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Hi from me - Carers UK Forum

Hi from me

Tell us a bit about yourself here.
I am new to the forum, and am one of 2 out of 4 sisters who provide daily care for our mum. She lives at home and we visit daily. My sister visits more often than that even, and I am the first to admit that I am the 'second' carer. My tasks usually involve visiting to listen to 'groundhog' conversations, provide lifts, push her in her wheelchair, take her to appointments etc. She has always been a bit manipulative, and it is now difficult to decide whether she is confused or manipulating sometimes. She definitely loses time, sequence and nouns. She says very negative things about people in their absence.
I am so stressed when I am with my mum that I am struggling to offer even as much as I do. I am hoping that being a member of this forum will make life a little more bearable.
Thanks for reading this.
Hi Alison,
Whatever anyone tells you, you do not have to do ANYTHING for mum.
The only power she has over you, as a grown woman, is the power you let her have!
It is NOT up to mum to tell you or your sister what she wants done, it's up to you to choose what you want to do. You can't change mum, but you CAN change how you respond to what she says or does.
I had counselling to help me with my own mum, disabled and housebound, who "saved" jobs for me, newly widowed, with a business to run, a son with severe learning difficulties, when I'd just had a serious car accident (that wrote off a Range Rover) and need two knee replacements! Lots of others here have had problems with an elderly parent.
Can you tell us a bit more about mum? You don't have to answer any question, but it would help us understand more.
Age? Disability? Does she rent or own her home? Have over £23,000 in savings? Claim Attendance Allowance? Does your sister claim Carers Allowance? Does mum give either of you anything for the care you provide? Has she had a Needs Assessment from Social Services? Have either of you had a Carers Assessment from Social Services?
Finally, are you and your sister now reaching the point where you feel mum needs residential care?
Hi Bowlingbun,

Thanks for replying.

Yes, I agree that in theory I have a choice about what I do, and I do try to make that choice by only going for one visit a day most days, keeping up a little job so that I can officially go somewhere else one day a week, and meet younger and more vibrant people, and travelling up to see our daughter and grandchildren every couple of months.

I don't think that residential care will ever happen, as my sister intends to move in if it comes to that.

Mum has many physical illnesses, e.g. diabetes, kidney disease, short bowel following bowel cancer, arthritis, glaucoma, cataracts.... we have a GOP service that is quite obliging, but we are relied upon to manage her day to day needs.

I think she has more than ? 23 000. She gets attendance allowance. She doesn't pay us. I would rather that she paid carers/ cleaners etc to meet more of her needs, so that I could carry on just being her daughter! This year I dug my heals in and told her to get a gardener. She did this reluctantly but now likes her coming. I feel this would be the case with carers eventually, but I feel the pressure to perform these duties when the needs arise.
Make it clear to your sister that it is HER choice to keep mum at home, then she must deal with it, rather than suck you in. It is a REALLY bad idea to even think about moving in with mum, just look at some of the other threads here to see that.
Maybe suggest to your sister that she joins the forum.
Sometimes, people need more care than one person can provide. Mum SHOULD be paying you both for the care you provide until such time as she gets below the £23,000 threshold for support from the LA. Maybe explain this to mum. She is allowed to pay for her care, whoever provides it, whilst classed as "self funding".
Is your sister stubbornly saying she will care for mum whatever happens?
I think other carers often blame the carees for putting pressure on their loved ones to help when quite often it is family pressure from siblings and wider family that really creates the pressure. And it"s harder to resist because they're going to be around for longer and existing family dynamics which usually have a pecking order of eho does what who says. I know my sister and I are going to have a huge row if our parents ever need care. Possibly less now than a year ago as she's had to become a carer for her husband to a degree this year since he had a heart attack and wanted to carry on as before.
My family is a complicated one, and if anyone holds the responsibility for the strained dynamics, I'm afraid it is my mum. I have read a lot recently and I would say that she is highly narcissistic and has influenced our lives by trying her best to make us two youngest siblings codependent. Counselling has helped me to identify this, and to find it within myself to reflect on what is happening, and offer care that is needed versus care for needs that are created to keep me on my toes! But boy, it is hard!

