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One year on and still learning - Carers UK Forum

One year on and still learning

Share information, support and advice on all aspects of caring.
My mother has been home one year following her brain haemorrhage. As I have explained the BH left her physically and mentally damaged. She lives alone with 3 care visits and lots of popping in from family ( well me mainly). I have moaned a few times on here about how I struggle ( don't we all) and how yes sometimes I do feel resentful ( again I don't think I'm alone here). The forum however has been a lifeline in many respects. I have learned quite a few valuable lessons since being a member like - learning to say no and set boundaries, sort her house out to make it easy for me to handle, stop feeling I am responsible for her happiness etc etc. She can be difficult and prior to the BH we were not that close. She was very independent and could be a negative person never encouraging. I am still realising I have a lot to learn and one thing I need is a thicker skin. Family members who promised the world when she was in hospital have done very little to help. Every conversation I have with my mother is about my sister - much younger with a very young family. How is she, where is she, does she need money, blah blah blah. I struggle with this especially as my sister only does the minimum because of her other commitments. I am being treated for depression and sometimes the negativity that can come from caring makes me worse and no doubt is not great for my mother either. She just phoned me now asking to go to town, there is a hurricane here and it's pouring with rain, I have to pick my sisters children up from school and take the cat to the vet. But I'm mean and selfish. I struggle with that too. I am awaiting surgery for a potentially cancerous situation - it is a big op with a long recovery. I have put it off for 3 years because of family commitments. I am now scheduled to have it in May - my mother said I shouldn't have it as if I get cancer they can cure it so why am I bothering. Subject changed very quickly by her. I struggle with that too.
Sorry I am just having a moan. The stress of the past few years is having a ripple effect on me my husband and out immediate family. My husband is very resentful of the situation - I was medically retired just before this happened and he went part time as we were going to finally after years of my illness, have a life. Then wham. He has gone back to work and is rarely here - he cannot cope with it.
Thanks for listening - no need to reply - just needed to off load.
Hi, well, I've heard quite a few definitions of 'mean and selfish' but I can most irrefutably say THEY DO NOT DESCRIBE YOU!!!!!!

OK, I'll call it the way I see it from your post (others may see it differently, of course, and this is just my untutored personal opinion, from just a.n. other person, no special skills or experience, etc, just another carer)(with a LOT less on my plate than you!)

Right, so your mum needs a degree of care for her physical and mental conditions following her BH (and possibly from her general old age as well and any other ailments not related to the BH?)

Are you the one organising all the care - the caregiver? Sorting out visits, her house, etc etc etc? Plus (of course!) doing a lot personally yourself by way of chores, visiting, taking her out, etc etc.

What, exactly, does your sister do, if anything, for your mum? If you, say, divided up what you do for your mum, adn what your sister does, how would it split, do you think? Not 50:50, clearly. So 60:40, 70:30, 80:20 or 90:10 (or less!). Spread over, say, a month, and then over six months. I take it whatever she does it probably is unevenly proportioned because of the school holidays.

Do I take it that the reason the split for your mum is not 50:50 between you and your sister is that your sister has young children (does she work as well, or is she a SAHM - stay at home mum?). Is she married/with a live-in-partner in full time work? So your sister's days are fully occupied, or far more than yours. You were, I think you said, retired due to ill health? (and have some time with your husband to yourself!)

Something struck me quite forcibly when you said you were about to go out and pick up your sister's children. Er, WHY? Why, if her children are healthy, and she and her husband are healthy, are you picking up her children, when she does so little for your mum? I don't get it! Maybe there are extenuating circumstances around your sister you haven't mentioned (eg, single mum and waste of space ex etc), but the last time I looked, people that choose to have children also get to look after them themselves without expecting others to help!

Your sister's children are her responsibility, not yours. Your mum is the responsibility (if she is!) of BOTH of you!

