How can I be a good carer again?

[Ankleblisters]

I don't know if this is the right place to post - my mum is not 'elderly' really. She's only mid 60s. But she has late stage dementia.

I moved back in with them in the first lockdown and we've made it work. I actually thought we were doing a pretty good job. I do all the personal care and hygiene stuff that I feel like my mum wouldn't have wanted my dad or a stranger to for her. I build my entire day around making sure she doesn't have to have any one else do that for her. I also cook 60-70% of meals and spend roughly 70% of my time with her keeping her busy and entertained and active. The rest of the time, when I'm working which is luckily only 2-4 hours a day, my dad does activities with her or takes her out somewhere.

That's been the pattern for the last three years now. It was working fine. I think I was on auto-pilot. I thought we were doing a good job and that was all that mattered and I switched off every other thought except mum and work.

I had a pretty serious eating disorder all through my adolescence, twenties and the start of my thirties. It's got in the way of forming any relationships or friendships or having much of a career (although I've established my career now and its going well) Moving in with them really stabilised it because I had to stay healthy to look after mum. But in January they went to stay with my sister, who lives abroad, for two weeks. And I relapsed really badly and now can't turn it back round. I'm trying to get help but waiting lists are really long.

My nerves are so frayed. I adore my mother but suddenly I'm impatient all the time and so many things she does are suddenly so frustrating. Especially stuff like dressing her or trying to move her/get her to move because she is heavy and uncooperative and I can't keep up the kind and jolly facade that worked so well before. I feel so irritable about small things. I feel like caring for her is the only thing in my life that matters at all and I'm not doing a good enough job of it right now. She deserves so much better.

Please advise me - how do you find the energy when you are spent? How do you keep finding the joy and worth it in when everything feels so so constantly difficult? How do I turn this around and be a good carer for her again?

I think this is more about learning to take care of yourself more than than your mum almost xx

What changed when you went away op? Did you sneak a peak at the life you should be having? I would not want my children to be my cater in such circumstances, I’d want them to be fulfilling their own lives. Just wondering what the bigger picture is

My sister did the majority of care for my DM like this for years. Mum was diagnosed around 60 and is now end of life at 69. It takes a huge mental toll.

If your mum is like ours she may have or have had the outward appearance of being young and healthy and still be physically strong given her age. This doesn't help. How you feel about keeping up a facade is entirely normal. You are drained. Its incredibly difficult to keep up.

We should have involved social care a lot sooner than we did but even then DSis would not have more than a few hours away while we were present rather than a stranger.

Could you see if there are any carers groups in your area? Age UK may be able to advise on services available in your area. Have you got social services involvement. You don't have to accept services for your mum but it may be worth doing now anyway and having her on their radar. You can also ask for a carers assessment.

You've done wonderfully by your mum but getting help is not doing wrong by her. That help can be for her or for you and can take so many forms. We stopped making her special meals and used a service to provide meals of the right consistency etc. she still had things she enjoyed and were good for her.

She needs to be assessed and have formal support in place so you can have balance in your life and self care. Having carers in is not a bad thing. Many are lovely and can offer important social contact

OP where are you in this ?

Blocking everything except looking after your DM and working is no way to live. You're presumably in your 30s - 40s.

It's devastating that your DM has dementia at a relatively early age, but that does not mean that you should dedicate so much to her at the expense of you. I think your ED resurfacing is your body's way of telling you this situation cannot go on.

I'm sorry but I think you need to be looking at care homes for everyones sake.

You had a short break and you saw what life could be like

Can you father pay for care to come in?

Contact adult social services and ask them to come out urgently to assess your mum

You need, at least, respite care.

Can your father afford that?

Adult social care should help with respite

Would you consider moving out and coming in twice a day to assist your mum? Are you able to increase your work to improve your income?

Why do you feel like your Mum wouldn't like your Dad to do the personal care and hygiene stuff for her? In her position I would much prefer my husband to be doing it than one of my children.

Sorry, I don't think I explained it properly. My father took my mother away to stay with my sister overseas - mostly because we were having an accessible bathroom put in and were concerned it would be really disruptive. I stayed to oversee the work and also because I needed to work.

I think when I was alone my life suddenly seemed completely empty and lonely and pointless without the structure of caring for my mother ... and my mental health kind of fell apart.

Part of that was accidental, I stopped cooking because I couldn't be bothered for just me, and then I had to attend a funeral where there was nothing I could eat all day for various reasons and that re-triggered things pretty sharply. It surprised me how sharply it happened.

