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.

Hi again @oustedbymymate
I just read your update.

Unfortunately your mother cannot engage with planning anything if, as suspected, she has Parkinsonian dementia (or any kind of dementia).

You say you feel she ‘doesn’t want to get better’. The reality is, no matter what doctor she sees, she is very unlikely to get better. But it would be helpful to get a diagnosis so that you all know what you are dealing with.

It may seem as if she is being awkward, and lying, but she probably is no longer in touch with reality. She may well genuinely believe she drinks 3 litres of water, and if so there is no point arguing with her. She will be impervious to logic.

I am mentioning these points not to be negative, but because you may find it easier to deal with if you realise there is no point in disputing 'facts' with her, or trying to plan her week, it will just exhaust you even further. Her illness makes her very resistant to ‘help’, because she simply cannot engage with it. It is sad about your nan, but your mum simply cannot cope.

Have you established what the wait is for the neurology appointment?

Thanks @catofglory it's trying to work out what the reality is.

Doctors said referral will be 'months and months'. Helpful.

I feel like I need to put some boundaries in place for my own sanity but what does this look like? I can't just leave my mum to rot. I want to help but I don't know how.

We could have 20+ years of this.

@candycane222

Thank you for your reply.

Have sat down with dad and told him categorically these are things he needs to do to support. He has started to step up.

He leaves for work at 6.30am. He rings her at 9am every day to make sure she is up and dressed.

He has been out walking with her on weekends and encouraging her into the garden.

He has been cooking tea and ringing at lunch to make sure she has eaten.

So we are seeing some improvements there.

That does sound like my mum who has early onset Parkinsons. And you are right, you could have 20 years plus of this, so you need help now to plan and get support for you, her and your Dad.
https://www.parkinsons.org.uk/ will help inform you and your Dad, which can only help. He will have to step up and care for her, or access services for her. You can't be doing 90 min round trips when he lives with her.

That's good. Hopefully you aren't still going to be run into the ground managing your dad!

Hello.

I thought would update as I often find it helpful when people update posts.

The GP was adamant mum had depression. We were adamant she didn't and pushed for MRI referral.

This came through last week and she had an MRI on Sunday. By Monday she was admitted to the hospital with a massive brain tumour. By Friday she's had it operated on to be removed and is now in intensive care recovering. So not depression at all.

The team at the hospital have been incredible.

One thing we have learnt is if the symptoms aren't right for your or you have changes about you regardless of symptoms
Please push for more investigations.

I have also recently learnt that men are more likely to diagnosed with heart attacks and brain tumours quicker as when women present with similar symptoms it's passed off as 'hormones' or 'depression' or 'menopause'.

I'm also so sad angry and guilty that we didn't spot a problem sooner. All the changes were so gradual but reading back I feel like a fool and I should have done something sooner

God reading these bank I've been awful to my mum and she literally has a tumour the size of a tennis ball in her brain and not been able to help it!!

The tumour is not your fault. You did your best to get her medical help. Her symptoms were dismissed by a medical professional. You did what you could at the time.

You sound like a very caring daughter who did her best. Without you supporting her it sounds as though this would have gone undiagnosed for a lot longer.

Gosh, what an update. Your poor mum. I hope her recovery goes well.

Poor you too, how stressful this has been. You've done an amazing job advocating for her in the face of a lot of apathy. (I'd seriously consider complaining about her GP.)

Bloody hell OP, you and your mum have been through the ringer. Don't beat yourself up - doctors are the people who are meant to spot these things, not us! I would have assumed a brain tumour would've meant severe headaches, not the other symptoms so much.

Hope you get your old mum back eventually, take care

Flicking heck you did everything you could please don’t be hard on yourself but focus on now and I hope your mum makes a recovery with support in place. Geez how oftern are women dismissed as hormones makes me so so angry.

I'm so sorry to hear your update, but also so pleased that your mum finally got a diagnosis and has now been treated.

