Failing at caring

[Conversation16]

I have provided care on a daily basis for my mum for about 5 years. She has dementia, but has been moderately independent with me going in to support her to get up, do meds, and orientate her. She also has some daytime support with a meal at lunchtime.
A week ago she slipped off the bed (I think that's what happened - she doesn't remember, and she was on the floor when I arrived). She was well checked out by an intitial response team who helped her up, and then by the ambulance service. Both felt that she was OK, to stay at home, which we were both very pleased about - I have no wish for her to be in hospital, it would be confusing and frightening for her, I think.
Since then, her needs have increased to the point that I have moved into her flat (sleeping on the floor), and can barely be out of her eyeline without her anxiety becoming unmanageable. She isn't sleeping at all at night - is pacing, very distressed. She knows something has changed and asks repeatedly what has happened to her. During the day she sleeps for periods of time. I am managing to work from her flat , but a lot of the work I do is quite intense calls, and I am frequently interrupted by her needing reassurance. I am self employed, single, with a mortgage. I can't not work.
My brother lives several hours away. In theory, he's very supportive. When I first said, several days ago, that she needed far more care, he arranged to come up next week. Over the last couple of days I have tried to be really honest with him about how hard it is. He knows I have had no sleep for 36 hours. I have just had a message from him to say he will be coming 24 hours later than arranged because his wife wants him to walk the dog on Tuesday morning.

I don't think I can sustain what I'm doing. I can buy in some more bits of care but so much of what my mum needs is orientation and reassurance which is tricky for people who don't know her to give. But there is no way I can continue to provide an adequate standard of care with no sleep and plummeting mood (I have a history of depression - I am terrified of depression, and by the fact that I am so tearful and negative and stuck at the moment in response to this situation).
If I don't keep this up, it will be my failure, in my eyes, but also in hers and in my brothers. What do I do?

Aw Sweetheart, you cannot do this alone.

I was in the same position with my mother. I was a separated parent with two children in tow and a sister who lived at the other end of the country.

I am surprised the ambulance call didn't result in a referral to adult social services.
This is what you need to do, possibly via her GP.
Is it possible to get carers in?
We stated with carers twice a day, increasing to 4x. My mother was incontinent and bed ridded in the end (while at her home) My father who had been her main carer fell ill and ended up in hospital (passing away months later)
I could not carry on working (no chance of working from home) & care for my children. She had to go in a home as it was not sustainable.

Funding wise if she has actual money in bank accounts this will be self funded until £24k is left. If she has her own home this will have to fund her care. This will not be immediate but will be in the contract of the care home to be sold at a later date.
My mother paid in the region on £90 for care in the home before she passed.

If there no funds then the council will cover the costs.

It is a long, complicated and painful road even getting to this point.
You cannot do this alone. Fuck what your brother thinks (sorry to be harsh) unless he is willing to uproot and chip in with daily care.
There will probably be local charities in your area who will be able to help and advise you through this process. I found them invaluable as it was a learning curve for me, with so much information that is not readily available (you only know when you know)

Good luck and PLEASE look after yourself, again you cannot do this alone.
Please feel free to PM me if you need.
Sending love and strength x

You are absolutely, 100% NOT failing. You have uprooted your life and are giving much more than a lot of people would - give yourself some credit, it sounds like you have been doing an amazing job.
You have to look after yourself as well, though - so if possible, I would use as much time as you can whilst your brother is with your mum to catch up with your rest, take some time out, and have a look into what support might be available longer term- PP seemed to have lots of good information and suggestions. Best of luck 💐

If your mum needs this level of supervision she needs to be in a care home. Try talking to social services as your first point of call so they can do an assessment. It takes time.

• £90,000 (sorry typo) This was the cost of the care home for just over 18 months

The cost of in home care 4x per day was about £1,900 per month. x

This op.

Your mum now needs to be somewhere with 24 hour care. For both you and hers safety.