Sorry, I don't mean to drip feed. We do have a carer come in for an hour and a half once a week for companionship. She is brilliant and Mum loves her. She doesn't do any of the physical/practical stuff because I think Mum would be uncomfortable. While she is here I am able to get an hours work in.
Mum also goes to a day centre once a week for three hours and again they don't need to do any personal care because we time it so she has a change of incontinence pant immediately before and after, at home. That also means I have time to work, and sometimes even go for a walk by myself.
It's not that we don't have enough help. I thought the balance was about right.

It's just that suddenly it all suddenly seems completely relentless and I feel like my resources are totally spent. I can't seem to pull myself back together to care for her with the jollity and patience and cheer and gentleness that she deserves

It came from something she said to me pre-dementia but also when he was first trying to help her in that way it was clear from the way she was reacting to him that she found it really uncomfortable. It was also obvious that he did to. And she was getting repeated UTIs from not being properly cleaned (and in the correct direction). So we agreed I should do it.

I think I might be a bit paranoid about it now because I'm so anxious about her getting another UTI and she hasn't had one in over a year now. They are hard to treat because she can't swallow pills and antibiotics that treat UTIs most effectively don't seem to come in liquid form.

I think it's too much for you (as it would be for anyone). I think the overwhelming responsibility is what's really triggered your ED, not the apparent triggers if that fortnight.

That is not enough outside support for an incontinent person, you should look to get more. Ideally daily. Is the current care visitor private or from the council?

Yes. I think you were in the habit of boxing everything off and focussing on your mum, and the break let the bleakness out of the boxes.

It sounds as though your sense of purpose and fulfilment in life comes only from giving your mother such superlative care. But something has changed now and you are suddenly struggling.

I feel very concerned for you. Have you seen your GP urgently? I think the focus needs to be on you, right now. Could your mother go into respite care? Please do talk to the duty desk at adult social care locally and get an urgent GP appointment tomorrow.

Also, the dementia is progressing and is making her more uncooperative (nature of the illness, sadly - my dad now swears at his carers whilst 6 months ago
he was still “himself” in manners) - you may see that more clearly after the trip away, like when you don’t see a child for a bit and suddenly they shoot up!

The time breakdown in your OP between you and your father is pretty shocking to me. Why is he not taking more responsibility...surely he can remember which way to wipe(!), do cooking and spend more time with his wife. Your mother's discomfort is certainly no more important than your ability to focus on your own health...or time to create an independent, balanced life whilst you are young. Good luck.

OP I'm a very experienced senior care assistant, I specialise in dementia care and have worked both in community and care home settings.

You're feelings are normal, and valid and have shown you that you need to find a better balance for both yourself and your mother. This situation isn't healthy for any of you and some boundaries need to start to be put in place, which will be easier and best done now than further down the line as her dementia worsens.

You need to contact social work and organise for her to have an assessment of her needs, and ensure you say you can no longer care for her needs fully yourself.

For those saying the father/husband should do more, often the spouse can be the emotional punching bag for someone with dementia and they won't allow them to physically provide personal care.

You've done all you can OP, it's time to reset and take care of yourself and in turn, it will mean better and balanced care for your mum too in the long run.

What resources can you access for yourself? Sounds to me like you have pushed a lot of feelings down while you were so busy with your mum and when she was not there for two weeks they burst through and floored you.
I would prioritise getting some more help in to free up extra work time for you. Then you will have enough resources to pour some help into you. You cannot pour from an empty jug. You have not failed in any part of this. You have been wonderful and kind and very giving. Do not reproach yourself. Swing that beam round a bit and get the help you need now.

Thanks so much for all the encouragement and kindness. I think it really helped to feel heard and to feel understood by so many of you. I cried a bit reading some of your messages. I really appreciate the support.

… the same way that stress at work can build up, but it’s not till you get a few days off that you find yourself a blubbering wreck hiding under the table? It’s not that the break has triggered it, the break releases the pressure and allows the stress to come through.

This feels like way too much intrusion into your life. My mum has had a very quick demise from dementia, within 6 months of showing symptoms she has had to go into a care home. It has been heartbreaking and a very difficult journey but my dad couldn’t cope and whilst there are three very loving and attentive siblings, we all have jobs, young children and our own lives, plus don’t all live locally. But irrespective of that, no parent should want their children’s lives to be spent looking after them. It’s just not fair.

Sometimes it takes a long time (much longer than it should) to realise a situation isn’t working, that’s ok. But now you need to make steps to take back your life. You deserve to find your way back to health and away from this overwhelming responsibility. You are still young and have a lot of life ahead of you. Make an emergency social services appt for her and GP appt for you. Best of luck, you’ve got this.