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New to Carers UK and currently struggling with my new role. - Carers UK Forum

New to Carers UK and currently struggling with my new role.

Tell us a bit about yourself here.
Hello Everyone,
My name is Tamsyn. I am a former Senior Occupational Therapist having left the profession in 2009 to care for my mother who was then diagnosed with cancer. I have tried retraining in many different roles having been unable to renew my HPC registration, but it feels like my life is not my own. I retrained as a bookkeeper and set up my own business so I could juggle caring with an occupation and had to give that up due to my father dying of cancer and Mum having repeated sepsis and mini strokes. I then tried to do a PGCert for myself and although was unable to gain the PGCert due to caring disrupting my studies, did gain Early Years Teacher Status to use some of my OT skills in preschools. Last year I managed to find myself a job and was due to start in the New Year of 2017 only to have to turn that down as Mum fell ill again. In the December we nearly lost her due to global brain damage caused by congenital TTP (Thrombotic thrombocytopenia purpurin). She pulled through and over the past year I have travelled 120 miles every week to stay with her and rehab her. However, the journey was taking its toll on my health and my marriage so over the summer we agreed as a family she would move closer to me where she could have independence (area is known to her and some shops are walkable distance (having had her driving license revoked) but would also have me near by for shopping (numbers have not come back) and general help she may need together with help in emergencies (her husband, my step-dad, is 14years her senior and riddled with cancer). I have no help from siblings despite my requests and am struggling with having to let my life go whilst they go on to live theirs. I am also now so exhausted that I'm unable to help with the unpacking and sorting of all her stuff having moved. And we are talking loads of stuff, to the point of hoarding, that she will not let go of. I am so frustrated that my brother was meant to be helping this weekend and came up to see Mum but just turned it into a jolly doing nothing to help and making more work for me having boarded him and his young daughter. I am going through so many mixed emotions at the moment. Anger, guilt, resentment, exhaustion. Is it so wrong to want to protect my health and sanity when caring for them has cost me my physical health and is endangering my mental health? There seems to be such little support with counselling this neck of the woods costing at least £60 a session - I would have £2 to live on plus no life. Ps: Mum is experiencing more independence where she is now but admits the clutter is getting to her but I dont have the physical health to help her (I have torn to ligaments in my elbow and shoulder having to have to do things in the past and during the move) and no longer the head space to deal with the clutter. I need a real but neither will go into respite and family are too busy living their own lives to help. Not particularly looking for answers, just looking for a place to rant and be understood.
Tamsyn, welcome to Carers UK forum. Many of arrive here 'in crisis' (I know I did!) and the first post is often a massive outpouring of everything that is overwhelming a new member - it's not at all unusual (sadly).

I'm going to start by saying something that will sound incredibly 'unfeeling' (!) but bear with me!.

It's this:

One of the grim, grim truths of life for all of us is We Get The Behaviour We Put Up With.....

Now, before you take a swipe at me (because you probably reacted with 'instant rage' to read that, as if I;m saying, hey ho, Tamsyn, my sweet, it's completely up to you you know this problem!, that IS NOT what I am getting at.

What I am getting at is several things. One is that in many families a single person is 'cast' as 'carer' (or 'breadwinner' or 'depressed person' or any other of many 'family roles' etc etc)

And your family has cast YOU as Good Old Tamsyn! She'll Look After Mum and Stepdad. Hurrah! (And that's not just your siblings, it's your mum and stepdad too, remember!)(and, most dangerously of all, it's also YOU 'casting yourself' in that role.)

A key part of his 'casting' process is that when it comes to ourselves we are usually 'programmed' throughout our childhood and youth to take on this role. Mainly, and this is key too, because it SUITS OTHER PEOPLE in the family! Sometimes, yes, 'we' ge a sense of satisfaction at being 'the capable one' (if all the others are useless and helpless and feckless!) but being 'capable' doesn't mean YOU have to compensate for all the 'uselessness' of the rest of your family.

Ok, so the 'casting/programming' is one aspect of that 'We get the behaviour we put up with'.

Another key one is that we feel 'guilty' if we don't do what others want us to do (in your case, lift the dreadful burden of their parents from your siblings and ease the situation for your parents)(I'm going to say 'parents' as it's easier, apols) (I know he's your step dad).

Guilt is, perhaps, the 'malign manifestation' of compassion. We feel sorry for people, and therefore we feel guilty if we don't make their lives easier. But we have to stand back and think 'Am I responsible for the basic situation' (ie, your parents ill health etc etc). No, you're not.

Ask yourself - are their rights greater than mine? Do they have a greater right to want they want than I do? Again, no. YOUR LIFE is JUST as important and valid and 'entitled' as your parents!!! I could argue 'more so' in fact as you are younger and have had less of it than they have!