You have not failed. I used to be a carer and would walk into so many houses to find exhausted family members trying to do it all while still working and raising their own children. Everyone was exhausted, stressed and distressed.

Please look into care homes for your mum.

I would also now look at care homes.

You have not failed at all but you will fail yourself if you do not help you now. You need to put on your own oxygen mask before helping others.

Carer burnout is a real issue and you have reached that particular point. Time for you to hand the reins over to someone else and become her daughter again rather than her carer.

Thank you for your really kind an informative responses. I know that I am in a fog of tiredness at the moment, and not thinking very rationally. This isn't about me not failing, is it? It's about her and me both being as OK as we can be.
I am going to take a few hours off work and make some calls.

Correct, it's not about what you do or have done right or wrong. It's about the profession of a long slow disease, and you're at the next stage of it now. That's it.

You are one woman, doing the work that is supposed to be done on a 24 hour rotation by a whole staff of nurses, cooks, cleaners, doctors, occupational therapists, physical therapists and whatever else I may have forgotten.

This is the furthest from failure I can imagine. The fact that you've managed so far is nothing short of a miracle.
Be kind to yourself, take a step back and get some help for both of you.
I know you had your heart set on keeping her home as long as possible. You did. It's just no longer possible.

You did a marvellous job. You took care of her for 5 years and whatever happens now, those are the years YOU gifted her. They were priceless.
Now it's time for you to hand over that massive responsibility to professionals.

Op, what you have done is astonishing and way beyond what anyone can expect.
you deserve your own life too.
Please speak to adult social care- carer breakdown a useful phrase, and organisations like age uk etc. make sure she is getting help like carers allowance, reduction in council tax etc to fund care.
and please come over to the long running cockroach cafe threads to meet others caring for elderlies. Loads of understanding, info and support and NO GUILT.

I got stuck at your brother is coming 24 hours later than agreed because he has to walk a dog. I love dogs, but seriously? Please tell him that you cannot wait another 24 hours later, that you are at breaking point already.
Is there a reason that he cannot come over the weekend? And why his wife cannot get a dog walker in to help here if it is her that wants him to do this. This is her husband's mum. They have relied on your goodwill for too long already.

You're not failing. You're one human and you know you can't continue like this, you won't be able to help her at all if you run yourself into the ground.

You need help, ask for it, something's got to give and it can't be you, don't blame yourself.

Please call Adult Social Care and ask for an assessment. Even if your mother has to self fund care, they can advise about accessing it, assistive technology, lots of stuff. Don't hold back on the sudden deterioration and what it has meant in terms of her needs and what you are doing.

I'd also put in an urgent call to her GP to make them aware of what's going on, even in these grim days there will be visiting staff who can get out quite quickly. Again, make it plain that the situation ahs deteriorated quite rapidly and that you are struggling (as anyone would)

for you and know that you aren't failing.

Has she been checked in case she has a UTi?
They can really affect people badly and cause all the symptoms you describe.

Thanks everyone. Calls made to my brother (he's going to travel to be here tomorrow), GP (waiting for a home visit now) and social care.
I am very very bad at asking for help, and needed all of you to tell me I was allowed to do so.

Really great that you've done all that @Conversation16 and hoping the situation improves for you and your DM.

Op, glad you are looking at getting help.
a famous mantra from the vets on the elderlies board” you can’t set yourself on fire to keep others warm”, or pour from an empty jug.

Well done!

Sorry if I sounded so matter of fact before - I've just been through years of watching someone with dementia and I know there's nothing to be gained by delaying care; it can take over the entire family's lives.

I'm not even a carer and this made me well up.

OP, if ever you doubt your sensible decision to get all possible help, please read this lovely comment again. It really sums up your Herculean efforts so well.

I am a social worker for adults and I think you are amazing and not a failure. You are one person and you need a break. Carers breakdown is not unusual and take all the support you can get from social care. Hold your head up you are doing amazing x