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Introducing New Member - JessTheCat - Carers UK Forum

Introducing New Member - JessTheCat

Tell us a bit about yourself here.
92 posts
I have read this with tears in my eyes - and it has made me feel so much better to read that my mother isn't the only arch-manipulator around!

My mother is 95 and I'm 60 - my husband is 58 and his mother is 92. My only relatives are my mother and her sister, my aunt, who lives in Australia and is 91. My husband has loads of siblings and relatives but none of them are willing to help.

My husband's mother is unwell and has dementia - he gets to her house at 7am on Monday and leaves at 9pm on Friday. We cajole and bribe his relatives to take over at the weekend to allow him a days rest and a days security work to earn a little bit of money - he refuses to claim carer's allowance, sometimes he's very stubborn!

My mother has been reasonably well and living independently but I have spent one day per weekend with her for about the last 15 years. Recently she's had a few bad falls and is currently in hospital unable to stand unaided or even sit on the side of the bed. She has assumed that I am going to go and live with her (35 miles from where I live and work) and look after her when she comes out of hospital. Now I know that the chances are that they will recommend she goes into residential care but I'm terrified that she'll be sent home. I know how awful this sounds.

We've never got on particularly, she's always been a critical and anti-social woman and is eternally disappointed that I didn't turned out to be the prissy missy mummy's girl that she'd hoped for! She has no recognition or acceptance that I've given up a lot over the past 15 years to enable her to stay independent - although in good health she's been confined to a wheelchair outside of the house since a bad leg injury - so I've taken her shopping, done the housework, taken her out to get her out of the house, cooked meals for the week for her (which are never right!) and having just one day a week to do my own chores.

We've had 3 holidays in that time but every time we come back it's 'oh, I didn't want to say anything before you went away but I was so ill.......' - every damned time. We don't go anywhere anymore.

I'm desperately worried that I'll be expected to give up work to look after her and I just can't - with husband only working Security one day a week it's only my salary that's paying for us to live. She has had carers before after minor falls but has always sent them away after a few weeks, as Joan (OP) says 'she only wants me'! I'm sure she thinks she'll have finally won the battle if she can make me do what she wants. Although she is feeble in body she is very sound of mind.

I know that compared to what you all do this is very little and I'm being a bit of a wimp but I can't do it. She's the sort of woman who likes to sit there in silence (no TV allowed!) with a nice cup of tea, smiling at each other and having polite conversation. I like heavy metal and going to gigs and motor racing. I know it sounds flippant but every time I'm with her she tries to change who I am!

Husband and I don't see each other very often at the moment, we managed 3 hours yesterday evening, before we both we fell asleep, and when we are together all we do is talk about 'the mothers'. But the worst thing is that we're both so tied up with our own responsibilities that we can't be much support to each other - our mothers' homes are about 50 miles apart so we're not nearby.

Anyway, I've taken up enough of your time. I feel much better for this rant. I hope you won't mind if I update at some point.

I just want to add that reading through this thread you really are amazing - I'm so impressed that you all have the strength of spirit to cope - I hope some rubs off on me......
Hi Jess,

I'm splitting your post from this topic into one of it's own - as I think you deserve a thread all to yourself :)

Don't belittle what you do - believe me you do a lot and you and your OH have quite a heavy load; it says a lot for both of you that you are still together despite all the time you are being forced to be apart. It also says a lot that you both still provide care to your respective Mum's despite lack of family support.

With regard to your Mum being discharged from hospital - don't let the hospital discharge her on her say only. Parents are quite good at saying "I won't need any help, my Daughter will look after me" without any regard for whether or not the Daughter is in a position to do so. Before she is discharged the Occupational Therapy team should do a home visit to ensure that her home is safe for her to return to and that any 'aids' needed are ordered and in place beforehand. Try and make sure that you are included in any discussions surrounding her discharge and let it be known (forcibly if necessary) that you will not be able to provide 24/7 care. In any case she should eligible for about 6 weeks care - it goes by different names in different areas, but around here it's called "Re-enablement Care".

