Feel broken and desensitised after only 3 years - is it normal?

[NotTheMrMenAgain]

I love DM - she’s always loved me and done her best in sometimes trying circumstances. We used to have fun and laugh so much together, but everything has been altered utterly since the death of DF four years ago and DM’s subsequent diagnosis of secondary metastatic cancer.

It’s been 3 years of brutal surgeries, rebuilding of pelvis twice, radiotherapy etc. There’s been a cycle of her mobility failing to the point of her being bedridden and screaming in agony, then a major operation, then a slow recovery and a period of stability - until the situation deteriorates again.

Now she’s officially in palliative care, nothing else can be done surgically. Cancer currently seems stable and we have no idea of timescale - consultant has been saying things like “If you respond well to X treatment then I don’t think you’ll die within the next few months” each time DM has queried it for the past 18 months or so.

In recent months there have been more frequent falls, bouts of confusion etc, and a question mark over possible vascular dementia - waiting for an MRI of her brain to see if there are signs of ‘mini-strokes’. DGM had vascular dementia and my Uncle (DM’s brother) was recently diagnosed - it doesn’t run in families as such, but the underlying factors that make you more prone to it do. And I recognise some of the signs - DM keeps being confused about how to use her TV and remotes, she can’t use her mobile phone reliably, becomes muddled about dates of appointments etc.

I have been dreading her cancer worsening and the repeat of the awful screaming times, where she begged me to finish her off to end her suffering - but I didn’t, because there was surgery and options. This time there will be no surgery and no positive options. But now I’m hoping that the cancer kills her quickly, before she becomes as demented and wretched as DGM was near the end.

I’m lucky that I live only a 20 minute or so drive away, but the weight of being the sole carer has slowly crushed me. I have a young teen DC who has handled things wonderfully - especially since my marriage exploded three and half years ago when I discovered the multiple mistresses of the ex. I have a sibling who lives hundreds of miles away and to be honest the most helpful thing he can do is what he always does - stay well away - as he is not a pleasant person. I have an utterly lovely, supportive boyfriend (Man friend? Gentleman caller? Object of my affection? Feels wrong to say “boyfriend” at my age!) But I haven’t been coping at all well lately and feel like such a failure.

It’s only been 3 years of helping/caring/supporting, which is nothing in real terms and I would have hoped to have been more resilient - but it’s just slowly ground me down and seems to have eroded away some of the concern and empathy I should have. I fee almost numb at times. When I have to drive across in the middle of the night and call an ambulance now I don’t panic or rush around - I sort of just resolutely plod on and deal with what’s in front of me, like a robot.

I do love DM, but it feels like I actually lost my mom 4 years ago when DF died suddenly in her arms - she was understandably so traumatised and changed a lot. Then the illness came and little by little our relationship became a transactional one, where she needs me to take her to appointments, shopping and do ‘jobs’ - but it feels like it will never be enough, before I’ve finished one job she’s talking about the next. I could spend all day, every day at her house and it wouldn’t be enough.

Yes, DM is very ill and on borrowed time, but she can be bloody difficult. Her tactics of emotional blackmail stopped having an impact on me, I think when the numbness set in. So now when she tells me she feels neglected or gets angry because I refuse to redecorate her entire house (when she has plenty of money to pay a professional) I just laugh and say “don’t be daft!” But i am tired of it - I feel like a personal assistant, not a daughter.

Recently I had a bit of a blip and ended up at the doctors because I felt like I couldn’t go on as things were. I have a different type of antidepressant, which I think is helping, and HRT patches to start soon (if my next bloody period ever turns up) so hopefully will feel more able to deal with things soon.

Today I have DC off school sick with a virus which I also have. I really should go round to check on DM (like I did at 11pm last night) because her phone is going straight to voicemail (last night she just didn’t answer for hours) BUT I truthfully feel like I would actually rather curl up in a ball and die than go back over to that house one more time.

Have I just run out of caring, to the point where I simply don’t give a shit? Logically I know that DM hasn’t charged her phone and it’s out of power - but a tiny part of my brain is thinking “what if she’s had an accident?!” Her fall alarm goes to a monitored 24 hour call centre and hasn’t been activated, so it’s unlikely she’s had a fall. She’s probably mixed brandy with meds and slept the day away. But I’m not going over - I’m taking some Night Nurse and going to bed. She won’t have carers in, there’s no point as she has a large, very elderly dog (who probably hasn’t got much longer left to be honest) and many of the carers refuse to set foot in the house.

