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?

I'm so sorry you're going through this. Mum and I were exactly the same ages as you are now when we went through this. I too was an only child. All I can say is that you will get through it. There will be dark times and some very humorous times....I took mum to visit dad in hospital and she thought he was her long dead brother. Then just as we were leaving she said 'Bye bye Nicholas, you know, you look just like my Jimmy (dad), except Jimmy has a bigger nose.' The whole ward cracked up. That was 22 years ago and I still cry at what she went through. It just seemed so unfair. Incidentally, she knew me right to the end and that made me feel special. Baby steps. You'll do it. x

I am so sorry OP. Your response sounds very natural. Just because mental decline is common, that doesn't mean it isn't tragic and terrible.
You will get through the next painful months and in time look back on the lovely person your mum is at heart.

Of course your reaction is not unreasonable. It's perfectly normal in the circumstances. What has happened in a few short months would normally take place over years. You are just processing a most horrible painful scenario, it's too much and too shocking to just take in overnight.

You might consider grief counselling because what's happening is like a death has already happened or is happening

Just be kind to yourself and keep talking to your mum as normal. Your familiar tone will be a comfort to her even if she can't recall what you have said.

not dramatic at all. You are losing a little bit of your mum daily and you are watching it unfold with your own eyes, it’s just affirmed your suspicions that a medical professional has confirmed it and makes it ‘real’ if that makes sense?

Hopefully they have completed a brain scan to rule out serious head injury from a fall or tumour. That is a rapid deterioration and certainly warrants further investigation that is not delayed. Poor you and poor Mum hope you get answers soon. Push for the scan if it hasn't already happened.

Firstly, I want to say how sorry I am that you are losing your mum as you knew her, that is a huge burden for anyone to bear. As others have said you are grieving, just as any of us who have lost a parent have done. Next, you have had some utterly brilliant advice around accepting any help you have been offered, along with social services, I would encourage you to accept any help that friends and family offer to you...have a list of things that people can do for you...even if is as simple as saying... could you make mum and dad a Shepherd's Pie or could you sit with mum so dad can have a long bath or a nap. It will make both them and you feel better.

There was a comment about not making promises you cannot keep, this is really important as you will end up feeling guilty when you absolutely should not. Ask her GP for further sign-posting to other organisations that can give you help and support.

Finally, there will be days when you think you are running on fumes, those are the days to log on here and get some support from us.

Don’t rush yourself. I had a big blow with the Health of one of my dear siblings and it knocked me for six. I became quite depressed for a good 5/6 months and quite suddenly came to terms with it. But until I did I started to cry every time I drove the car by myself. Honestly, you can’t rush this stuff. Your brain needs to come to understand the change.

My Mum was diagnosed with mild cognitive impairment, now waiting for the full dementia diagnosis. It’s heartbreaking. Go easy on yourself, it’s a lot to come to terms with

God that’s horrific. I’m so sorry. Dementia in any form is horrible and a loss of so much of the person you love, but to have it progress so fast is such a shock. I hope you will consider seeing your own GP and asking for a referral for some support or counselling 💐

I am so sorry to hear this, I can’t imagine the shock you must be in. You’ve gone through what I’ve been through over the last six or seven years in just the same number of months.
Do not be hard on yourself and please try and look after yourself.

Please say they treated her for UTIs first?? This level of decline in such a short space of time smacks of some sort of invasive virus, bacteria or tumour. I would have wanted to see her offered a course of broad spectrum antibiotics to rule out the obvious.

The vomiting is the symptom that stands out as not typical in age related cognitive decline. The GP should be on this, has she had a CT scan? Waiting for the memory clinic is fine for typical memory loss but this is clearly not typical. Go back to the GP and request scans asap. If they are a bit reluctant she needs to register with another GP.

GPs are private businesses they are not the NHS, they simply charge the NHS for having NHS patients on the books. Some GPs are genuinely terrible and don’t make referrals they could make because they can’t be arsed or are too busy. This is why people go direct to the NHS via A&E nowadays. Don’t be above doing that.

Keep going back to the GP and getting more answers. My mum had all of those symptoms and it was a brain tumour.

I’m so sorry, OP - so very hard for you all.

My DM’s dementia went on for 15 years, until she died at 97. And no, she was hardly ever happy. Until the final stages, she was so often confused, fretful or anxious about things she couldn’t even name.

