances led to her living in the home permanently. I knew she was safe, warm and well fed.

She died two years ago and I still miss her. Being able to visit her, hold her hand and look at old photographs was a blessing, even if she wasn't able to hold a conversation.

Treasure the time you have. Do what you can given your own circumstances.

I used to work in an home for people with dementia,i found it so sad when families came and their parents didn't know them...it really is a nasty illness....the other staff didn't always understand and didn't 'get' why families didn't visit very often....i think i did,'get it',that is,....people with dementia are not the person you once knew and loved...and it's far too hard to let them go.....

Hi
Yes I am going through this too...
I have been thinking of starting a thread on it but haven't been able to work up to it.
I feel exactly like you.
It is so upsetting as my mom was really looking forward to being retired, and now is pretty much unaware of it.
She is deteriorating quite rapidly and is is devastating to see her personality change form the softest, kindest person I ever knew to someone who is so frustrated and also often aggressive.
She doesn't make much sense anymore. She has the most amazing support from my dad and her sister on a day to day basis, but we live quite far from them, so I feel guilty at not being able to help.
I always dreamt about the day that my kids would go and stay with my parents for the weekend, but that won't ever happen. :(

Terribly, terribly sad. DH doesn't understand he says "everyone's parents get older and change"... but it is not the same thing is it?

i have nothing to add....i don't know how i would bear it if it were my Mum....

my granny has dementia also, and the last few months have been especially tough as she has been in hospital after suffering a mini stroke. she wont be coming home, and whilst i know its for her own good as well as for my grandad's sake (he has been her carer since her first stroke over 25 years ago, which also left her physical disabilities) it finally hit me, just how bad she has been getting.
we took her out for her tea last week, and she really looked like she had no idea who we were. i know that the kids amuse her as she smiles and talks to them, but i dont think she really knows who they are, and that makes me really she cant even tell us either, as she finds it difficult to speak too.
i have very few memories of her before she had her stroke but i would give anything to go back.

OP,you have my deepest sympthies-it is very hard watching someone you love turn into someone completely different

Qwerty - I could have written your post. My mum got ill when she was just retiring - my parents had moved house and she had plans for doing up the place, she was great at sewing in her time and was going to make all the curtains herself etc. In the end she just couldn't do it. It is especially cruel when dementia strikes early - just at the time that my sister and I were having babies and hoping for a doting grandma to share things with, she was rapidly deteriorating.

DH's mum is in her 80s and still drives etc, he is sympathetic but really doesn't know how it feels for me.

OhLuckyYou - good to read your post, so sad hey?

I think that I could do to join this thread. My mother was diagnosed 4 years ago with Alzheimer's and has deteriorated since then. Mostly she doesn't know who I am. My children are young and when she sees us she doesn't realise that they are her grandchildren. I feel very alone in having to deal with this whilst own children are so young.

My Dad had dementia and died about 2 and a half years ago. He was 88 then, so at least he had had a good long life. Ds is 9 now, was just 7 when he died, and never really knew him when he was well. It was hard to see him deteriorate like that, and not recognise any of the family. I think he knew who d was whe he was first born, but certainly didn't know who he was by the time he was about 5.

My Mum is now 90 and in a care home near us. She's not too bad, but is now starting to experience short term memory loss, which is hard to cope with.

A lot of my contemporaries have much younger parents (even dh's parents are 20 years younger than mine) so it can be hard to compare circumstances.

SMTB, sorry to hear about your situation. How did your mother cope with seeing your father's deterioration?

A lot of my friends have much younger, working age parents too.

It was quite hard for my Mum, as she was in her 80s at the time, and although she was fit, it was very stressful. I think it was a relief for her in the end when my Dad had to go into a care home (he was there for the last 18 months of his life)

My dad is finding it very hard looking after my mum as she is so confused. I think he's very scared about the future.