I would be the last person to criticise my sister. Rather, I worry that she is being over controlled, and yet feel unable to offer any more assistance than I already give.
I had counselling to help me manage my mum's demands. Give me a couple of examples of invented jobs anď I might be able to help you deal with them, without ever actually saying no!
I had a HUGE row with my sister about 2 years about when things were terrible with my Mum and Dad. My kids were 3 & 5 and I was doing as much as I could, and it was killing me and making my family really unhappy. She accused me of not doing enough and we fell out for months. I don't blame her, the situation had made her unwell and the demands were constant. I think it was easier for me having small children as I knew they came first, but my sister doesn't and so I think Mum and Dad (unfairly) demanded more of her.

We are now in a position where we both do what we can manage and everything else falls to carers. Mum is not happy about this. She told my uncle the other day that she finds it humiliating. But I just ignore it, because I can't do it all and it is what is necessary to keep her safe and for my sister and myself to have peace of mind and a life. I have kids and I know that I would take "humiliation" any day over them running themselves into the ground for me.

In my family, there is real attitude of you look after your Mum and Dad and if you don't then you are a horrible feckless person. What I find really annoying is that my Mum and Dad never really had to care for their own parents!

Mum having carers in has meant that we are starting to have a more normal relationship and have some nice times. This time last year I dreaded going in and pretty much hated any interaction with her!

I think all you can do is decide what you can cope with, stick with that and try and influence your sister to do the same.

Good luck!
My mum knew very well that I had a son with learning difficulties, but the counsellor suggested I told mum that M had to come first, as he couldn't speak up for himself, she could. She did NOT like that, wanting to be top dog, but it really clarified for her that I couldn't be available whenever she wanted.

She could not choose what I did and what she did. I chose what I could manage to do. If she couldn't manage with that and carers, then residential was the only option left NOT ME DOING MORE!

I know how difficult it was to admit this to myself, never mind mum, because I'd done everything for her for over 20 years until I became very ill and had major surgery. It really helped me accept my own situation too, not just mum's.

Your sister would really benefit from talking through her feelings about the responsibilities of caring with a good counsellor, it's not right that she takes her frustration out on you in any way. You are doing your best in your situation.
I agree it's tricky when siblings both have differing ideas about what care to provide, and when a parent is busy 'dividing and conquering' between them (whether consciously or unconsciously).

Time to sit down and do several important things:

- Make a list of ALL the care mum NEEDS (ie, irrespective of who provides it).

- Make a list of all the care mum WANTS (ie, separate from the needs!)

- Make a list of what EACH of you is (genuinely!) willing to provide (IGNORING GUILT-INDUCED WILLINGNESS!) (ie, the things you genuinely would do, if guilt did not exist!)

Finally, anticipate how all of this will change in the future, as your mother's health inevitably declines.

It's great YOU are having counselling, and it's spot on that business of 'real needs' and needs 'invented' to get you to 'toe the line 'or pay attention to her' etc etc. Essential to differentiate!

All of that said, if you and your sister sit down and STILL disagree of on just what it is the 'joint pair' of you are willing to provide, then it truly is 'over to your sister' to fight her own 'guilt-demons'.

Otherwise it ends up with her 'dragging you in' and you having to 'collude' with her 'pandering' to the narcissm of your mother, and that's a horrible, horrible situation to be in.

In the end, providing each of you take the 'fall out' from your own decisions, you are EACH free to decide what to offer your mum, and what not.

For example, a friend of mine has her dad with dementia living with her. She used to do 'swaps' with her own sister, where the sister would have the dad to give my friend some respite - it wasn't equal by any means, my friend still did the lion's share, but the breaks really helped her cope. However, the sister got to the point where she wrote saying she didn't want to do it any more, couldn't face it, and that the dad should move into residential care.

Now whilst I could see that my chum felt angry at her sister dropping out, in the end it was NOT the sister's responsibility to be the 'enabler' (it was that role) for her father to avoid a care home.

So, what has happened now is, I think, the 'fairest' possible in the situation. My friend has the dad 'permanently' BUT he is 'paying' for that, including paying for having live-in carers to allow my friend to have her own vital respite breaks/holidays etc (or she'd crack). So, when the time comes and he has died, my friend will get more of the estate (plus it's reduced anyway as the dad is 'paying' her for care), and the sister will get considerably less. The sister is 'paying' NOT to care, if you see what I mean.