Many years caring

Tell us a bit about yourself here.
Deborah, I think that something that will be hard for you, personally, is realising that alas nothing will change unless YOU make it happen!

Right now, everyone has exactly what they want! (Except you and your husband).

Your mum lives with you and that's what she wants

Your seven siblings are all mum-free and can get on with their lives without troubling their carefree little heads with anything so bothersome as an invalid, wheelchair bound mother.


Time and time again on this forum we see put upon family members who are being shamelessly used and exploited and taken advantage of (often by their own carees, alas) by the rest of their family. The ONLY way for you to be 'free' is to take decisive action, and not just, I'm afraid 'talk' to your siblings ,but TELL them, and your mum too, that you have HAD ENOUGH!

It really doesn't matter now what your mum wants, or what your delightful siblings want - it's what YOU want. YOU have been ignored in this for years and years (possibly even at the cost of your first marriage!), and it's time to STOP.

DO expect 'push back' .This always happens when those who have been very comfortable thank you with the carer doing all the care, suddenly find the put upon carer 'biting back'! They will come up with every excuse under the sun to say oh, we can't help, so sorry, you're stuck with mum, byeee! And your mum will come up with 'Oh, I don't want to go into residential care thank you! And where';s my dinner by the way, you're late!'

So you WILL have a battle on your hands. It's great you have your husband with you in your corner, and your children too.

I'm afraid it could well be that IF your siblings refuse to take on their fair share of the 'burden' of your mum's care (and however much you love her, the CARE of her is a burden to you!), then residential care is the only option. You just can't go on the way you are. Nor, indeed, should you. It's just not fair on you.
Hi Deborah
Wishing you some stregnth to make some decisions, I would agree that the TIA is a monster big warning and you won't be able to look after mum if you go on to have a bigger stroke.
Not sure how much if any help you are getting from outside carers but if mum has no property or major savings she will be entitled to some care visits funded by social services, so if you haven't already done this make sure she gets a Needs assessment immediately and let SS know that the care you have been giving has taken its toll on your own health so jump up and down for lots of help. The emergency respite is a good idea and may get your mum to appreciate you are not well- you say she is mentally with it so don't hide your own TIA and tell her it was a mini stroke if she hasn't heard of TIAs.
As a side issue but perhaps part of the greater plan, do you like the stressful job? Is it worth changing paths? Remember that TIAs are often warnings that you are in danger of strokes so please don't stay at work in the same job for the wrong reasons, think carefully.
I just hate that phrase "put into care", because it may be what someone NEEDS, obviously not wants. But it's NOT mum's choice actually, you can choose not to care and services can be arranged for her. Please don't end up leaving your husband a widower, that's the brutal future he might be facing. Nothing is worth that price.
Go and have a look at the homes near you, ask Social Services to do an URGENT Carers Assessment.
It's YOUR Needs that are most important now.
Sending you strength Deboroah.
It's so hard isn't it, but everyone's right, your health must take priority now. I know it isn't easy when so many years have been spent putting someone else first.
Deborah, hi again

Sorry if it sounds like we are all 'ganging up' on your mum! I know how hurtful it can be when others criticise someone you love, but, all the same, sometimes 'outsiders' can see things more clearly (It took my SIL to make me see my own mum in a 'new light' that told a different narrative from the 'I am victim and suffer dreadfully!' that I grew up with, and thought of as 'the truth')(I didn't take my SIL's opinion as totally true, I still think she was too harsh on my mum! But I did start to see my mother from a different angle so to speak, and it made it easier for me to 'step back' from my 'devotion' to her to some extent).

I do think one of the most valuable things this forum does is show carers who have, perhaps, been, or become, extremely isolated and 'trapped' almost in a particular mindset and situation, that there are other ways of looking at the situation, and other options available, however 'unpopular' those options might be with everyone except the carer!