The bottom line of 'you get the behaviour you put up with' boils down to 'Well Don't Put Up With It Then!'.

More below on how to make that happen.
OK, to stop 'putting up' with what is being 'dumped' on you by your parents and siblings, you will HAVE to 'harden your heart' and start saying 'NO' to them.

It won't be easier (see 'programming' and 'guilt' above!) but it can usually start to happen when YOU reach 'breaking point' - which you are fast approaching. (That's why you joined us!).

Learning to say 'no' is hard, but it can be done, and many of us hear have had to learn how to do it - or else we'd be six feet under from stress and overwork from caring!

It's also going to have to be essential to, bluntly, 'withdraw your services' form the situation.

For example, with respite, you have to spell it out - If you two do not go into respite I am WITHDRAWING MY CARE of you.' You HAVE to mean it - and do it!

It's absolutely disgraceful that your parents are not prepared to do this small, small thing for you, and give you a break - absolutely disgraceful. Only 'deep dementia' could excuse it, and even then it's hard to stomach!

At the moment, your parents take you for granted, as you have always done what they wanted, and 'knuckled down'. Your appalling siblings are simply taking the pxxxx and saying, maybe 'Oh, Tamsyn should do it, she's best at it and anyway, there isn't any thing else going on in her life is there, so she might as well! Keeps her busy ' (blah blah blah).

You said you had a family conference and decided to move your parents nearer you. WHO decided that? Because it has all the hall marks of something that suits everyone but YOU!!!

I've said very general things about 'recoginising the problem' (ie, that you've been 'cast' to 'put up with it all' etc) and that you will HAVE to learn to say NO and mean it, and make others take the consequences of your refusal to be their 'slave' (which you are, you know - constantly putting your own life 'on hold')

Next is to see what the practical options are to lighten the load - ideally to remove it completely just about.
Some basic questions to 'plot us in' (NO obligation to answer them at all - only if you want)

- how old is your mum and step dad?

- how far away are from you now (journey time - eg walking distance ,short drive, bus journey etc etc)

- how far away are your siblings (you mentioned your brother came to stay with you, so presumably too far for a day visit?)

- What does each day look like for you now? As in, what is your daily routine, and how much time do you spend over at your parents?

- what do you do for them while you are there? (eg, personal care, cleaning the house, cooking meals, keeping company, taking them shopping, on visits, whatever whatever) (To put some comparison in - when my 89 y/o MIL came to live with me - briefly!(Icracked!), each and every day was spent 'on her' - making breakfast, watching TV, helping her dress/shower, washing her hair, making lunch, more tv, taking her shopping, or for a drive, back for tea, more tv, then supper, more tv, then helping her to bed ...every, every every day. My 'time off' was heading up to my bedroom to hit this forum (!) and going off for coffee several times a week with my friend who has her father living with her....in my absence MIL fell asleep in the lounge.... This did not stop until I cracked, and she 'went into a home'....sad but it was her life or mine!)

- what else do you do for your parents (eg, sort finances, paperwork, book GP appointments etc etc)

- How much time each day is 'yours'

- do you ever meet up with friends, have time to yourself?

- do you get to spend your evenings by yourself

- are you 'on call' during the night?

- If you went under a bus tomorrow, what would happen to their daily lives? (assuming your siblings stayed away). Ditto if yu simply went to spain for a fortight on holiday!

- how much 'extra work' is being caused by their move, you mentioned all the clutter to sort! Whiat else?

- are professional care workers coming in to do anything, or even cleaners?

- will they accept them, or are they saying 'we don't want strangers looking after us' ('and we don't need them because Tamsyn is doing it all anyway!'

- do your useless siblings do ANYTHIGN at all for them (other than 'visit' like your brother and then bum off you on top of that!)

- what can either of your parents still DO to look after themselves? (You said your mum had a bit of independence)

- what is their financial position? Do they own their own property, do they have savings, what is their income (this is all relevant to getting in outside help)

- are your parents 'paying' you to do ANY of what you are doing for them! (because, after all, looking after them has stopped you earning your own living......)

- what do you think careworkers could do that you are currently doing?

I know this is a huge list, but the idea is to break down what it is you actually do, and why, and whether there are other options for getting it done and, perhaps, whether it needs to be done at all (one of our members here, and I'm surely she'll be posting, is expert at 'trimming back the workload' from things like 'concreting over the garden' (!) to 'only having dripdry clothes that don't need ironing'!

It all boils down to - what NEEDS to be done, and who CAN do it?

The brute problem is that while YOU do everything, no one else has to do anything at all! And believe me, your useless and selfish siblings will continue to do sod all while you let them. (By the way, let this be the last time your brother lands on YOU - he can go and stay with his mum, even if it means sleeping on the damn floor!)