Am I broken? Is it normal to get to this point or is there something wrong with me? I feel like a horrible person.

I'm so sorry @NotTheMrMenAgain , being a carer to an aging parent is bloody hard. You do get to a point where you shut down a bit because it's that or total overload. Usually hoping that someone's parent has a quick death sounds terrible but in your case it would be a mercy for you both.
The worst part for me was being utterly torn between wanting my own life back and dreading the loss of my DM, the end came far quicker than I expected but after I was very sad but very relieved- there's no shame in admitting it, cancer and dementia are vile diseases. I really hope you and your DM will find peace

So sorry to hear what you are going through. Please try to be kind to yourself and to treat yourself. All your feelings are valid x

You sound human. We are expected to manage so much now. I am facing the elderly parent rollercoaster again having had a few years reprieve and my resilience is zero. I just want to emigrate. I too love them but the relationship is not what it was due to dependency.
You sound like you need a break but as I know the only break you get is after they have passed away.

Acknowledge your limitations and accept them. Can you fit a camera in her house. Lots of tech devices available now?

I could've written exactly the same, other than the details. I had to take my DM to A&E last night, we've had so many trips and so many weeks I've had derailed, I really recognise the thing about being numb and not rushing around anymore.. My DM also won't have carers and I'm not filling in gaps for things that she could get sorted some other way, but refuses to. I ended up with cancer myself, and still was looking after her during the treatment. It's grim, you don't want them to die on the one hand, but on the other you can't carry on like this, there's just no positive way out. No other advice other than you are not alone!

Sympathy OP.
I wish there was more consideration given to the extraordinary medical measures taken to keep old people going and the inevitable stress it puts on their carers.
Years ago you got old, ill, then died. Now we get old, ill, and live another 10 years…often at their daughters expense sadly.

I work in a carers team and I see a lot of carer burnout like this. It's not your fault, and you're right to put your boundaries in place with her. Ask your local authority for a carers assessment, so you can talk things through. It sounds like things will move on with the situation soon. Lots of cared for refuse paid carers but are happy for family to do it all

It’s not “just 3 years”. It’s forever when you’re in the middle of it. No respite and no one else who hadn’t been through it gets it. I’m so sorry. You can’t do it all forever, it wears you down until you break.
I would refer to social services, citing carer breakdown.

The numbness is self-protection - when my OH died of a slow and miserable neurodegenerative disease I was on automatic pilot a lot of the time. If I had stopped to think too hard about the man he had been - brain like a planet, highly musical - I would have gone under.

Don't feel bad about it all - don't heap guilt or blame on yourself - these situations are hell and you have to function. Make sure you are having fun and going out and doing things you enjoy.

I second everything everyone has said. It’s just horrible. Installing Ring doorbells and cameras at my mum’s recently has helped quite a bit.

@NotTheMrMenAgain sending huge sympathies. You are not horrible, but at the risk of being broken.
plenty of sympathy and solidarity on the long running cockroach cafe threads.
Please seek support- please enlist Macmillan, gp, palliative care team, adult social care team- you cannot do this alone. Your Dc, partner and YOU deserve to be happy.

Don't blame yourself for this. Or feel guilty (although you will). This is a product of people living longer but not more healthy lives. Less family support or community around. Life is busier.
I experienced this for years with a long distance parent. I still got calls in the middle of the night but all I could do was chat and try and calm them down on the phone. Eventually they went into a care home and although I lived hours away I still had to make the trip one be every other month (alternating with DB) which took up a whole weekend plus annual leave day and I felt exhausted. More frequently when it was end of life care.
I look back and realise the stress and sense of duty took over and I didn't feel the love that I feel now they have gone.

It's really tough and you need to take care of yourself in all this. Ring door bell, a 'Komp' video phone for dementia, try and get some carers in perhaps an evening / bedtime call to help her settle. Ask for more help from social services. Maybe see if there is a good hospice that can provide treatment at home or else some inpatient respite?

I just want to send you the most massive hug and say I totally hear you xxx

Sometimes the bleakness of it all is utterly overwhelming and it feels so relentless.

I'm finding posting here invaluable for both practical advice and emotional support - sometimes venting really helps.

Three years is a long time. In fact I think any length of time juggling trauma is a long time and it takes a toll.