Finally I would say it would be a good idea to involve Social Services and ask for a Needs Assessment for both your Mum's and Carers Assessments for both of you - it's obvious from what you've said that both Mum's need more support than you alone can provide.
Oh my goodness, JessTheCat (love the name!) - where do I start?!

I'll start by saying Welcome to the Site that can Save your Sanity!!!!

Second, I'll move on to the most important thing you've said - that will be, I think, the foundation on which you save your sanity.....

It's that you recognise what your mother is - an 'arch-manipulator'. That recognition is absolutely essential! It is the key to the situation you are in, because, however much you do love her (despite the life-long friction!), knowing that she is, for want of a better way of saying it, totally prepared to exploit you for her own benefit (and, yes, perhaps to assuage her own fears too, a more kindly explanation for her manipulation of you), but armed with that knowledge, you can start to change things.

And change things, surely, you must - or you and your husbands' lives are basically 'on hold' until your respective mothers die.

So, with that in mind, when I read the descriptions of your current lifestyle, my first response is 'This is nonsense!' It's completely unacceptable that both you and your husband have to take on the entire care of your mothers single handedly, non-stop.

Time to call in outside help!

To enable that, the first step is to look at your mothers' respective finances. Do they have the funds to pay for outside help, or will they need to rely on the state. (Relying on YOU is NOT an option!)

It is, I can tell you, a 'universally acknowledged truth' on this forum that until family carers throw in the towel and say 'No more!' that SS/NHS will do, usually, sod all to provide any care (if it needs to be paid for by the state). The same is all too often also true if carees do have funds of their own, but have no intention of 'wasting' it on outside professional help when they have their slaves (er, sorry, loving children....!) to look after them for free (and because they like being looked after only by their own kin! Understandable, but not sustainable!)

That means you have to be TOUGH. Tough on SS/NHS, and tough, too, on your mothers. They won't probably like it, but er, tough!

Remember, always always always, that YOUR lives (you and your husband's) are JUST AS IMPORTANT as your mothers' lives.

So, as you start getting to grips with getting at least some of your own lives back (you don't have to 'abandon' your mothers, just draw back and share some of the care with professionals)(since your husband's family can't or won't!)(another very common situation on this forum!)(eg, my BIL lives in the USA, so literally cannot take any active part in looking after his mother, which I have to do!), I would say the first steps are this:

- check out the finances of your respective mothers. Will they have to pay for their own outside care (coming in to their homes, or them going into homes) or are they eligible for NHS/SS funded care?

- Sit down with your husband and work out between you what would be the MINIMUM amount of 'time off' you want from your nightmare of caring duties.

-Then double it (!)

- Then start the ball rolling with NHS/SS, or, external private care agencies.

As for yourself, well, the simplest way to start the ball rolling is simply to let your mother's hospital know that you will not be going to her house any more, and it's up to them what they do with her when they want her out of hospital! It won't be easy to 'hold the line' but if they sense weakness, both the NHS/SS and your own mother, will ruthlessly dump her back on you. Her being in hospital is an opportunity to start to change things and get your life back.

All the very best to you - it can be done, it must be done. Plus, on the up side, so many of us here have found that once the 24x7 'burden of care' is lifted from us, and we have (some of!) our own lives back, we actually find that the time we do spend with our carees is much more enjoyable!

Kind regards, and let this be the start of your reclamation of your life. You deserve it, and you need it.

