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 .

Have worked as an art therapist with dementia clients. It's really, really important that you encourage her to use her vocabulary. She will know it's hard. Give her space and time. There is so much you can do. Find out what's out there in the community and take advantage. There may be reading groups, music groups, art groups etc. We don't get 'agitated' in the groups. Lots of patience and a good facilitator makes sense of 'nonsense'. In my limited experience, dementia sufferers know something is 'off' and they enjoy being with people just like them. Hope this helps. It's hard. I know.

Bless you OP ❤️ I lost my mum at 59 and it is very unfair. I don't know much about dementia but please be kind to yourself and be patient with yourself, try to reach out to other people even if it's not dementia related. Think about things that bring you little bits of happiness and brig them into your life, even if it is just a nice m and s meal, buying new pyjamas or think about getting yourself a pet if you're in a position to.

I think grief comes early when you know your loved one will die, so any feelings like anger and remorse etc are totally totally understandable, even though she is still with you.
Sending you a heap of solidarity ❤️ keep posting whenever you need to x

So sorry op, your mum is incredibly young and it is a very cruel disease.

If your mum has been unwell for some time, a diagnosis, whilst devastating and difficult to process, may serve to enable your mum and you to access specialist support which may help to improve her quality of life and support you.

My mother had the same. She had been exhibiting symptoms for a long time but we just thought she was behaving badly as she was such a strong minded person. When we realised something was wrong we had such a fight with the GP to get her a brain scan. I’m terrified of getting it myself as my mothers sister had it too. They told us 2-10 years life expectancy, but I think she had it much longer than we thought as she was gone within 18 months.

there was a lady in the nursing home with her around your mums age and although she wasn’t communicative, she seemed content, she would sit in the garden and wander around happily.

im sorry you are going through this, I remember it vividly how absolutely awful it was to get this news. Sending you a big hug

How old are you, OP? It sounds like you have been acting as your mum's carer for 5-6 years. Who is caring for you?

Also to add, I remember my mother’s fear well, she knew something was very wrong. She said it too me that she was scared. Our relationship was a bit tumultuous but some good came out of it in that we healed a lot of old wounds. Caring for someone you love in this way is the most healing and wonderful thing, although I did grieve for her when she passed, I felt happy for her too that she wasn’t going through it anymore and like we had a peace between us.

Not someone horrible. Some one who is exhausted with caring, frustrated and scared.

Take care of yourself OP. Roles have reversed in your family and you are now the carer rather than being cared for. One of the most important thing I’ve learnt as mother is I must look after myself to be able to look after others. It doesn’t come naturally to me, I was a young carer and it’s just not part of my behaviour pattern.

My grandad has early onset dementia, I think he was about 60 when he was diagnosed. He lived well enough with care at home for about another decade, and then deteriorated rapidly: he was still at home for another 18 months but granny wasn't really coping by that point.

I remember she felt so guilty for getting cross, and all we could do (and all I can do now for you) is remind her that she is human, and that if my grandad had been in a care home they would have done shifts and then not been working anymore. They would have had says off. No one person can take all that burden themselves and it's unsurprising that you have had the odd outburst.

I definitely think it's important to keep her talking as far as she can do, and to keep her brain engaged as far as possible - my grandad deteriorated very rapidly when COVID came and he couldn't have visitors for a period.

All the best OP - you must be exhausted. I would consider contacting one or more of the friends you have drifted away from due to caring for your mum - I know I wouldn't mind at all and would totally understand why you hadn't been around for a while.

this is awful my mum has dementia and is 80 was diagnosed a year ago but has really deteriorated now waiting to go into a home. Please remember to look after your self as wellxx

Thank you so so much

I’m 31 in 4 weeks . Been mum’s carer since I was about 6, my dad left then, she’s always had mental health issues of one type or another and she’s always struggled but over the last couple of years you can see in photos and in her face that she’s changed dramatically . She lost lots of weight and it was little bits to start with then over covid things just plummeted downwards .

I try phoning her in the hospital but she’s not always very interested and doesn’t know my voice always I don’t think, we try to FaceTime but when I spoke to her today she just said she was tired and didn’t want to be there . She’s on lots of (strong) medications .

She doesn’t always recognise photos very well, she was good with video tapes/DVDs when we tried that but didn’t know photos . Couldn’t look at me and connect me to younger photos of me .

Its hurting beyond belief as my dad wasn’t about when we were children, and doesn’t remember my very early childhood well, and now my mum can’t tell me, so it’s just me and my sister . I’m scared . I’ve spent most of my life with mum and I don’t know how to live without her really .

Alzheimer scotland said a while ago when this first started being discussed that I would get used to each gradual deterioration and it wouldn’t be like a cliff edge, but the thought of her being non verbal etc is absolutely terrifying .

Yes mum knew/knows something wrong unfortunately too, I’m not sure if the hospital will tell her in any detail and if she could understand now but she told me a year ago she knew something was wrong, GP said mum had been back and forth to them for four or five years worried about her memory . Trouble is with frontotemporal - from uni lecturers - you usually find they perform fine on cognitive testing and less so on more subtle things . So it wasn’t until mum was so badly off that she couldn’t live alone any more until people realised and started to take notice . I don’t blame her GP, her GP told me she would never a million years have thought it was FTD . It’s just shit . I’m so so sorry for everyone else’s stories too .