I wish you the very best and hope that you can get real life support to try and,ease it all somehow x

Sending much, much love xxx

OP, I have spent most of today crying for my mother, who died last month. In this moment, I would give anything to have all the stress of caring back, if I could have her here for one hour.
But
That's purely how I feel in this moment. When I look back through my diary, the reality was that I was immersed in all that you're feeling. All the exhaustion; all the numbness; all the longing for a respite. And I only did it for 9 months.
To echo what a previous poster said - you're not mad or bad; you're human. You're doing an incredible job for her. You can continue to do an incredible job for her, by setting boundaries that protect yourself and hence her. The expectations on carers are unprecedented and unreasonable - previously, people wouldn't have lived this long.
Aside from my pontification - get the camera. It saved me so many panicked dashes around the house when mum wasn't answering her phone because it was stashed down the back of the sofa.

Thank you all so much for taking the time to reply - your kind words and empathy have made me cry a bit and feel less alone. I suppose, like so much in life, you don’t really ‘get it’ until you’ve lived experience.

Those who’ve mentioned installing a camera - a kindly paramedic suggested it at one point and DM smiled sweetly and nodded along. When I mentioned it post-that-particular-crisis, she told me where she was going to shove it if I attempted to put ‘surveillance’ in her house 🤦🏼‍♀️

I feel a bit better today and more steady, so thank you all again.

Just a message to say I think 3 years is an incredibly long time. Please do ask for a carer's assessment.

I do think the fact that your mum clearly doesn't want surveillance is in a way a good thing - you will end up never ever able to switch off at all.

Get that HRT patch on, you need all the hormones going to cope with that lot.

Thank you for writing it all down, it leaves you numb after awhile, doesn't it.

I'm not a medical professional, get over to the MN meno board & check out the Newson centre. You could easily do a couple of cycles of estrogen before you get a grip of where your period is and then add the progesterone in.

Your DM is not accepting that her "choices" - no camera, no carer etc - are coming at your expense. The daughter who she loves and who loves her. Your DM doesn't sound emotionally frail so I'd tell her straight. She's keeping her perception of being independent, entirely at the cost of your physical and emotional wellbeing.
And then I'd simply override her wishes I'm afraid. If she wants you to be there to support and love her then things - many things - have to change. Currently she's leaching your energy and that isn't sustainable. I'm sorry if this sounds horrible!

I agree with @anythinginapinch . I had to have several difficult conversations with my mum before she lost capacity, as she became less and less aware of the impact on me, the only person she would accept to do anything for her. Even though her own mum had been exactly the same, and it wore mum into the ground looking after her.(Even though I was actually around then and was also allowed to help). I said that we are all getting older and I have to look after myself and have the odd day “off” or even go away very occasionally for a few days and she can either accept someone else popping in or have no help at all. She accepted with poor grace but actually now adores the person that pops in. And I’ve had the ring doorbells and camera installed now without telling her that I get alerts (this is after loss of capacity). She just thinks they are normal doorbells.
Carers quite frequently become ill and die before the cared for person, Due to self neglect I guess. Do look after yourself

Maybe it would help to remind yourself that you do have agency in this. You aren’t powerless. You can choose to just walk away, at any time. The consequences would be hard to live with, but it is an option that is open to you. No one is holding a gun to your head, there is no legal requirement for you to do all this, no one is forcing you. Maybe have a think about why you seem to feel that you don’t have a choice.

Somewhere between doing everything and doing nothing is where you get to set your boundaries.

does your mum have capacity? If so, then she clearly is making choices: to not have carers, to live in a house that she can’t maintain, to have a big dog, to not use any aids or safety devices, to keep you at her beck and call. Why does she get to make all the choices, and your only choice seems to be to accommodate them? it doesn’t have to be that way.

I also agree with @anythinginapinch !
It seems that the key thing here is to have firm boundaries right from the start, mostly we can only see this with hindsight 😫

it’s very hard - and three years is along time. look after yourself and stop the guilt. 🙂

Come and join us on this thread. Your feelings are normal.

https://www.mumsnet.com/talk/elderly_parents/4967638-so-bloody-exhausted-waiting-for-someone-to-die-2

I have been caring for DH for only a year and feel like this. Desensitised is a good way of putting it. Just plodding along, permanently knackered, feeling in limbo.

Look after yourself op - it's really hard being the carer. It's so normal to get to the point of just having enough

Through my work I'm often in contact with the recently bereaved and so often they have a sense of relief, and feel so guilty for feeling like that! It's so tiring physically and mentally doing what you are doing. I hope for your sake there's a peaceful end and she slips away without too much pain, it's all we can really hope for at the end.