Caring advice . Want to stop being main carer

[kerstina]

Please can you offer some advice . I have been supporting my mom since my dad died 7 years ago . Caring more about 3 years ago when she was diagnosed with cognitive impairment. Now she had moderate to severe dementia. We are on holiday with her as we can't leave her and let's just say it's not a holiday and I want my life back .
Social services are still assessing her but I want to pull back . What if we don't get carers in because she refuses ? I don't live with her but I am not coping anymore as it's all consuming . When I am not with her she rings constantly . Has anyone else been in same position? Am I being selfish or is it self preservation?

You need to speak to the social worker on your own and tell her what you have written here. They will be able to guide you as to what services are available and even count you out of the assessment as a carer if you no longer want to do the tasks. Please don't be afraid to say. Caring is extremely hard and hopefully they can talk you through your and your mums options.
If she refuses having care the social worker will complete a capacity assessment (probably if her dementia is impacting on her decisions). If she has capacity she will retain the right to refuse care but she will understand the risks. If she doesn't have capacity a best interest decision can be made to still place in carers. Hope this helps

You need to say no. And say no to everything. Stop answering your phone if that’s what it takes. It’s harsh and very hard, but it’s the only way to get social services to listen to you saying you will not continue caring for your mum. Sadly it may take (and usually does) for some major catastrophe to strike your mum before you are taken seriously and proper, sensible care is out in place by social services.
You are not being selfish. You’ve done brilliantly and now it’s got to a point where extra help is needed. You are very wise to realise that, rather than just struggling along until you collapse. Good luck.

It’s self preservation. For your mother to live safely you will need to start delegating. You’re not likely to be able to escape completely so you need to make sure you are sensible about what you can achieve. You’re going to have to make decisions for her, but the day-to-day physical and practical care should be being reduced. A social services assessment shouldn’t take that long but they may be keen to maximise your input to minimise their own so make sure you are absolutely clear. Are you registered as her carer with your GP? Joined your local carer support organisation (ask SS to signpost you).

Thanks all . At the moment I do everything. They asked what I will carry on doing if any . I said shopping , take to appointments, admin and organising repairs etc but it is the cooking of meals , medication administration and meal preparation , personal care , I want to step back from .
I don't want complete reliance on me anymore and happy to stop claiming carers allowance . Have just had enough I don't want respite I want my life back to be able to go away if I want to to on our own .
Yes registered with the GP . Am only child so it is mainly on my shoulders other than husband so the pressure is getting to me and I suffered a breakdown a few years ago. That left me feeling selfish though so think I have overcompensated by trying to look after mom . She was my best friend and it felt the right thing to do but now she is so much worse it's so difficult.

Please think about it this way- if others do the hands on care for your dm you can step back to bring a loving daughter and not a resentful carer.
And if your health is affected you are no use to yourself or her?
Remember the airplane thing about putting your own mask on before others?

I was exactly in your position - only child, mum with early dementia. I had the constant phone calls for reassurance, the medication, appointments, shopping, meals. It was all me, all of the time. The thing that broke me was the phone calls because even when I wasn't there I was still part of it. However much you do it's not enough and you can't have a day off ever because there's no cover.

Someone earlier mentioned a catastrophe, that's what it took for me to hand over responsibility to someone else. Mum had two weeks in hospital after a fall and came out with a care package. That didn't go so well mostly because she couldn't recognise her home of sixty years and she's currently in residential care, I don't know whether she'll recover enough to go home but if she does, it will be on different terms. It's been a revelation, I can do what I want, when I want without worrying about the impact on mum or how many phone messages I'll return to. I hadn't realised just how much I was doing until I stopped doing it.

There are some jobs that can easily be done by someone else (personal care, meals, giving medication, cleaning, gardening) leaving you to do bills, banking and fun stuff. There's no time for fun stuff when you have everything else to do. Imagine what would need doing if you were on holiday for a fortnight, what would need to wait for you to come back and what could be done by someone else.

Is she getting Attendance Allowance? It is not means tested so financial stuff is not necessary. You can fill the form in for her, it needs every little detail of her problems. The money can be used for anything to help.

Kristina, that is a very stressful and unsustainable situation. I totally understand as I'm an only child and my dad died 6 years ago. My mum lives nearby and almost fell apart, even though she didn't have health problems at the time. She relied totally on me for everything and it almost broke me. I have husband and 4 children and also have my own health issues, but my mum expected me to step into Dads place in her life! It took me getting v ill and ending up in hospital to change situation. She had to cope. Over last few years she has developed major heart failure and pulmonary hypertension and is very frail. I was determined not to get sucked into full time carer and so when she was in hospital I organised all help available to help her live an (relatively ) independent life. She has home - help twice daily to assist washing, dressing and medication etc. She gets meals on wheels and a personal alarm in case of falls. I still call daily and my kids regularly call too. I bring her to all appointments, organise all her shopping etc but still am freed up from the everyday commitments. It works for us as my mum still has her own privacy/independence but has us to call on. It still gets frustrating at times as my mum still calls me regularly about every little thing but I feel that she is set up to be independent of me for everyday tasks. Please look into 'out sourcing ' your mum's daily care needs , maybe through a public health assessment route. We are in Ireland, and when my mum was in hospital with her heart failure, I explained to social worker that I was NOT available for daily needs. This was v difficult as I felt like I was abandoning my mum, but if not, my mum would not have been given a care package. I still am her main care organiser but am not being ground down by the daily grind of being a carer.

It's self preservation, you cannot be expected to provide the care that she needs.

Thank you to all you responded . It is reassuring that there are others who have been in same position who understand my feelings .
I absolutely want to be a loving daughter and not resentful carer. She deserves that .
Holiday was nice in the end . I was struggling as she was walking into our room disorientated and waking us up . I wrote a note in the end explaining where she was and asking her to stay in her room as it was en-suite . It worked for the most part !
Social services have assured me that care should be in place by end of July and already I feel like a weight has been lifted and am finding my time with mom easier ( just hope they don't let us down )
Admiral nurse told me to apply for higher level attendance allowance for her as she is awake a lot at night and also to get the POA for health and well being which I thought I had got jointly with financial a while back but it seems to be just financial . Would people recommend I did this or is it too late as mom doesn't have capacity ?

With regard to POA for heath and well being, I'd strongly advise getting it if at all possible.

The document meant that we could have a say in when and where our Grandmother was discharged to from hospital and allowed us to ask questions of the medical team. The discharge team tried to place her in unsuitable homes, or back home with an inadequate care package that suited the needs of the ward, rather than my Grandmother. It allowed my family to ask for information regarding my Grandmother's diagnosis, prognosis and discharge at key points, rather than the discharge team placing her in a home too quickly that was not benificial to her recovery.

Age UK were amazingly helpful on their helpline when the hospital teams seemed not to have a clear focus, and I needed to advocate for my Grandmother. They were really clear and consise, gave advice regarding what to ask in meetings and produce factsheets to support, which are on their website. They could advise you about your specific situation. I had to hold a long time to speak to an advisor, but well worth it. Clear, helpful advice.

Good luck.

We had POA with all 4 parents. We've used them twice and both times times it was the Health POA.