I've seen 'older sister' syndrome before when it comes to caring. My friend with a younger sister and a father they 'swap' between them says her younger sister resents the split, and because she is younger, and 'busier', simply doesn't want the dad as long as the older sister has to have him! Er, WHY? Because younger sisters so, so often 'get away with things'! (Not always, Bluebell here, on her threads, has an older sister who escaped to leave BB to cope with the gran who brought them up!)

And if your sister isn't pulling her weight, indeed, dumping some of her childcare duties on YOU!, then I think we can probably identify the villain of the piece - because you've shown us already. It's your doting mum who thinks of nothing but her younger daughter, and so, so little of her older - so little, in fact, that she can't even bother to be concerned not just about your state of exhaustion and stress, but even that you are fearful of cancer! Honestly, what kind of mum is that????

I'll answer the question - the kind of mum who takes one daughter for granted, the daughter that actually does all the work of caring, and only fusses over the daughter that does far far less, if any!

I'm very glad to read that you have learnt to set boundaries, and say no, etc etc, because that's vital, as you already know. I'm afraid I would simply draw back even further. Your mum is not the only person in this equation - there is YOU and there is your husband.

If you draw back more from your mum, simply do less, even, perhaps eventaully, to the point of doing nothing at all, then I think you're mum has simply contributed to her own situation by not appreciating what you've done for her.

I know pulling back is hard, and it is also expensive, if outside carers have to take up the slack. But you've said your mum worries about your daughter's financial situation, which indicates she has some 'spare money' - enough for her younger daughter, therefore enough for more carers!

Do you have any days off a week? One carer I know says she told her mum she would always take Wednesdays off, adn that was that. No look in, no pop in, nothing. Mum didn't like it, but it saved the carer's sanity (not her marriage, alas....)

Have you and your husband had a holiday this last year? If not, time to book one. Time to book respite care for your mum, if that's what it takes.

I know I'm doubtless just saying things both your husband, and yourself, have said to you, but do here it from a third party, me, as well - and I'm sure others will urge at least a respite break for you, if nothing else!

As for her negativity - it's her choice to be miserable, leave her to it! Sounds like that's something you've accepted, so well done. Iwouldn't worry tuppance about whether your own depression is making things worse for your mum! I would only worry about myself! Your mum has had a great big slice of you already this last year - no more!

Oh, and don't for heavens sake take her into town today!

All the very best, and I do hope you can continue the good work to lessen the burden of your mother in your life. And all the very best with your check up.

Kind regards, Jenny.
hiya. I am not very adept at giving hugs to strangers. But if you don't mind... I am sending one to you today.