KR, Jenny
Jess, I was in a very similar situation to you 18 months ago. You MUST ABSOLUTELY INSIST on a "Continuing Healthcare Checklist" being completed whilst mum is in hospital, and make absolutely certain you are involved in this assessment. It means that the physio, OT etc, have to properly assess your mum, and ensure that she has a "safe" discharge - this is vital for them too, as there are penalties on hospitals where a patient has an "unsafe" discharge and ends back in hospital very quickly. You have an absolute right to not care, and don't let anyone tell you otherwise. How much longer is your husband going to carry on caring like that? My husband had a sudden fatal heart attack when he and I had been supporting not just our son with learning difficulties but all four elderly seriously ill parents. However much he wants to care for his mum, it really is time for her to have a Needs Assessment from Social Services and he needs a Carers Assessment. Your own health is every bit as important as that of elderly relatives.
Welcome,
Your husband can both work and also apply for Carers Allowance of course, why turn down £62 a week? Even if he earns over the new £110 threshold he can still get CA as long as he subtracts 50% of any pension contributions, NI, tax, and and carer-related expenses, such as hiring a care-worker to give you more time together.
As mum in law has dementia, does your husband have Power of Attorney for her? She is entitled to Attendance Allowance, which your husband can claim if he becomes her DWP "Appointee". She should not be paying Council Tax either, regardless of her financial situation. People with "severe mental impairment" are completely exempt. So if she's living alone, she should not pay anything (whereas normally people living alone only have a 25% reduction.) Just contact the council - they will probably need a doctor's letter or some evidence of the dementia. Do you know what services are available in her area? Maybe there is a day centre or similar. Dementia can suddenly get worse, so it really is time that you at least went to look at residential nursing homes to see what is available - many operate day care, which would at least mean you could relax for a few days safe in the knowledge that she is being well cared for. My own mum was physically disabled, the last year of her life was spent in a nursing home because her needs were simply too great for any alternative care, even live in care. It was such a relief to know that she was well cared for at all times. Many mums forget that their children are grown up, because that's the way they like it, able to control them. Counselling helped me to be proud of what I did for mum, not beat myself up constantly for what I didn't. Most of all, I was encouraged to say "No" to mum, when I was asked to do something too difficult (like relay the lino in the kitchen after first emptying out and moving the units!!!) Maybe counselling would help you feel more comfortable about reducing the hands on care you provide, and moving more to a position of care organiser than care giver?
Jess, lots of advice already so I will just say welcome.

I was in your shoes a year ago in a sense. In hospital it was decided that mum needed nursing care (but no CHC funding). I had to refuse to continue to support mum and threatened to sue the hospital trust if they allowed her home. It was a horrible horrible situation.

I would suggest that you view homes in the area, so that you are as prepared as you can be. Stay firm and we will hold a virtual hand.

Anne x
Wow!!! Just got in from a rather stressful hospital visit feeling a bit peed off and thought I'd read a couple of posts here and Oh Lord, shed loads of support! I'm actually beaming from ear to ear :D

There are so many things I want to respond to and I can't wait to sit down tomorrow and really take in everyone's comments and advice, but for now I'm just going to sleep very happy knowing that you're all there!

Thank you so much xx
Glad we cheered you up!

Yes, there's a huge amount here, so digest it slowly, and maybe make lists?

I know it can all sound quite 'harsh' on our carees, but it really is a matter of trying to take a step back off the 'Treadmill of Exhaustion' so that you can get a grip on the situation, and reach the balance point between time you spend on your mothers, and time you spend on yourselves.

One great advantage you have is that although there are two dependent mums in the frame, there are two carers, you and your husband, and you are team between you and give each other mutual support.

All the best, and hope you get a good night's sleep ready for the next day.

KR, Jenny
As usual for me I'll make it short & simple,

Get your mother into a care home, only visit her when it suits you & get your life back.

Oh, & tell your husband to do the same & if his numerous bone-idle siblings don't like it they can always take over the caring duties from him.

Fortunately for me, both myself & my wife dislike her so-called mother (who said she wished my university-educated wife had been born the dummy instead of her brother) with a vengeance & neither of us would lift a finger to put her out if she was on fire so caring for the mother-in-law will never be a problem.

I might visit her occasionally just to upset her by letting her know I'm still alive.
92 posts