My mums declining health - please help me I need some support

[oustedbymymate]

Hello

New to all this and so just need some support and help. Sorry for the outpouring.

I don't want to be too outing but I'll try and explain as best I can.

Mum is under 65 and over 60. Has always been a bit on the 'depressive' side. However recently it's become unmanageable along with a lot of other issues and I need help as to what to do.

She 'cares' for one of her parents and that is obviously a strain as it's been going on a number of years however over the last year she does less and less care and just says she doesn't want to go and wishes that her parent would just die as 'it would be easier' we pay for daily additionally care 3 times a day to call at grandparent flat which is in assisted living. DM refuses to acknowledge that she can step back and we can put more care into place but is insistent on 'controlling' everything but then doesn't want to do anything about it.

DM has depression. We have tried to get her to access services such as IAPT for counselling and she won't. She says it's a waste of time. We have asked her to see GP who prescribed 25mg of sertaline. DM starts and stops medication regularly as 'it's not doing anything' but she doesn't give them change to actually work. Nor has she been back to gp to say it's not working.

Then more recently more things have started to happen. She has muscle weakness. Can't open jars, lift things (she dropped my 1 year old 6 months ago - luckily I was right next to her and caught him but it shook me up and she seemed non plussed about it). She has poor mobility.

Her writing has deteriorated and is really shakey now.

She cannot hear. We have asked her repeatedly to go and get it sorted and even go private as it's just so isolating not being able to hear. She says she is sorted it. It's been going on for over 8 months. Doesn't wear the hearing aids she should.

Cannot follow a conversation. Associated with hearing I'm 90% sure but then it's also seem a lack of understanding or concentration.

Struggles to remember basic words

Forgets the names of the children in our family.

Had a strange walking gait with a foot drop

Doesn't take pride in appearance anymore. Isn't smelly or dirty but rarely wears make up. Doesn't get hair done and it's all limp and lifeless.

Recently has suffered with incontinence but not just a minor leak. A full flood. And then it happened in public and she didn't seem overly upset about it. Just a bit 'oh dear'. I was horrified and my mum of times before would have been mortified. Hasn't taught medical advice for this despite going on for over five weeks.

Doesn't earn well particularly. Is a little underweight.

Lies about what she's been doing.

She is literally a husk of the woman I knew.

She seems to have no joy. No purpose in life.

She doesn't exercise. At all. Doesn't really leave the house besides the obligatory visit to her parent.

She used to bake, read, knit

I have tried so much to help her. Things I have offered and she's declined;
Go to doctors with her
Do online food shop to be delivered at her house
Meal plan
Booking things like swimming for her
Finding a knit and natter club
Finding a local social club for her.
Finding help to support grandparent.

I don't know what to do now and where to turn. I really need help. Who do I contact to help me? How do I get her infront of a GP
With me so that I can be open and honest. About what's going on.

I feel like there must be something else at play. Alzheimer's? Dementia?

I have a young family of my own, work full time and a supportive DH but I just don't know what to do or how to help?!

My dad is younger than mum and still working full time. Mum retired over 5 years ago and took retirement to 'spend time with grandkids' which she doesn't do. Dad is great in lots of way but shit with this and is just burying his head in the sand. And says oh yes I know but doing nothing proactive.

I'm sorry about the essay but I need to write it all down somewhere and try and get some help from somewhere?! Thank you if you've managed to read through all that.

You did push for her to receive help but her GP was a barrier to getting your mum seen sooner. I would seriously consider putting in a complaint about him. He was completely dismissive and refused to consider anything other than depression, even given all the physical symptoms you mentioned.

I hope your mum make a good recovery.

I agree
My Mum started with those symptoms around that age and was diagnosed with Parkinsons

OP i would say it's the complete opposite of you being awful, I'd say you have potentially saved her life. If the tumor didn't develop and kill her, she'd have had an accident. You pushed for treatment and trusted your gut.
I'm furious on your behalf re GP. I'm not the type normally to complain but would be tempted in this instance

Just wanted to chip in to say far from being awful, you've been a great daughter. Really admire your persistence to get your Mum help.
I hope at some point you can reflect on all that you did and give yourself some credit.
I wish your mum a good recovery.

Thank you everyone for your kind words

It's been a hell of a week.

A further update. She is still in intensive care but so far recovery is going well considering she's just had major brain surgery so just praying she continues to be so so strong.

The care at the hospital has been absolutely outstanding.

We will be making a formal complaint to GP in time but more to make sure something like this doesn't happen to others.

Watch out for the #itsnothysteria movement as that's what we're calling it

You did everything you could in the face of medical neglect.
Wishing your mum a speedy recovery.

Further update. They have now discharged her home. Feels quite scary but they are happy with how she is and I guess they are wanting to avoid the risk of infection in hospital etc. She is doing really well.

It's been the toughest week/week and a half of our lives.