I know it’s your brains way of coping but I keep saying to myself, oh it’s just a mistake, I must have misheard, but she remembered about xyz, but they can’t be wrong . Must just be your brains way of dealing with too much bad news .

Hi OP, I went through a very similar experience to you. My mum was diagnosed in her 50s, to be honest initially it was a weird relief as it explained so much that had been going wrong for the previous few years. Then we went through some very very rough times and got pretty desperate.

I strongly, strongly recommend Contented Dementia by Oliver James. His approach is pretty all consuming to implement “properly” and we never quite managed it but to be honest caring for someone with dementia is all consuming and I found the book totally revolutionised my way of thinking about dementia and my relationship/experiences with my mum improved dramatically.

I’m one year older than your mum - it’s a sobering thought. I am so very sorry that you are going through this. It is always a horrible disease but seems so much worse when someone is younger as you think of what could and should have been. Please don’t beat yourself up if you feel you have been short with her or frustrated. It’s a very difficult situation for everyone and I would imagine that you are young. Among my friends it is a common experience to have parents who have dementia but I would imagine that you must feel very isolated. Please don’t be frightened of your perfectly natural feelings and take every opportunity of help and support you are offered.

Hi OP. My dad was diagnosed with FTD at 60. I was 30 so I've been where you are tonight. I still replay the conversation I had with my mum in my head, can see her coming through my front door that night and remember the words we said as she broke the news. I remember pacing my now husband's floor at 3am that night, stepping in the squares of the rug pattern, going round and round in circles and sobbing on the phone to my mum. I don't know when I stopped crying.

Take the time you need to think and digest. Surround yourself with people you love. Don't think too far ahead and don't Google anything. Do what you need to do to get by.

The diagnosis is absolutely devastating but in some ways a relief because now you know what's wrong. It'll give you a bit of understanding when your mum has a challenging moment and you'll find strength and patience knowing it's not her but the disease. You'll also now be able to get the support you need which, for my family, was lifesaving.

Spending time with my dad was increasingly difficult as he changed so rapidly but you just keep going. You'll find things that your mum loves to do and sharing them with her will bring you little bits of joy amongst all the heartache and sadness. She'll do things because of the disease but you'll smile or laugh and for a moment you'll forget. In years to come, those memories will make you smile.

There are some fantastic charities that can offer support - whether as a group or 121 or phone helpline. There will likely be a "young carers" service for people like you with a young parent living with dementia. It's therapeutic to offload to someone that gets it without judgement. They're all a really good outlet for the million emotions you'll feel. Shouting and anger are absolutely normal and nobody would blame you so don't feel guilty!

If you need someone to talk to tonight, Alzheimer's Society and Alzheimer Scotland (not sure where you are) both operate a helpline and they're just there to talk or listen.

I know there are no words anyone can say. Just don't be too harsh on yourself. The best thing you can do is to look after yourself so that you're able to be there for your mum.

It's impossible to think what the future looks like where you are right now. My dad has missed a lot of milestones in just a few years - engagements, weddings, forever home renovations (he'd have been involved in every part of it) and babies (oh my god he'd have loved being a grandpa). I can't say it gets easier (in all honesty it's shit) but you get better at coping and you'll find a strength you don't even know you have.

My mum was diagnosed with frontal temporal lobe young onset dementia aged 55, at the time I was 26 and my brother was 19 and still at school.

It’s now 10 years later and my mum is still here, she has deteriorated but it being cared for in her home by a team of carers.

Its been rollercoaster, there have been really difficult days, sad days but also lots of happy moments over those ten years.

There is the young dementia network and also the Rare Dementia support group at UCL.
www.ucl.ac.uk/drc/rare-dementia-support

I would suggest getting a power of attorney sorted asap if your mum still has capacity, you can apply for this online plus you can also claim for council tax exemption which will help financially.

if you have any questions, feel free to send me a message.

Hope you are ok, sending you my thoughts.

Just sending a virtual hug OP , so sorry your mum is not well. 💐🤗

The power of attorney is good advice, we did this as soon as my mother was diagnosed, definitely look into it if you haven’t already.

@Blueemeraldagain @Supercalesomething @Foodie68 (and everyone else of course) thank you so so so much, it helps enormously to realsie I’m not the first to be going through this horrible horrible situation .

I’m so so sorry so many others have been through this too .

I’ve had an inkling for a few years but they kept saying it was mental health, mum had dozens of specialist appointments where they just said ‘mental health’ when clearly not .

The hospital apologised to us for missing it, when she went in for assessments a few weeks ago .

It’s fairly advanced dementia they think, she’s not consistently recognising me anymore, it’s all just shit .

Unfortunately by the time we realised how bad things were - about Christmas time - she’d long since lost capacity and so her brothers are going to become her legal guardians . They’re in the process of trying to get that sorted just now . I’m hoping the diagnosis will speed that up .

