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Introduction/Advice - Carers UK Forum


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Hi All

My name is Paul I am 52 and I currently work as a Contracts Manager. My mother is nearly 88 and currently struggles to get around (she needs a trolly to move around) my sister , who has retired currently looks after her as a part time carer but is not that well herself and is not really giving her the time and care she needs.

I am seriously considering giving up my job and looking after my mother full time however I am not sure what to do and how I go about things if somebody could answer my question I would be very grateful :

. Who decides if a person should receive full time care ?
. How much money would you get paid ? (I am not bothered to much about basic pay but would not want to lose my pension entitlement)
. How quickly could this process happen ?
. Who would I need to contact to try and put these things in place ?

Thanks in advance for your
Hi Paul,
Family carers don't get paid! If they earn under approx £110 a week they may claim carers allowance which is a pittance. Some carees are able to use direct payments to pay family members to care for them, but that isn't always allowed. Some Carees pay their family

Use the Upfront guide to caring http://www.carersuk.org/search/upfront to find out more.

I think you would be better staying at work and getting a Needs assessment for your Mum. http://www.carersuk.org/help-and-advice ... assessment

If you are supporting your Mum and finding it hard to juggle work and caring then try reducing your hours or working part time first.

Paul - hi

There's a LOT think about. Whatever you do decide, please please don't make it in a rush, before you've sorted out ALL the implications, most of which are HIGHLY 'life changing' and all too many of which may well prove 'irreversible'.

At 52 you are VERY young to be 'retired' - which is effectively what you will become, career-wise, if you stop work now. You might, you know, never work again - as in, if your mum lives till 100 (it's not unknown on this forum!)(one member took on their mum's care when the mum was 90, and the mum did not die until she was 100!), then you would be nearly 65 anyway by the time you were 'available to work' again.....

There are some VERY difficult questions to caring for elderly parents.

The most difficult is, as I indicated above, that we have NO IDEA how long they will survive. Medical science keeps more and more people physically alive, however frail their condition, however grave their infirmities (mental as well, remember - more below on that), and you really cannot assume that they will NOT reach 100 (or even more - as the 'horizon' on what can keep them alive changes constantly - in ten years time medicine may be keeping people alive to over 110 etc etc!)

So, taking on 'elder caring' HAS to be seen in the light of potentially a LONG time - over a decade or more. BUT, of course, it might not last that long.

That very uncertainty can be very very hard to cope with, both in practical terms, and emotional ones.

If we 'knew for certain' how long our parents would live (in my case it's my 92 y/o MIL) we could plan SO much better! Sometimes they die far sooner than we thought they would, and then, if we weren't caring for them at the time, we can regret that we didn't! Or they can live far longer, and we may come to regret that we did take on their care!

it's the uncertainty that is 'crippling'.

The only 'safe' option is to assume they will live to 100, and plan accordingly. It's not 'safe' to do anything else.

The other 'certainty' (more or less) is that unless they die 'soon' they will almost inevitably 'get worse with time'. So the state they are in now, at the start of caring, may be nothing at all compared with what awaits them. So the amount of care they need, the 'toll' that takes on the carer, when you start caring, can be nothing to what will be required in years to come.

The 'difficult' bit about that can be, as it was in my own case, that when you start caring, it's 'not so bad' and you think, OK, I can do this more or less 'indefinitely' (if that is so, that is!)....BUT, as their health worsens, you may reach a point when you CANNOT do it 'alone' any more, or even with the help of care-workers, so you HAVE to resort to residential care.

What I found with me is that when I 'took on' my MIL, she was elderly, yes (89) but had been very very independent, and I thought it would just be a case of moving her 400 miles closer to me, and finding a nice rental flat near me, and I could 'pop in and out' etc etc, but more or less she'd go on living just the way she had 400 miles away. BUT what I didn't realise was that she was developing dementia, and so it didn't matter if her flat was right next to me, she could NOT 'live on her own'. She increasingly needed me to do EVEYTHING for her, including meals, helping up/to bed, 'entertaining' spending time with her (she lost the ability to watch TV on her own, read, amuse herself, etc etc - they b ecome like 'toddlers' again, and need 'someone else' there to 'tell them what to do' etc etc)(not allways, but very very often).

SO, I took her into my own home to 'look after'....and it was a NIGHTMARE. Because I was like a 'mum to a toddler' and simply had NO TIME to myself at all. My own life 'disappeared'. SO, I had to 'save my own life' and so I put her in a home. Which was SO unwelcome to her.

The point I'm making is that because I failed to assess the situation fully (ie, that dementia was arriving, and it was making her totally dependent), I didn't realise what I was getting myself into. By having her live with me for nine months, when I DID 'put her in a home', it was FAR WORSE for her than if she'd never had those 9 months with me - I got her used to somethign she loved (me looking after her)(I'm widowed, it truly was JUST ME! Where she went I went, she was joined at the hip to me, I couldn't 'escape' ), and then TOOK IT AWAY FROM HER.

I was cruel to her when I'd intended to be kind.