One of the main sources of pressure in all of this is that we are so busy 'coping' and 'firefightin' that we find it difficult to stand back and look at the bigger picture. Only then can we start to 'manage it down' to lessen the burden on you.

Hi Tamsin, welcome to my world!
The more you do the more you will be expected to do, like a hamster on a wheel going faster and faster and faster until YOU crash.
So now you MUST put yourself first. Your role needs to change from care provider to care supervisor.
What do you want help with most? I too had a hoarding mum, 60 dining chairs, 10 dining tables, 10 sideboards...it took us a year to empty the place. By never having a blazing row, but behaving like a good little daughter who always did what mummy said, my life too was controlled.
Even when I was newly widowed, newly disabled in an RTA, with a business to run and a son with SLD, she still wanted me to do millions of things. So I had counselling, which taught me to manage her expectations.
First, what is her financial situation? Does she have over £23,000 in savings? How much does she pay you to care for her? (!)
Has she had a Social Services Needs Assessment, and you, a Carers Assessment? As she has severe mental impairment, did you know she is probably entitled to exemption from Council Tax?
Is she receiving Attendance Allowance?
You now need to plan a holiday, which you WILL go on. Then everyone else can do their bit and see what needs doing. Either mum accepts outside help or she moves into residential care. You cannot run around after her constantly.
Having re read your introduction, are you now caring for step dad as well?! He too should have all the assessments, benefits etc..
I bet the rest of the family were delighted at being able to dump everything on you, selfish lot! You give up everything and they keep their lives ticking over as normal, doubtless hoping to get their share of her estate in due course. You really do need to start looking after yourself first. For example, being paid for the care you give and getting a share of her in due course which recognises your devotion, and their lack of it!
With regard to the clutter, if it's getting her down and she really wants it sorted, try to find a professional declutterer in the area. I know how futile it was with my own mum. The only way she would let something out of the house was if either I or my brothers, or their children, took it. So we agreed that if she ever offered anyone anything, then TAKE IR! My elder brother worked abroad, seldom came home, and had a bungalow near mum. So we would often ask her if she wanted to give it to Ian, then he would deal with it when he got home. Unfortunately Ian was then diagnosed with pancreatic cancer so ultimately I stlll had that to deal with as well. Two house clearances in 2 years.
I am now ruthless in my place, I never ever want to leave my kids with the same mess that I was left to deal with. If I don't use it, I don't want it, eldest son (who lives with me) doesn't want it, the item is sold if it's worth a lot, otherwise it goes to the hospice shop, the charity bin, anywhere but stay!!
We ask ourselves if we could afford to buy another one, if we chucked it and then regretted it? The answer to that is usually yes, so there's absolutely no need to hang onto it. It's only now mum has died that I realise how indoctrinated I was never to throw anything away. If you think that whatever you give away is going to a new life and someone that wants it, it's easier.
Apart from my personal clothes in my bedroom to go to the Salvation Army, and the sewing stuff in my sewing room, to go to the local secondary school or Tools for Self Reliance which helps third world countries, I own very little. I don't count the kitchen equipment as my son will need that anyhow.
Hi Tamsyn
In most NHS areas you can now self refer for cBT counselling, which is free and mostly supplied on line or by phone. Face to face is available for severe needs. I'm doing it online and it seems to be helping. For real time 'sounding off' the Samaritans are good.
Also your local carers support should be a good resource for details of counselling and many other resources that may help you.
All the above can be found through Google.

Stop 'requesting' help from relatives, simply tell them what they have to do. It may take several repeats until it sinks in, and if you threaten anything then make sure you carry it through.
You are most certainly not alone feeling this way
Hi, only a quick post this time (phew, relief!)

The basic principle you need now is to understand that others DO NOT HAVE YOUR COMPUNCTION.

YOU may feel you 'should' look after your mum and step-dad, but your siblings don't! They have NO COMPUNCTION for you, and neither, alas, does your mum/step dad by refusing to help you go on holiday by going into respite care.

Selfish people always dream up 'reasons' why what they do is OK - that's what enables them not to have any compunction for others.

Selfish people 'feed' off unselfish people.

Selfishness in others can only ever be 'challenged' not 'cured' - ie, your siblings won't, of their own volition, stop being selfish, and neither will your mum/step dad (in so far as they are).

Remember -you get the behaviour you put up with!

PS - about the decluttering - you don't need to do this 'all at once' it can be an 'ongoing project' that can take months and months. If your mum gets too sentimental about stuff, offer to take it to charity shops 'so it can do others some good, Mum'.

PPS - you don't mention your step-dad's family. Where are they in all of this?