Carers UK Forum

Hi there

I am new to this forum, and i hope I am in the right place! I am needing much help and some advice and hoping that some of the other carers etc on this forum can identify with my/our situation.

My mother moved up nearer to us, (on our request) in 2001 as she has mobility problems and other medical issues, and thought that being closer would be helpful all round. Instead, my husband and I (married 6 years) have totally lost our identities and have been overcome by other people's responsibilities and virtually have no quality life of our own.
We work, care for, eat and sleep and that is it. Both of us are at the end of our tether. Let me tell you why.

Recently, my mother fell and broke her hip (well, that's not quite true.) Mother fell last year (she now says) and about a month ago the damage reared it's ugly head in excruiating pain radiating from her hip area to the point she could no longer weight bear. Subsequently she was taken to hospital where she had a half hip replacement and was in hospital for a month.
It is possible that a hairline crack to her hip in the fall last year caused this all.

Anyway, we were working towards a care package on her release from hospital for the first few weeks on being home, as not only does she have to get over the op but she has severe arthritis in her knees which debilitate her. She point blank refused all care except our care which we felt we could not offer as we work, and we care for her regarding shopping, appointments, cleaning the house etc anyway as a general rule which we have done over the past six years since she has been in the area.

She was released from hospital as the medical profession thought it would be better for her to be at home as her mental state could go into decline (I.E. depression) which would not encourage well-being. Now, every morning and evening my husband is going down to care for my mother to give her breakfast etc and again at tea-time (before and after his work).

I am not allowed near my mother at the moment as I contracted acute bronchitis and the doctor has warned me to keep away, so everything is falling on my husbands shoulders physically and I deal with other things mentally! He says that he feels empty, drained and lost all emotion, ( very similar to the way i am feeling too!)

My mother is mentally blackmailing me on the phone that I am NOT to tell the nurse or doctor that her walking is poor and that she can manage herself etc. I am being 'warned' not to tell of this, that or the other, and I am at the end of my tether. She won't accept meal on wheels or a home help, or even let the nurse see her walking!! She does NOT suffer from dementia.............but is adamant that my husband and I are going to care for her with our lives.

I would have no problem with her if she agreed to be reasonable and flexible, but she is refusing every bit of help other than ours.........and we are both so, so tired.....mentally more than anything else.

What can we do??/

I am becoming quite depressed and frustrated and angry. My husband and I are having silly arguments because we are so tired. We want to help but all we are getting is demand after demand.

Is there someone out there who knows what we are talking about?

Maybe we will be classed as selfish, or made to go on guilt trips etc, but the truth is we don't know how much longer we can cope, without (against my mother's wishes and insuing World War three!) putting a care package in place.

Any understanding comments and helpful advice welcome.

HI there
Becoming a carer is hard enough when you do it willingly, but when you are being blackmailed into it ,I would say it's impossible.

I think you need to sit down with your mum and explain to her the toll it's taking on you and your husband. You need to be tough- even threaten to walk away- unless she is willing to compromise, and accept some outside help.

I also think you need to get the GP onside, stressing the extra expense involved if you and /or your husband crack under the strain.

You're not being selfish- your mother is!! She needs to be made aware that unless she accepts help from outside-- she is in danger of being left with no help at all.
Do not let her put anymore unbearable strain on your marriage- or your state of health.
Regards Ken

Thanks Ken! I know what you are saying is all true! I have often thought these things, but then went and questioned myself and thinking that it's maybe me who is being unkind. I am glad there is someone who has some understanding and i will take your advice on board.
This is a hard time for us both.

Hi Sarnia2,

I agree with what kenm said. Don't for one moment think you are selfish, I know it will be hard for you but you need to toughen up with your Mum or you're going to end up totally resenting her. Have you actually told her how you're feeling? Maybe she thinks you're coping ok.
Tell your Mum she now has to accept help from outside and if she still doesn't want it, just go ahead and do it anyway. I work in home care and in my personal experiences I have always found that it's the women who have a problem with carers coming in, they are too proud to admit they need help and they feel we are taking over what they should be doing, even though they're not always capable of doing so, but after a short period of time they do get used to us and look forward to someone different coming and having a bit of a chat. These women can also be very manipulative and making their families feel guilty especially their daughters. You say you're having slight quarrels with your husband now, if the stress of looking after your mum continues you may end up separating and making yourself ill and you'll be no good to your mum then, so you really do need to get something sorted out asap.