So, please think VERY carefully before you take what could be either an irreversible decision, that could last over a decade, or one that you cannot continue with longterm, and end up 'disappointing' your mum, having started something (you looking after her) which breaks you.
By 'pittance' read '£62.10 a week' for Carer's Allowance.
Don't do it, please! You will regret it for the rest of your life.
Mum should have a proper Needs Assessment from Social Services, and your sister should have a Carers Assessment, aimed at your sister giving up caring altogether, due to her health. Let carers come and do what is required, then you and your sister can provide the "icing on the cake". Trips out, managing the money, making mum's life as enjoyable as possible. In short, you can help manage mum's basic care, making sure that what is supposed to happen actually does happen.
This is what I did when I was very ill, there's still plenty to do, because carers won't do anything to do with general house maintenance, picking raspberries in the garden (but buying them in Tesco!!).
This way you preserve your job, income and sanity, and have a life of your own.
Paul so many of us here made a 'knee jerk' reaction to care, and lived to regret it, or at the least, realise how little we understood what we were getting into.

I made a 'knee jerk' reaction when my MIL phoned to say she couldn't face another Scottish winter - so I immediately said 'I'll come up the day after tomorrow!'.....and I did.

There was no need for me to do that, I wanted to 'be supportive', but really I should have stood back. Gone to VISIT - ie, not immediately bring her back down to me 'indefinitely' and carefully worked out just what the problem was and what the solution therefore had to be.

You say your mum has mobility issues - but what else? What does your sister say of her? Why is your sister 'bowing out'? Is it 'just' because she isn't too well herself, or is there more? ie, if your sister were in brilliant health would she go on happily doing what she's been doing so far? Or has she reached the end of her tether?

What kind of personality is your mum? Is she determined to stay as independent as possible, or does she long to be 'looked after'? Is she cheerful and optimistic, making the best of things, or downcast and fearful and gloomy making the worst of things?

How well do you and she get on anyway? For how long? Do you both like the same food, the same TV programmes, the same 'lifestyle'. How much of your day will you have to yourself? All I could do was get about an hour or so a day to have coffee with a friend (looking after her dad), and to 'hide' in my bedroom on my laptop. The rest of the day was spent 'with' my MIL - I helped her up, made breakfast, sat and watched daytime TV, made lunch, then we went out either to the supermarket (VERY slowly!) or for a drive, and a cup of tea somewhere, then back to my house, made tea, watched TV with her (what she liked to watch), and then it was bedtime. It was only after she was in bed (she slept the night at that time - not that she does now) that I went back ot the living room and started 'my day'....

It got incredibly 'boring'. It isn't that I don't like my MIL - I do, and I'm fond of her, but she was 89 and I was under 60. What she liked doing as a very old lady was not what I liked doint endlessly as a middle aged woman. It was like expecting my son in his twenties to spend his time doing what I like doing...pretty boring for him!

Remember, caring will take over your life. It will set your daily routine, day after day, month after month, year after year. You can't just 'not feel like it' one day. Social life will be tricky, to say the least.

You don't mention family of your own, but even if you are single, it would be difficult to have a partner now, unless she/he too wanted to share the care with you (I've often thought the ideal would be a partner who also has an elderly parent - and everyone can look after each other!).

This really isn't to be 'hostile' to your mum, or to you looking after her, but to make you see what your life is going to be. That her care needs will, sadly, almot inevitably increase.

A VERY important factor is her mental health. If my 92 y/o MIL did not have dementia, it would be SO much easier! I do think that mental health is more important than physical health, because with the former you still 'retain' the person as they are. With dementia they 'drain out' in front of your eyes. It's desperately sad, but it also makes care SO much worse.

My friend (that I used to meet for coffee)(well, still do), has her dad with dementia live with her. Lovely comfy hosue etc, and dad is very 'nice' - but he doesn't see why he shouldn't get up at 6 am if he feels like it, or stay up till 1 in the morning (she has to help him up, and to bed) - his 'consideration' for her is practically nil. WHen he wants a cup of tea he just hovers until she makes one. Minor points, but after five years it can get very wearing....

I do think, therefore, that at the very least, you should, if you take your mum on, have care-workers to help out FROM THE START. That has to be 'the deal'. It will take some of the 'pressure' off you, allow you some 'me time', and prepare your mum psychologically against the day when, sadly, she may need round the clock care from an entire team, which therefore cannot be 'you'.

What does your mum think about you looking after her?
One of the 'compromises' I always put forward is this. I used it myself for a while.

IF, say, your mum moves into say sheltered accommodation, or a residential care home, or has, say care-workers looking after her during the week, or your sister, or whatever, then what YOU could do is this:

Stay with your mum over the weekend (or have her come to you, whichever suits better).

In a way you are 'time-slicing' her, so that instead of the all-or-nothing 'YOU look after her full time' vs 'YOU don't look after her at all!', there is a compromise that gives her some of the nice stuff about having her son with her (which I'm sure she'll enjoy!), and gives you some time with her (because, hopefully, your relationship is good, and you want to make the most of her before her life draws to its close). BUT, it also means that you get enough time for your own life, your own things too.

I did this a bit with my MIL. WHen I 'cracked' and said 'I can't do this any more' and moved her into a (very nice!) Abbeyfield home near me, what I did was have her come to me twice weekly for 'sleepovers' where she got the 'cosy life' I'd provided when she'd been staying with me, but that afterwards I could deliver her back, and get on with my own life until next time she came for a 'sleepover'. It worked well enough for a time (Sadly, she never accepted the care home - by then she'd got used to me looking after her - that's what I mean about careful what you start!)) and secondly her dementia worsened beyond the capability of the Abbeyfield - and she kept wandering off into the road etc. So she had to go to an actual dementia home, where she still is. I still take her out for drives and we have a picknic cream tea by the seaside!Very pleasant and doable!