One day at a time. You will get through this. X
The one thing I would say is that as you are scheduled for a big op in May, now is the time for you to be inputting less and less in the help for others and make it clear that YOU are the one going to be needing help.....in the very near future.
As you've put this off for 3 years, it's time to put you first.
I quite agree myrtle - you took the words out of my mouth.
You need to tell your sister that you are no longer available to pick up her children and your mum that you will not be able to take her shopping etc. They need to find alternative arrangements before it becomes imminent.
Do not put off your op, and do not be tempted to "pick up the reins" again afterwards until you are fully recovered.
Thank you for your replies Image
Jenny - thank you. I have to stress at first there Is an element of cognitive damage so she doesn't really get things if you know what I mean. We went shopping yesterday and she wanted to buy fence panels on the basis when she is better she would put it up. She is not right so her judgement is swayed - I have to defend her as I feel sorry for her as much as annoyed with her, I'm getting used to my 'new' mother. Yes I would say I am the caregiver - the sorter outer, cleaner, laundry, shopping, appointments and outings. I would say the ratio would be 70/30. My sister is different to me. She does not have a partner living with her and the children are only 5 - she works full time and her hours are erratic. She has no financial backup . I have always been more of a mother figure to her as there is a big age gap of 15 years. I love the children like my own and so I find it very hard to say no to them - but I do set boundaries as yes she would take advantage. Younger sister syndrome has always been an issue.
Holiday - yes on the cards - now essential.
Operation - massive problem for me - I will explain more later as I would value your opinion.
I will reply to everyone else in a bit. Power cut Image.
Power is back! As I was saying I come on here and moan but probably wouldn't change anything. So my husband says - stop moaning then. I suppose he has a point but it's nice to just vent feelings with people who have been where I am now. My mother has always been a cold fish but a good mother is many other ways so I don't want everything thinking she is a bad person because she isn't. But I don't find this easy especially as my husband can be awkward .
The operation - I have had countless surgeries and now there is something on my ovary that is being watched. They want to do complete hysterectomy plus they would remove my rectum at the same time ( I already have lost my colon owing to chrons disease). It's a big op likely to have complications and I am really nervous. I keep putting it off because I just cannot face having such major surgery for a theoretical cancer risk but conversely I am terrified of something developing. It's an impossible decision but it is getting me down big time and maybe that's adding to my depression.
To all the lovely ladies who have replied thank you. I am trying not to overthink and take one day at a time but sometimes it overwhelms me.
Thank you all again Image xxx
I won't do a big long screed this time (perhaps later!) but just wanted to say at this point that I had a total hysterectomy a few years ago (again, like you, for a dodgy ovarian cyst) (having lost my own husband to very late diagnosed cancer earlier, plus that my paternal aunt died of OC, I wasn't about to take a chance!) - I sailed through it! Ok, maybe I was lucky, and I'm a good healer, etc, and maybe I didn't care about the instant menopause as I was widowed by then anyway, but it really was a doddle (OK, maybe I had a brill surgeon too!). I've never regretted it, and consider that I was fortunate to have found out about the dodgy cyst, and even if it had never turned cancerous, I know that my life could well have been on the line. OC is NOT to be ignored or taken any risks on. Survival depends entirely on early diagnosis. In my personal opinion I would say your op is exactly the sensible precaution to take. When it comes to cancer, the only sane decision, to my mind, is 'Better safe than sorry'. If, for example, you had not had this op, and then got OC, you would berate yourself for ever.

I appreciate the other half of your op is a lot 'messier' than the hysterectomy (which just removes things we don't need and can live without!), but am I right in thinking that the former op on your intestine has done the 'worst damage' already??

Finally, I completely agree with the others - YOU are the priority right now, not your mum, or your sister, and you need to clear the decks of all other commitments or claims on your time.

As for your mum's reaction to your forthcoming op, that you mentioned earlier, well, perhaps just as well that she has impaired cognitive function, because otherwise it's a pretty damn unforgiveable thing to say!

All best for now, Jenny.
Somehow reassuring Jenny that you have had complete hysterectomy - even more so that you sailed through it. The rectum ( hate that word) well yes is a bit tricky - I already have an Ileostomy though which means my colon has gone and I have a bag. I've had that for over 20 years so my rectum is also a bit of a ticking cancer time bomb as long term inflammation such as this can lead to cancer. I've put the op off because at the moment it's my choice - similar analogy to the women who have their breasts removed because of the brac1 gene. My family, and previously work commitments stopped me doing anything about this surgery and i do get regular scans. But then I lost my job because of my chrons and then as you know mother had BH so life changed.
I know I must do it as if something does happen I will berate myself for ever, you are right. But I'm alone with this as we are all seemingly going from one crisis to the next ATM with family stuff and so it's hard to focus on me. Glad you sailed through it though that's great to hear. I am confident in my surgeon he is very good - well they both are .
Thank you for your response xxx
WW - how about if you look at the upcoming op as the turning point in your life? You've spent so long dealing with 'other people's needs, now it's time to focus on YOU. And, hopefully, with your upcoming op, and that all those who need you will just have to do without (yes, they will!), once you're recovered you do NOT go back to the 'old you', the one you are now, running yourself ragged!

My point is - if your mum and anyone else making calls on your time and effort, can cope while you're in hospital and afterwards (and they will HAVE to!), then that proves they can cope without you - which allows you to finally get your own life back AS YOU DESERVE!

All best, Jenny