You did your best to get help for her, but the GPs you saw completely let you and your mum down. It should have been was very obvious to them that there was a problem and they refused to take it seriously. (We had a similar issue many years ago when my mother very clearly had breast cancer and the GP refused to acknowledge it - it took multiple visits to get her referred.)

I hope your mum makes a good recovery, please let us know how she gets on.

Wow @oustedbymymate you have been through the mill.

Sending 💐 your way. You have done everything you can and don't blame yourself for what has happened. Your Mum got the care she needed and wouldn't have if you hadn't been there to support her.

Take time for yourself now. And keep us updated.

You have not been 'awful' to your mum at all.
It's the GP who should be feeling guilty, not you.
Sending all good wishes to you and your mum

It is absolutely not your fault, you tried everything you reasonably could. But if you have the energy I would formally complain about that GP (obviously not top priority right now). I do sincerely hope that your DM recovers fully. Thinking of you.

Sweetheart you’ve done your absolute best for your mum and have nothing to feel bad about. You were both badly let down by a dismissive GP who saw a middle aged woman and quite frankly couldn’t be bothered to do anything about it.

My mum went backwards and forwards to her GP for four years with obvious signs of Parkinson’s and was repeatedly fobbed off with ‘stress and anxiety’. She was finally referred for further testing when a locum GP saw her and was concerned.

I’m pleased your mum finally got a diagnosis and I hope she has a swift recovery. Look after yourself.

I’m so sorry to hear this. Years ago we had similar. My mum had depression and a drink problem and various symptoms were blamed on those factors. She was abroad and walking funny and had a brain tumor diagnosed. Her GP felt terrible but I didn’t blame her or others. I hope your mum gets the treatment she needs.

Omg OP I'm so sorry - I said that GP was letting you down, didn't I, but bloody hell 😠😠😠😠. You really fought for your Mum, you got that referral in the teeth of the GPs indifference. I bet that GP is incredibly grateful to you now, and if not they sodding well should be. There aren't enough flowers on the internet for you and your whole family but here are a few 💐💐💐💐💐💐💐💐💐💐💐💐💐

I've just been reading through your posts from the start. You've been absolutely amazing and thoughtful regarding your mum. The GP should be ashamed of himself. I work in the NHS so am behind my colleagues with the troubled system they have to work in, but this is appalling (the GP not taking notice of your concerns and detailed description of issues). I'm so glad you at least now know what was wrong and I hope life will be better for you mum once recovered from the op. But it shouldn't have got this far.

Please take care of yourself too - you're in a difficult position with work, young children and also parent/ grandparent issues. Thinking of you x

Don't feel bad. You were adamant and pushed for MRI referral. This is what found the real problem. You did the right thing.

The sad truth is that the NHS is barely functioning and you need to be pushy/assertive often to get proper care. Terrifying and favours middle classes, but there it is. If you had not been able to advocate for her, the outcome might have been different.

Hope she feels much better soon. Thanks for this thread, I'm new to the elder parents care situation and it's really helpful to think through scenarios like this.

@oustedbymymate

You are an amazing daughter and your parents are very fortunate to have you. You didn't fail your mum, the medical professionals failed her, but thankfully, due to your tenacity, your mum finally got a diagnosis and has had surgery.

If she didn't have you, the outcome could have been far worse.

Look after yourself 💐

You've not been awful to your mum at all. You have been there, pushing with the doctors to get the referral which is what led to her actually being treated for the issue she has. You have done all of this whilst caring for your own DC and working AND done it from a distance. You have pushed your dad into stepping up to take more care of his wife.

I hope your mum recovers well from her surgery and any further treatment. Thank goodness she had you and you didn't just accept the GP's diagnosis. Please do write to your Surgery Manager and ensure they know how wrong their diagnosis was so that another person seeking help who may not have someone like you to advocate for them isn't left with inappropriate treatment.

Stop it, and stop it now.

If you’d known about the tumour and been unsympathetic that would be cruel. You did not know. None of you could have had any idea. Yes, with hindsight and Dr Google you can make it fit but you could do that with any diagnosis.

Take time to come to terms with the awful shock you’ve all had, and look forward to better times with your DMum.