Families very, very often cast each other in roles. I get the feelings, as I said earlier, that you, as the youngest, were cast in the role of your mum's carer. In a way, all the older siblings were able to 'escape' because there was always YOU, the youngest, still 'at home' to take care of your mum. And of course you simply saw that as 'normal' - indeed, you saw it as your 'duty'.

I do think that Henrietta's point about how much outside care you are getting (or not getting??!!!) is crucial. Again, carees can become very 'selfish' about only wanting their family carer to do any of the care, irrespective of the toll it takes. That's something that family carers really do have to stand firm on.

I definitely agree that some emergency respite care is now urgently needed for you. Giving you a couple of 'mum-free' weeks will enable you to get all the medical test done that you need, and give you and your husband (and children) time to think and talk through the changes you need to make now. You may, indeed, find that even if it's not possible to 'endlessly rotate' your mum around ALL her children, that even if only three or four of them shared the care with you, that that would give you your life back, take the stress off you, and give you enough breathing space.

What have your siblings ever said about Mum's care? Do you even discuss it, or has it always just been 'assumed' that good old Deborah will do it all as 'that works out best' (ie, for everyone but you!)
You are not pathetic Deborah, you are a wonderful lady, who has been doing a grand job looking after her mum for the past 18 years at her home, and has suddenly, suffered an event, which fortunately for her and the ones she loves, was not that life changing event we all dread, but understandably, it has left her feeling vulnerable, and overwhelmed.

Take a weeks break on your own, change of scenery. Get away from everything and allow yourself the time to let everything sink in. Your hubby sounds like a great guy, let him hold the fort for a week, after all, these are exceptional circumstances. It will all be the same when you get back, but at the same time very different. Amazing what a week away does for you.

Getting you away is by far simpler than negotiating some respite for you mum. The last thing you want at the moment.

I also suspect you have spent the last week being supportive to the hubby and kids, as mums do. Admire your reselience

Deep down inside you probably do know what needs to be done, but you will need all your strength and a clear head to deal with it, so let it wait until you are good and ready.

Be strong for you.
Would it help if your family all wrote down together the things you all do for mum? What must be done by you? Nothing.
If she needs someone to do her cleaning, she needs a cleaner.
If she needs someone to do her garden, she needs a gardener. None of it has to be done by you, you are really just the most convenient pair of hands.
If mum has no savings, did you know that all the care she needs will be funded by Social Services after a Needs Assessment, maybe with a small "client contribution" from her disability benefits?
What would happen if you died after a stroke? Mum would still be there, still needing care, then she would have no option but to either accept outside care or residential care. Surely it's better that she accepted outside care while you are well??!!??

Her choice is not whether you care for her any more, but whether she has outside carers, or residential care.
If she is sociallly isolated, she might actually enjoy being with others to talk to.
Deborah, what do you think of what we are saying?

I'm asking because I do understand that your first reaction to all this here is to think 'They don't understand! It's impossible to get my siblings more involved! It's all impossible! I can't change the fundamentals!'

That's a VERY natural reaction - and yes, ALL change is 'chary'....let alone change that requires you to 'rock the boat' (and by moving out of your current 'Good Old Deb Will Do It All!' role, will most definitely be rocking the boat!).

Think of yourself like a beast in a corner - there are 'predators' all around you, keeping you backed into that every tightening corner. All your siblings, and of course your mum, ALL wanting you to 'keep struggling on' ....for THEIR sakes, NOT YOURS.

I know it's hard and horrid to think of one's family being 'the enemy' but right now they are. They have only two possible roles - either they are going to HELP you, or they are going to HURT you.

If they HELP you, they will do the following - the siblings will finally get off their backsides and take on, collectively between them,, enough of your mum's care to make your life worth living again, AND your mum will agree to this!

PLEASE don't think this is impossible. Nothing is impossible. It's difficult, and challenging, but you have your new man, and you have your adult children, all rooting for YOU, all wanting YOU to have a better life. YOU are THEIR priority, not your mum, and certainly not your siblings!

Of your many siblings, are there any that are 'more likely' to be approachable, and see things from your point of view?