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Many years caring - Carers UK Forum

Many years caring

Tell us a bit about yourself here.
I'm 48 and this is the first time I have ever reached out in any group/forum although I have been sole career for my Mum for 18 years and she has lived with me for 10 years. My previous marriage broke up (not solely because of caring responsibility) but both my children have had to give up so much during their formative and teenage years. I am recently remarried but my husband works away and before we got married we lived together for 5 years and he worked close to home and he was so supportive with my Mum taking on a lot of her care but now although I know he loves me I feel like he is happy to not have to deal with the day to day issues of caring. Both of my children have told me they have had enough of giving up time/life for my Mum. I have managed to balance a really demanding job with caring but recently have felt really depressed like I am just going through the motions.I know it is awful but I just don't want to do it anymore, I suffered a TIA this week and after spending the day in hospital undergoing tests I came home to demands from my Mum about dinner being late and other needs. I feel really pathetic but I don't know how to go on.
Hi, and welcome to the forum.

You've been caring a LONG time. What is actually wrong with your mum? She doesn't sound very appreciative of all that you do for her!

Your own health is VERY important - and it sounds like you are under a LOT of stress right now. The TIA is a 'warning shot' - you must heed it!

Is it time for your mum's care to be done by 'someone else' (including possibly a care home?)

Tell us a little more about her care needs (not necessarily the same thing as her care 'wants' by the way)(that comment about her wanting her dinner, despite you having had a health issue of your own, for example!!!!!!!) and we can collectively maybe point you in the direction where you stress levels drop, and your quality of life improves.

YOU have rights too - never forget that!

Cheers for now, Jenny
PS - you don't sound pathetic in the slightest! You sound like you've given up a LOT for a LONG time for your mum.....(who doesn't seem, as I said, that appreciative of it, or you!)
Hello Jenny thank you for responding. My mum has progressive Cerebellar Ataxia which has resulted in her being wheelchair bound but mental faculties are OK. I am the youngest of 8 children but I live in South of England and the rest of my family live in Scotland and I don’t think they understand how difficult it is and my Mum doesn’t want to visit them because they don’t have the facilities to cater for her needs. I have always felt it was my duty to look after her but I’m just struggling with it all now.

Your children should come first, before mum. Mum may be disabled but you CANNOT carry on as you are, the TIA was a warning you cannot ignore, and you've now found out how self focussed mum has become! How old is mum? Does she have any outside care at all, savings over £23,000?
It isn't your duty.

TIA is a warning. Please listen to it. Even if your children ARE older they still need you. More so than your Mum. Things have to change. You also have a right to a life too.

I would think at the very least your Mum needs to go into emergency respite care whilst you recover and work out what happens next. Social Services should be able to sort this for you. You certainly shouldn't be going home to make her dinner!
Hmm, the set up sounds a bit 'Victorian' to my mind! As in, as the youngest, you have been 'volunteered' both by your older siblings AND your parents (I take it no dad any more?) to be 'the carer'! Great for them - not for you.

I definitely echo the NO IT'S NOT YOUR DUTY! to take on the SOLE CARE of your ailing mum. Disgraceful to my mind that your siblings do sod all (how nice for them!) (Oh, and I bet it's VERY convenient for them not to have, oh dear, any facilities at all for having their mum to stay - bet that wasn't accidental!!!!!)

All in all, it's time to call time on your current way of life. The TIA is DEFINITELY a warning - at 48 you should be in perfectly good health. An early stroke is clear, clear indication that all is dangerously not well with you. Has your blood pressure been regularly monitored, and your heart health evaluated (eg, with an echocardiogram, an ECG etc etc)? Hopefully this is now being done, thanks to the TIA at least. Will you be put on medication, told to change your lifestyle to lower the stress?

The stress, to my mind, is clearly coming from your 'ungrateful' mother. (How old is she now?) ie, rather than your job (however demanding). For example, if your mum were simply 'not in the picture' would the demands of the job STILL be stressful, or could you manage it perfectly well, providing you had an 'easy' home life to come home to (rather than a mum waiting for her dinner).

I know I sound a bit harsh about your mum, but the point is many folk who are invalids do become ruthlessly self-focussed and even selfish. I guess they both take the care they are provided with for granted, and also probably feel 'resentful' in a way that it's OK for you, as YOU are not wheelchair bound, so you've got 'nothing to complain about'! I wouldn't call it self-pity, but it's heading in that direction.

Since your mum is of sound mind, there's no reason why she should not be made to understand that actually you were NOT put into this world to be her lifetime carer, but that you are, in fact, entitled to a life of your own, and her care is NOT your duty.

I would suggest it's time for you and your husband, first of all, to have a good long honest talk to each other about 'The Mum Problem' (and she IS a problem now, as she has, in effect, caused your TIA).

Look at the options -

(1) Things continue 'as is' with you at dangerous risk of another more serious and possibly even fatal stroke.
(2) You give up your job, to 'free up' more time for your mum (ie, reduce one source of stress to make another one less onerous). BUT, with giving up your job you lose both the salary AND, perhaps even more importantly, your 'escape route' from your mum-all-day-all-night and your self-esteem (never underestimate how 'grinding' it is to be 'nothing more' than a full time carer) and a degree of 'social life' (being 'trapped at home' 24x7 as a carer is not fun either)
(3) You start 'sharing the caring' with the rest of your siblings (see below)
(4) Your mum goes into residential care/assisted living of some kind

Personally, I think it's either options 3 or 4 that are the only ones now.

If you go for 3 (as I would argue is ENTIRELY your right)(see below as well), then you need to work out what needs to happen - eg, how much adaptation do their houses/apartments need to be able to facilitate your mum's needs etc, and also how to apportion the amount of time they 'take on'' their mum. An equal division would see each of you having your mum for only about 6 weeks of the year if my maths is correct!) (definitely less than two months).

Backing up a little, what has been happening in terms of money? What money does your mum get, and how much are her savings etc etc. How large is her eventual 'estate' (ie, when she dies). All these are important questions because I very, very much hope that she has been 'paying her way' while living with you and that you are NOT 'subbing' her in any way. (Especially if your wonderful siblings are not putting in a penny on their part!).

If you go for option 4, then your mum's savings/income will be crucial in determining how much she can pay, or have SS/council funding, and so on.

Whatever happens, it's time for a Big Change - as we are saying, first you have NO divinely appointed 'duty' to accept the role of carer while your sibllings get off scot free (literally, if they are in Scotland!) and second because the TIA is a clear warning to you that Enough is Enough.
My lovely husband had a massive heart attack and died at the age of 58, after a few years trying to run a business, care for our son with learning difficulties, and two ill aged parents. Do not let this happen to you!
Hello Jenny, thank you for your response. To answer your question my Mum has no estate but does receive disability and mobility benefits, my husband and I are lucky enough to be OK financially so this is not a problem. To be honest my husband and I have talked about it and he is worried now that he may lose me at the expense of my Mum so I know that I need to do something. She wouldn't go into residential care, I will need to talk to brothers and sisters. I'm sure many people have the same issue of dealing with the guilt of considering alternative options and I think that is what I am struggling with just now. Your response made me feel like I wasn't just being selfish so thank you for taking the time to write it.
Bowlingbun so sorry to hear about your husband.
Hello Sally, thank you for your response. I don't think I could put her in care but I am trying to look after myself more and thinking of longer term solutions for her care.