Mum has confirmed dementia - she’s only 56

[tomissmymum]

Feel like my entire floor has fallen out from under me . She’s only 56 .

They said it’s conclusive from her scans . They don’t know how long she has left if it’s months or years .

She will only continue to deteriorate though, that is certain .

I’m sitting on bathroom floor not knowing what to do or where to go or who to talk to . I haven’t got anyone near me that I can go and see .

Her GP surgery said her GP is going to try to ring me before she goes home for the night .

My family were saying to ring NHS24 to ask for a sleeping tablet or something .

I don’t know what to do .

I'm so very sorry OP. Do you have anyone you can phone? X

Im so sorry to hear this but your mum could have a lot of life in her yet - dont despair now.

look up wendy mitchell - she was diagnosed with early onset dementia a few years ago and has written two books about her experiences. She also does a regular blog.

i found reading about how dementia affected her very interesting and helpful - although i lost my dad to this over 20 years ago and wish i had this information then. I also found the alzheimers society very useful.

i wish you and your mum all the best going forward.

I’ve spoken to my granny and my uncle . I don’t have many close friends to talk to, caring for mum for six months kind of isolated me away from everyone .

I don’t know what to do . She will never see me marry or have children, I don’t know if she’ll even see me graduate uni .

Thank you

she’s in hospital just now and they’re saying she will need to go into a secure care home soon for safety, she’s had symptoms for 5 or 6 years .

im absolutely crushed and I just want one more conversation with her where I know she understands me, or knows totally who I am, or a proper cuddle .

I kept kidding myself that she was going to get better . That some miracle would happen . How stupid am I .

and I got angry at her when she made mistakes sometimes, I shouted at her once a few weeks ago when she had changed pyjamas 12 times in one hour, what kind of horrible person would shout at someone with dementia

Sounds like you are already caring for your mum - what sort of behaviours does she have which have led to the diagnosis? The good thing about her being diagnosed is that this should help you get treatment for her and carers to help in the home when/if this becomes necessary.

there is a lot of information out there to help you deal with this - can the rest of the family help you at all?

I'm so sorry.

I went through this with my Grandma and I can't tell you it will be okay because there will be moments where it's far from it. Right now, you are reeling and it can't be made better.

However, there will be bright moments, quiet moments amongst the hard ones. Every person is different but my Grandma had years not months and the low moments were so very hard but I also witnessed the best of humanity at times.

Take a couple of days and then please ask about support for you. There is some out there and building up some networks will help you through it.

And MN never sleeps and there's nothing you can't say on here.

Again, I'm so sorry.

I'm so sorry

There is a dementia topic (under the health topic) on mumsnet which you may find helpful, lots of people in similar situation. It is such a horrible disease.

You must be utterly emotionally, mentally and physically exhausted

Please be kind to yourself and grieve for the Mum she was, the relationship you had. Let them find her a good secure place she can move into.

Sorry - cross posted. Looks like youve been coping with this for sometime - im so sorry. But at least you are going to get some help now. DO NOT beat yourself up about shouting at her. I found it easier to deal with my dad after diagnosis as it was obvious then he couldn't help his behaviour.

you sound like a lovely daughter. Accept all the help which is offered and remember that your mum still loves you but may not be able to show it any more. Its not her it is the illness.

That is heartbreaking. Please don't beat yourself up about the pyjamas - you are in a very difficult situation at the moment.

I'm not sure how bad your mum is, or if they will give her drugs but they can help slow the deterioration. She would be 'herself' for some time yet.

Make the most of her while you can. ♥️♥️

Oh op I’m so sorry. It’s a cruel disease. My mum has dementia. She’s 77 , so older than yours obviously.

Please go easy on yourself. You are doing a great job. We’re only human. I have got cross with my Mum too. It’s incredibly wearing. You can only do your best 💐

I am so sorry OP. My mother had dementia but much later in life. Your Mum having symptoms at 50 is really shocking, and tragic for her and all of you. Do you know yet what type of dementia she has ? Different dementias present and progress in different ways, and there are societies that will help and advise you depending on what the issue is.
I would try and talk to your mum about anything and everything while you can. Try not to focus solely on what is ahead, but just on what she can do now. She will probably have days when she is better than others, make the most of those.
Look after yourself, as this is a huge shock.

OP I feel for you and have been where you are. Hang in there and try to take it a day at a time. Thinking of you and sending strength.

How terrible sad. Please don't be mad at yourself for shouting at her. You sound like a lovely caring daughter. It's just an extremely sad situation. 56 so young.

🌸🌸🌸🌸🌸

It is such a cruel disease.

You have made sure your Mum is receiving the right support, so please be proud of yourself for that.

Please also reach out to friends for some support.

Maybe also ask your GP for some counselling?

You have, and are doing, your Mum proud. Keep posting here if it helps.

It’s frontotemporal they’ve said . I knew enough from working with the consultant previously that it would be something like that, I knew they were preparing me for bad news the last time we spoke, but it hurts like hell . Every single part of me hurts .

My GP’s ringing me at half 8 tomorrow morning thankfully .

I can’t get over the fact that she’s never going to get better again . I’ve been caring for her so long and compensating for difficulties that it was missed for several years.

Its a horrible, horrible disease .

So sorry. Early onset dementia is so cruel.
On a practical note, if she still has mental capacity then you should get Power of Attorneys sorted immediately. If not, you may wish to get the ball rolling on deputyships (which take a lot longer as they have to go through court). This will allow you or other loved ones to help her manage her finances and make important decisions about her care/medical treatment.

I’m so very very sorry you’re facing this. My mum was diagnosed with early overt Alzheimer’s at 57

*early onset

Oh how devastating, I'm so sorry. Just scream, cry, throw dishes in the sink and rage if you need to. And Mumsnet is always open at any time for handholds and comfort.

I am just so sorry. I don't have any words of wisdom but wanted to post to add to the voices wishing you and your mum love

So so sorry to hear this. Your Mum is so young. I can’t imagine what you are going through.

I'm sorry op. My dad got diagnosed 6 weeks ago. He's now in a care home as he deteriorated rapidly. I'm still shocked, in a brain fog and disbelief tbh at how quick its happened. Its all just shit

So sorry op, I remember your previous posts
when she was more agitated. You've been so dedicated caring for her, you need time
to process the news

This is so sad, it’s an awful disease in the very old but at 56 that’s just cruel. How
old are you OP?