I feel like I'm on some strange adrenaline come down and completely overwhelmed and exhausted.

Keeping everything crossed for your mum for a good recovery

Gosh yes do take very very very good care of yourself, you will be so drained by it all. Wish I could come round and cook you a lovely meal and give you a foot rub ❤

It is great news they have discharged her home, although I understand why it feels scary. I hope she continues to recover well, and you'll update again when you have a moment. Take care of yourself.

Thank you for sharing your story - I've just RTWT. You did really well to advocate with the GP for that referral. I'm sure it's given lots of us things to look out for and not be fobbed off as so often happens with elderly or even slightly older people. Hope your DM recovers well

Updating again as it's cathartic in some ways.

We're basically going through hell.

Mum was discharged 5 days post op. Which felt far too soon. She made good progress in the hospital and we've come home and I feel just so un supported. There's been no support from the community at all.

I thought maybe someone might be someone out to check on here or physio or counselling or something.

Mum is having a really difficult time. She is experiencing episode of aggression and severe agitation. It's really horrendous to watch. My step dad isn't coping really he is trying his best but he's never been great in the face of adversity.

I want to be there to take over and support but I can't as I've got two kids under 5 that are off school and nursery. So I can't take them there as it's not safe and I don't want my mum/kids being exposed to extreme agitation and aggression.

My heart breaks. My mum can't help it. It's part of the healing process the hospital has said it 'normal' but by god this is horrendous

I'm so sorry OP.

I had a serious head injury about 20 years ago, and I was discharged quickly from hospital with no support. Fortunately I had a friend who was a medic, she explained the hospital is not remotely interested once they have done the medical intervention and you are effectively on your own. She was able to give me a bit of guidance.

There are two head injury charities which I found gave very helpful info so I'll link to them here. I think the best known is Headway

www.headway.org.uk/about-brain-injury/

but I found these people even more helpful

https://www.brainandspine.org.uk/health-information/booklets/head-injury/?gad_source=1&gclid=CjwKCAiAn9a9BhBtEiwAbKg6fu_G5--HAR_iSVYX7N73WVvxV3qGvKYU7hyjPFMYblMe75o0ofrhkxoCcuUQAvD_BwE

@oustedbymymate that sounds incredibly difficult. Might it be worth ringing her gp and basically demanding support?

How was your relationship before? If its never been good it may help to step back for a bit. Your mum has her partner and you should focus on your own life. Daughters often feel the need to step in as a carer even though sometimes the relationship simply isn't good enough to work. Good luck.

OP has delirium been considered as a cause of the agitation and aggression?

https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/delirium/

Further update. In an and e. They are questioning post steroid psychosis. They have had to sedate her.

2025 has been the worst fucking year so far.

Good grief OP. Glad you’re somewhere she can be helped. Look after yourself.

I'm glad she's being seen in A and E.

Hopefully they’ll be able to help. Take care

That was my immediate thought but I’m not a medic. My Mum started with the same symptoms.

I’m so sorry you’re going through this OP. It’s good that she’s in A&E - hopefully it will lead to answers, treatment and some calm for you.

I'm so sorry @oustedbymymate . But it's good that your mum has gone to A&E and she'll be looked after.
You did incredibly well advocating for her. If it hadn't been for you, what on earth would have happened to her.

I'm enraged by the way her GP dismissed it all as depression, but this is extremely common. I have this issue with GPs myself. Sometimes I think if I had a broken arm, a GP would say it's depression and give me antidepressants. The only times I've had proper investigation and diagnoses has been when I've gone private, but I can't afford to do that all the time.

When my mum had her first heart attack, her GP said it was indigestion and told her to buy peppermints. This is still happening and it's known. How can we campaign? Are there any high profile doctors out there who would raise awareness within their own profession?

@oustedbymymate new to this thread. Nothing but sympathy and empathy for you. It's a very difficult road you're going down at the moment juggling your ongoing concerns for your mother and your own family too.
Just take it one day at a time and vent all you need to.

I've been there, got the t shirt and it's really tough. Talking about it and sharing has helped me enormously.

Further update

Just to be cathartic really.

Mum still in hospital although hopefully has 'turned a corner' just praying I don't curse us by saying it.

We had four more psychotic episodes in hospital aggression violence extreme behaviour. Had to pin her down to sedate her.

Initially hospital treated it as a 'mental health episode' as the person clacking her notes wrote she had brain surgery in 2024 not 2025 aka 2 weeks ago. I went absolutely crazy. It took us 5 days to get infront of a consultant that actually knows anything about the brain.

A week on and mum is making good progress with the right consultant formulating the plans. They have ruled out anything physiological that could have caused this extreme behaviour which makes me think it must be steroid induced psychosis. She is back on a low dose of steroids as there's still some swelling on the brain. I want a plan and how we will manage and outreach support before we even think about discharge.

What an absolute rollercoaster