Hope this helps a bit and good luck

Hi Sarnia2.

EVeryone has said it already, but you have to be strong for your own sakes.

Legally and morally you have the right to think about your own needs, and if you cannot provide all of the care your mum needs, you can - and should - say so. Your mum has two choices - she accepts it or she doesn't. You need to explain that you cannot keep up the support she needs without ending up ill - or worse- yourselves.

And then where would she be?

But before you do this, ask her a question: is she frightened of being put in a residential home if the authorities think she cannot cope? I believe that is what is going on here: explain to her that the last thing anyone wants is to "put her away". You'll do what you can to help but you cannot do it all any more.

Hi all,
I so appreciate your advice. I know I need to toughen up...and I am fearful of the outcome, I guess.
My hubby was a carer years back and he knows the situation and worked with that situation before but never 'inside'; always on the 'outside!' So , he too feels really vulnerable as well.
He went to see mum tonight and she was saying that she can now get her own breakfast and lunch, and she does get about the house...very slowly. However, it's always at the back of our minds as to whether she is really OK.
I think sadly, I have already got to the stage where I resent my mother; and I hope it's only temporarily...........as it's a horrible feeling.
Mother has always had a fear of going into a residential home, and we have always said we won't 'put her away' but it's getting her to understand that to keep her out of that situation is why we wish to get a care package going. Obviously, for us too, so we can remain sane.
However, my mother is the most unreasonable person to sit down and talk to, as when she feels she is in a no-win situation she completely shuts down and refuses to hear a word we say, and then we get stuff like 'after all I've done for you' or 'I've been good to you.' These words are always harsh ones, and it's whether it's worth all the hassle or not.
I am so pleased that there are folk who are understanding. I really beleive that it has to be experienced to know how difficult it can all get.
Like my hubby says, 'It's not that you don't care, it's that you are unable to cope.'

Hi there Sarnia 2

All the replies you've received so far contain excellent advice, which I'm pleased to see you've appreciated and taken on board.

I too care for - and have done for 9 years - an elderly disabled mother who refuses outside help and is manipulative. Please believe me that it only gets worse the longer it goes on! And you're right - the resentment sets in, then the caring from love stops and the caring from duty begins. And then the nightmare of guilt sets in.

So please take all the wonderful advice offered here and keep your sanity and your marriage and your LIFE.

Best wishes,
snoopy

Hi Sarnia2.

It's not easy - good advice rarely is easy to follow. Even dodgy advice isn't!

Some years ago my wife and I (we care for our autistic son) invited my parents to live with us because of the difficulties they were having coping.

4 years afterwards I had to ask them to find somewhere else to live. It's one of the hardest things I've ever had to do - but my wife had tried to commit suicide and there was no other way. I almost left it far too late in the hope that the situation would improve.

For a while, life was even more unbearable while the hurt and anger sorted themselves out.

Now we get on a lot better with my parents - because we all now recognise what we were putting each other through.

All I can ask you to do is to think long and hard about it - and weigh up the potential cost before deciding what to do. It still won't be easy, whatever you decide, but at least you'll know what you're facing.

I am overwhelmed by the posts from all of you. I obviously came to the right place. it also helps me to understand I am not alone, and that there are other people out there who have or are going through the same situation (in principle..if nothing else).
Charles47- we took mum into our home in 2001; a larger place and a bungalow so every area was on the 'flat' for her, only to be informed 4 months later that she wanted a place of her own.
My husband especially, was gutted, because his suggestion to bring mum into our home to care for her had not worked and he took it really bad.
We knew that even then, eventually we would have to face what we are going through now, except that it is slightly quicker than we thought and it certainly does not make it any easier.
We will have to sit down and evaluate our lives and see what we can come up with.
Any more support from anyone at all, gratefully received and will all go to helping us to deal with the situation we face. Thank you all so much.

Hi there,

I agree with all that has been said previously, but I wondered whether you were aware that you, as carers, are entitled to a 'Carers Assessment' from the local authority social services department?

They will visit you and assess and understand your situation and its effects on you both, and what can be done to assist you. You do not need your Mothers' permission for this Assessment. It may be worth making an enquiry?

Good luck.

Clive