AIBU to be overwhelmed by mum’s rapid dementia and possible prognosis?

[Settledownnoweasytiger]

My mum is 77 so not young in anyone’s book, and I am 42, so also not young in anyone’s book. By this I mean - this is only to be expected and she was never likely to live forever.

About five months ago my mum started showing personality changes, memory loss and physical coordination issues. Started falling a lot.
Over the last five months we’ve now moved to no short term memory (around five minutes maybe), very little long term memory, not reliably knowing im her daughter or that my children are her grandchildren or that my dad is her husband, unable to get dressed on her own, unable to do things like make a cup of tea, episodes of vomiting, falling continuously, problems with fine and gross motor, unable to hold a conversation entirely now - just rambles and it’s it nonsensical much of the time. Just like fragments of things which make no sense. Loss of language - struggles to remember common words.
Five months ago she was still driving and we were still more or less as normal. Just slight memory loss - repeating herself sometimes or forgetting things occasionally.
She is now entirely unrecognisable as the person she was before.

Last week we went to a private consultation as nothing had happened on the nhs apart from ‘wait for memory clinic’ and every day my mum is losing something else.
It was a neurology appointment and the the consultant thinks it is likely a rare form of rapid degenerative brain disease but would need to do more tests to ascertain which one. She was quite interested as she thinks it is something rare. She wouldn’t be drawn for definite on timescales but did say in all likelihood we are talking months. In some ways I guess this is a blessing.

Even though this news wasn’t really a ‘shock’ I have been barely able to function since. I feel so anxious all the time, I keep crying, I just keep thinking my mum will never go out for lunch with me again - she’ll never choose me a birthday gift or be excited to go and do anything with me and the children. She’ll never really enjoy anything because a lot of her emotional stuff is gone too. I can’t share my children’s achievements with her because it’s now meaningless for her and she’s forgotten in a minute and a half anyway. I wake up in the morning and feel unsure how I’m going to get through the day.

I do understand it’s common and what happens and it’s not tragic, just sad. And that neither of my parents are going to live forever.
I feel like my reaction is OTT and it’s getting on my own nerves. I need to just get a grip but I don’t know how. I’m not choosing to be anxious and sad all the time and I don’t know how to stop. I’m an only child so there are no siblings to share any memories of my childhood with and also I’m supporting my dad as much as I possibly can. I’m worried he is going to have some sort of breakdown.

Is my reaction unreasonable?

Not as an initial shock, no. But you clearly know this is unsustainable longer term and planning needs to replace panic.
Arm yourself with information and support. Information from medical professionals and support from other family members affected by this sort of situation. You are definitely not alone.

So sorry to hear about this OP. Of course you are not being U, you are grieving. Even though your mum is still alive, you are already feeling her loss: the person she used to be is already mostly gone. Of course you are anxious and sad! I'm sorry you have no siblings to share this terrible time with. When my mum went suddenly from apparent good health to a terminal cancer diagnosis - in the gym mid-Dec, home to die in January - I took great comfort in knowing that although it was sad, it wasn't, as you say, tragic like an early death. But it still takes time to grieve.

My dad had vascular dementia and though his decline was slower than your mum's the shock of losing him bit by bit was immense. I initially went through a period where I couldn't see him without crying, my heart was broken.
It's grief even though the person isn't dead.

Sorry to hear this. My mum has long term early onset dementia and there are some good medications now which may help once you get to that stage. We had a really good visit with my mum for Mother’s Day, probably reverting back several years in capacity of conversation, mood, recognition, after some new meds.
It is an awful thing to deal with but you will come to terms with it to some degree.

YANBU you are effectively watching your mum decline and grieving for the person she was.
Hugs 🫂

Totally understandable. You're overwhelmed emotionally. Don't know how to move forward. So small steps.

You need help. So request a social services assessment - both for your Mum and for your Dad as carer, yourself too as carer maybe. By the sounds of things you and your Dad are going to need supporting in caring for your Mum sooner rather than later. Accept whatever they offer - as next time you ask they will need to ramp up the offer. Don't go down the road of making promises you can't keep, eg agreeing never to have your Mum admitted to a care home. There may come a time when a care home is the best option for your Mum, your Dad and you.

Check out the Aged UK website for advice on financials, and others groups such as Alzheimer's Society for local groups. They support those with other forms of dementia linked diagnoses.

Being active in finding a solution helps to ground yourself, even if its checking the internet for ready made meal delivery.

Ask on here - between us all we have so much hard won experience and we're happy to pass this on

I agree with others. You are grieving. I went through the same process with my mother who had vascular dementia. The only 'good' thing about it is, when she actually died, it was a relief rather than a shock and I was already used to her not being 'there'. So imagine your mother had died 5 months ago, how would you be feeling now? Would you think your reaction was OTT? Ofcourse not, and neither is this reaction. I'm very sorry, it is so hard to come to terms with, but you will get there. Be kind to yourself (and your mum and dad).

you are experiencing a loss and it’s hard. I’ve been there.
Hope you can get all the support you can , there’s good advice here.

Gosh, I think you're being really hard on yourself OP. Coming to terms with the loss of a parent from dementia is hard and your mum's rapid decline IS shocking. You're bound to be reeling so please be kind to yourself. You're also feeling the responsibility of supporting your dad through this difficult time, knowing what's to come.

Please go and see your GP and talk about how you're feeling - you need some support too. Talk to other family members and friends too, don't keep it to yourself and struggle on alone.