I slept for two spells of about three-hour hours last night, then wide awake this morning at 5.30 . Going to try and sleep again, I just want to block it all out . Family have told me to ask GP for a sedative or something .

I’ve got to try and tell my sister today, she’s got autism and learning disability and I won’t even know where to start or what to say to her .

My own GP’s ringing in about two hours time and mum’s GP hopefully call me too, I’m more desperate to speak to her as I trust her . I’ve got family fairly close by that my granny was going to contact even to see if I could spend the weekend with them . It’s just horrible .

I keep going over and over and over the last few years in my head and thinking I should have done this, that and the next thing and we missed opportunities to do things together and now we never will again, I had severe MH problems a couple of years ago (largely due to all of this) and we didn’t go for walks as much as we could have . Now I’d give anything to go for a walk with mum as she was before .

@tomissmymum I'm pleased you got some sleep OP. It will feel like you're living in a blur right now.

Definitely don't feel guilty. We don't know but we think my dad was able to disguise what was going on for years - apparently not uncommon for FTD because early symptoms are behavioural. All of his symptoms could be explained away - stress, depression, existing medication, diet. The doctors also repeatedly missed it and sent him away.

Almost everyone that we encountered as a result of my dad's diagnosis were really really lovely so you'll no doubt find yourself surrounded by some fantastic people, some of them are real life angels (as much as you'd wish you didn't need to meet them at all).

It's cruel and unfair to be in your situation so young. It's absolutely true what they say about grieving for someone and the life that should have been from the point of diagnosis. It's difficult not to get caught up in that. A lot of the dementia services (GP, consultant, charities, link workers, befriending/buddies, day centres etc) are there for you and your family as much as your mum. They'll do what they can to ease the pressure, make sure you're okay and that you maintain some form of normality. Ask for what you need. If that's medication from the GP to help you get through the next couple of days or weeks or time off work then ask.

Hoping today goes as well as it can do for you.

So sorry. My mum was diagnosed with early onset dementia. A rare type of FTD. For years before I knew something was wrong, but never suspected dementia.
Subtle changes at first. More selfish, less caring, less pleasant, less engaged. By the time she had the tests her cognitive performance was starting to drop, but we were years in by then.
Do PM me if you want to chat.
I found it hard to get anyone to understand what it was like. Even people who had experienced dementia in older relatives didn’t get what FTD was like, and how difficult it was.

This has been our experience with Mum, she stopped contacting my sister, or talking to her - when I phoned mum seemed almost disinterested or just used the same sort of ‘stock’ phrases each time, it was unnerving but I thought she was just anxious and/or depressed . GP seemed to think the same . She went through cognitive testing twice and had a brain CT 2-3 years ago and that all came back as fairly normal, but even as recent as February she went to the psychiatrist and they were adamant it was ‘pseudo dementia’.

I don’t know what if anything they will tell mum . She wouldn’t understand even if she was told .

I spoke to my sister this morning and told her, she was very upset initially but calmed down by end of the call a bit, her carer’s going to take her out for a coffee but I’m not anticipating an easy few days for them at all, sister turns her upset into anger very quickly .

Uni spoke to me a fair bit on the phone this morning trying to sort out various housing issues and seem to be getting somewhere now so that’s positive at least .

Do tou live with your mum, and does she own her home?

Are you happy for her brothers to be the ones who have control over her affairs? You are her next of kin. Are they likely to over-ride you? Are you confident that you'll be happy with their decision making and their control over your mum's finances and property (if there is any)?

I'm so sorry that you're going through this. You have been remarkable to have cared for her long as you have. Please don't beat yourself up about the occasional flash of anger. Caring for someone like your mum is hugely stressful.

My friend suffered this disease. It was totally unexpected, she was highly intelligent and had no apparent previous mental health problems ( a bit spiky, but….).

all I want to say is, please don’t blame yourself for not realising what this was, especially since your poor Mum seems to have had a constellation of MH problems. Try not to blame the professionals, either, it’s thankfully very rare. To be brutally frank, it’s not like some diseases, where an early diagnosis can make a huge difference to survival or even cure. My friend was extremely well off, they could and did have access to every form of private medical care. It made virtually no difference, a few weeks earlier, possibly, for diagnosis. Nine, really, for treatment.

I’m sorry that you are having to face this without a great deal of personal support. Hopefully that will also improve now the situation is clearer. I will be thinking of you in the next few months, with love.

This is sensible advice. Legally you are next of kin and having your uncles managing your Mum’s care and affairs might seem simpler now but could also cause problems along the way, so give yourself space and time to think about what you want. You having control with them as back up for help, support and advice might be better for you.

You having control with them as back up for help, support and advice might be better for you.

Yep. Unsurprisingly I agree with that. At the moment it must just feel like a relief that other people are stepping in to relieve what you perceive as a stressful role in the future. But there is so much potential for really upsetting differences of opinion, and you being powerless, that of its possible, I suggest that you think again. Your uncles can still be a great source of support, without being the ones who have legal control over your mums care and finances.

I’m so sorry, I really don’t have any words of wisdom but didn’t want to read and leave.