A friend’s neighbour had the galloping variety - only 71 IIRC when it started, all, over within about 3 years.

Please don’t take this the wrong way, but If I knew I was going to get it, TBH I’d hope for the latter type. Having seen far too much of dementia (FiL had it too) I really would not want to inflict the long-drawn out type on my family.

You aren’t being unreasonable but remember you’ve had her for maybe 40 to 50 years. My mum died when I was five. It is as I got older that I realised what a devastation it is for the family. Cherish what you’ve had

Wow I could have written this. Also only child. Similar age for me and my mum. It's hard and you want to protect your dad too, or at least that's where I am at. I hope they have set up the POA already? That is helpful. My mum was diagnosed in December after 7months of trying to get to a diagnosis. I cried most of last year, and still get upset but it does calm down, and by that I mean you will adjust in time to the new normal. Although I expect to be in tears in a few weeks time or months. As dementia is always changing. I hope you have support by friends. I find it all very isolating as many friends can't relate until they go through this. X

You are going through a process of prebereavement. Your mother is still alive but for all intents and purposes is leaving you. Life and your family relaionships are changing forever and the toll on you in caring terms is probably going to be substantial. This is huge, it is a tragedy, and of course your feelings aren't OTT. I went through something similar when my father developed dementia. I cried far more at this stage of things than I ever did again. But on the other hand I was able to see his death, when it came, as a release from suffering, as I had done all my grieving by that point. It's natural to be sad about all the things you and your mum won't do together anymore, but you can still show your love through the quality of care you ensure she gets, by protecting her in her vulnerability, and by supporting your dad. I'm so sorry you're going through this.

Your reaction is not at all OTT, it’s entirely normal. Although your Mum is alive, she has completely changed over a very short period of time. She isn’t the woman you knew anymore. Meaningful conversation and meaningful time together has gone. You’re grieving- you’ve lost someone very suddenly. Be kind to yourself in the midst of all this. I’m so sorry this is happening. 💐

Just reading some of the posts about the rapid decline. I have no experience with dementia so don’t know anything about its progression.

But I did see a very sudden cognitive decline in my dad which unfortunately turned out to be tumours. Others have mentioned UTIs- I had assumed that had already been ruled out but perhaps not. I would agree with those suggesting asking the GP for urgent scans in case it’s something other than dementia.

I'm so sorry OP.

It won't console you now because you're in the eye of the storm, but a rapid decline is in my view very much better for both the patient and those caring for them. My own father took around 8 years to die and it was horrific for all of us.

@Settledownnoweasytiger I'm so sorry you're going through this. It's totally understandable that you're feeling shocked and upset. It's the beginnings of the road to processing grief.

My situation is not quite the same, but there are similarities. My mum is only 72, with middle stage dementia that's been gradually progressing over the last few years and it's starting to get much much worse. She's not old, but not young either. We also struggled to get a diagnosis or (any) support.

I'm only 37 and find it hard to explain how hard it is. None of my friends are experiencing this type of loss or anything like this at this stage of their lives.

One other thing I forgot to mention @Settledownnoweasytiger is you have to change your mindset, too. If your mum starts to ask about people who have died, deflect, deflect, deflect. Don't say, "Mum don't you remember they passed 10 years ago," as that will just upset her, say, "Oh, not heard from them for a while, I must reach out and see how they are doing and update you.", then do nothing and it will be forgotten. Your big mission over the coming months is to live in her world and not reality. I promise that it will be a lot less stressful for everyone... you and your dad will become dab hands at distraction.

Don't think you are being unreasonable at all. It's a shock. Please don't brush it under the table as a one of those things either. Not enough people talk about it. I've spent the last year getting my mum a diagnosis, we've been in and out of appointments, she's been sectioned and now is fairly stable on some meds. It's rough and it's generally a lonely road to tread. Mid 70s isn't young but it's not old either

Have they investigated the possibility of Glioblastoma? Please mention this to the team. My dad has this and it was very rapid and had the same symptoms.

The vomiting stands out to me as a red flag for something non dementia related
my dad was slowly unable to chew food due to the glioblastoma so was gagging.

I hope it isn’t this for your mums sake but we were fobbed off with UTI’s and then the memory clinic first.

Sorry had not has