I'm so sorry you're going through this - you sound like a lovely daughter ❤️ take care of yourself too 💐

Of course you aren't be unreasonable to feel this way, it has been so quick, you have had no time to get accustomed to your mother losing her faculties.

My mother had dementia and deteriorated very slowly, she died ten years after diagnosis. In one way that allowed me to get used to the idea gradually, but in another it was painful watching the slow inevitable decline. I am an only child too and was the only living relative.

I'm glad your mother now been seen by a neurologist. It is unusual to have such a rapid decline with dementia so I hope you can get some answers.

Think about what sort of support would help you and your dad. If your mother can self fund her own care you can go ahead and arrange it yourselves through a care agency of your choice, who will do a needs assessment. If she needs local authority funding, you would need to contact Social Services for a needs assessment.

Oh I’m sorry, that’s unusually quick & I would be very upset too.
I do wonder if your mum has had encephalitis or something like that? As I cared for a lady with encephalitis who had the same symptoms and speed of disease progression; it was devastating to watch.
All 4 of my grandparents had various types of dementia but it was much slower to develop.
Hope you get answers x

This. Been there, it sucks. You learn to deal it, as it’s reality now, that’s just the way it is. I’m sorry op, I lost my mum to it last year, many of us on here know what it’s like.

Same thing happening with my mum. 6 months ago she was driving, last week she moved into a care home. She thinks she’s having a holiday at a hotel. It’s been awful. I still get small glimmers of mum now and then but every day she is declining more rapidly. I had no idea dementia could progress so fast.

I’m sorry you’re going through this OP - it’s the worst of both worlds, they’re no longer here in any meaningful way but still here for caring/worrying about!
what helped me was treating it like work - take a professional attitude to dealing with Drs, carers etc I found I had to separate myself just to keep my own sanity. Best wishes.

Decline can be rapid and sudden. I feel like I’ve been grieving for my own mother for nearly 9 months but she hasn’t yet died. It is quite the emotional roller coaster. A part of your mum has already gone and you will be feeling that loss. You have to pace yourself to a degree - we’ve had rush to bedside crises, small glimpses of possible improvement with the cycle rinsing and repeating.

I just wanted to send you a hug, OP. You've had some good advice from PP.
My mum has been declining from dementia from 2019, it's just awful. At the point where I actually would rather she died, she's not living, just existing.
I really feel for you x

Same with my mother. Lewy Body dementia. Driving to passing away in 6 months. It was hard.

YANBU. my dad is living with dementia. I wept for months and months after the initial diagnosis.

Oh, OP, I’m so sorry. My DM died in December after years of treatment for incurable secondary cancer. I had known for years that it was coming, but it still hit me like a tonne of bricks. Of course you will struggle and find it difficult - it’s a huge, traumatic thing to deal with. Please be kind to yourself.

Has your DM had a brain scan? Only ask because what you
describe with the vomiting etc sounds similar to how my DM presented.

I'm so sorry, Op, just wanted to say that. I can see that other posters here have experience and advice. ❤️❤️

I am so sorry you are in this position. My mum had vascular dementia and so I can understand a little of your feelings. Has she been checked for a urine infection? My mum's condition would worsen at an alarming rate when she had one, I had no idea this could happen. I would also say for you to talk to your mum even if you don't think she will remember. It helped me to have conversations with her even when they were almost totally one sided. Sending hugs

I hear you @Settledownnoweasytiger I'm 65, mother is 89.

Frailty has descendes swiftly. We thought she might have Parkinsons due to loss of balance and tremor. The MRI confirmed a meningioma and blank spaces arising from silent strokes. She has stopped goimg out alone and can't cook any more. Memory not too bad but its loss will be progressive.

Please focus on practical thinhs which include grief counselling for you, apply fkr attendance allowance for your parents and get a social services assessment underway.

It's little consolation but I saw my gran slpwly deteriorate due to alzheimers over 12 to 15 years. It is a blessing to be spared that.

I am almost 36 and it’s my Nan and not mum who’s affected with vascular dementia, incredibly similar to everything you’re saying.
all of your feelings is absolutely everything I’ve gone through the last 3 years . But yours is in an incredibly fast amount of time. No wonder you are struggling to adapt.

the one thing that helped me - no my Nan doesn’t recognise me, she now doesn’t recognise my mum either, she has no idea I have children. BUT, my comfort is she isn’t aware that she doesn’t know this. Does that make sense? She’s in her bubble, she’s happy, she isn’t aware of what she’s lost or missing out on. Doesn’t make it easier for me personally but gives me comfort in that she isn’t yearning or sad about not being able to choose me a birthday or Xmas present again, for example.

also, on the ‘diagnosing what exactly is wrong’ - my Nan also has Lewy bodies OR Alzheimer’s as well as vascular. We could do more tests to find out, we chose not to, the outcome is the same

My mother-in-law went from being able to function to a certain extent to death in 6 months. In the end we were so pleased it happened that way rather than lasting fo years. She couldn't remember who people were ,but if I went out I'd be asked where I'd been. Not even DH got that treatment. She wont remember who people are but may well file them away DH was either her brother or cousin. DD was a cousin etc.i even stood in as mummy a few times.

Its a horrible disease and although we're conditioned to want someone to live as long as possible it's not always the kindest thing for themselves or you.

Please keep sharing things with your mum, it doesn't matter if she doesn't seem to remember, honestly you really never know what is locked in that can't escape.
For instance we didn't think my Grandad was remembering our understanding us anymore but in his last few days he started recalling things that had happened when he was at his worst - such as me passing my driving test (at 43 years old) and my youngest passing at national test in her chosen sport.