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Where did I go wrong? - Carers UK Forum

Where did I go wrong?

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Hello,

I am a new member and in need of your advice.

Mother came to live with me in 1985. I have been her carer since 1994, an up hill battle. Her bouts of temper bring back many painful memories for me. Up until a year ago I was able to jump in my car and leave her to it but with onset of dementia I am trapped. So, when things get too much it is up the greenhouse stomp around say the most awful things get it out of my system and then I feel better.

I care deeply for my mother. I just about cope with the dementia but cannot cope with the double incontinence. She flatly refuses to keep her pad on at night saying they make her sweat. She is turning our home into a sewer. Take the typical morning her bed is saturated. There is excrement over the bed, carpet, rug and chair. She also takes clean dresses, cardigans and underwear and covers them in her waste. When I get angry she tells me to shut up and get it cleaned up. I bought a commode, she said it was a good idea because the bathroom floor tiles were cold. (She forgets to put her slippers on) Great I thought, I am onto a winner! Short lived, she will not use it and for some reason, best known to her, will no longer use the bathroom. Where do I go from here???

I told my care manager I felt I was reaching the end because of it but allowed myself to be talked into continuing. I thought I was a strong person, turns out I am not.

Well, it came to a head last week. I told the care manager it was the end for me. I could not believe her response, she went off alarming saying, ‘she could not frogmarch mother out kicking and screaming’. Then, ‘are you going to pay for her care? you have property’. She said a whole lot more but must confess I did not take it in. I was trying to explain but she has this very annoying habit of talking over you.

In the end, I managed to tell her that I would rethink the whole situation. With that, she barked she would come to see me at the end of the month, as planned, with a view to closing the case. Not knowing what that meant I went into a blind panic. Next thing I knew I came to on the floor. I rang my OH who got me to the GP. Nervous breakdown is all I heard. No,no doctor, not me. It is lack of sleep, totally fed up with the mess and the inconsistencies of my care manager. Next, he was out of his office, on returning he said he had faxed the Social for emergency respite care. I should have felt relieved but was filled with a feeling of fear.

Well hell happened, one very irate care manager phoned accusing me of extending the care plan and that she had received Dr’s fax and was not interested in what he said. I don’t know why/what happened, apparently, I was shouting at her to leave me alone. OH tells me he grabbed the phone and put her straight. It’s frightening, I don’t remember.

Mother is in respite now. I wander around not knowing what to do with myself, more to the point, don’t want to do anything.

My care manager did not ring as she said she would. I should be relieved but this action only serves to prolong the agony for me. OH says he is not going to let her near me. I am terrified. Not like me at all but then, I do not recognise me anymore.

Deep down I don’t want mum to go into a home. My family and friends are now telling me I should. Do they see what I can’t? After 23 years of doing my best I feel a total failure. Why can’t I find a way to cope with this?

Mary
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Hello Mary
I'm so sorry to hear of all the troubles and difficulties you have been coping with for so long.
Regarding your Mums care you have been struggling alone doing what would have exhausted 3 Care Workers in a residential/nursing home. They could leave at the end of their shift, your shift never had an end. It is no surprise to me or I'm sure others here that working under this pressure has made you ill.
You haven't done anything wrong Mary. You have done your best for many years. The Care Manager should be utterly ashamed of herself for not listening to you. It sounds to me that the Care Manager is thinking more of obtaining a pat on the back for keeping her care budget down than she is of actually helping you to manage your caring role.

Your family and friends can see that you are exhausted, and that looking after your Mum is more than is reasonable to expect of one person to manage and cope with. Your health is important, your future is important, you don't have to sacrifice yourself on the alter of caring for your Mum, it isn't entirely your responsability.

I hope you feel better soon Mary.
Love and best wishes
Cheryl xxx
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Hi Mary,

Firstly you have not failed anything and are not in any way a failure.

Secondly insist somebody listens , ask to speak to the care managers "manager" if necessary and insist on some help even some immediate respite which is what they would need to do if you collapse with exhaustion or another illness in an emergency. I know it is something lese to do but try and record all you can re the whole conversation on paper with dates and times. Any further communications from either side again keep a record of it all in case you need to/feel up to complaining later on.

You can have help and are entitled to help and so insist upon it so at the very least you can have a couple of weeks break.

Your income and your property are nothing to do with who is going to pay for the respite.........your Mother has income even if it is the bare minimum and it is her care not yours.

Be strong now and demand the help. Seek support for a carers assoc helpline or centre if needed.

Don't give up you have done nothing wrong...........oh and before you have your Mother home from the respite they need to put a full care package/plan in place for your Mother and you ned to have a carers assessment too!

Good luck!

Chris
www.mypeggypeg.blogspot.com
Morning Mary,

You have done nothing wrong Mary.It is the system and your care manager which has let you down.
You have cared for your mam far longer than some would have been able to cope with but if you had had the right support it may have kept this situation away.
Your mam is being cared for now, so it is important you use this time to think of your own health so that you can recover both emotionally and physically.You must be totally drained.
For once you have to put yourself 1st and this is maybe what your family and friends can see more clearly.The situation as it was cannot be allowed to continue.

You can ask for another care manager or even the Head of the Department to look at this but I would also think of trying getting an advocacy worker who can support you through this.Your local carers centre should be able to give you some details.

CarersUK also have CarersLine which can offer advice on any issue to do with caring and disability such as benefits, hospital discharge, employment issues, making a complaint, getting a social services assessment and much more.

The service is free. Unfortunately the service is currently only open for 2 days a week. However we do have an answerphone service if you leave details an advisor will call you back.

Telephone 0808 808 7777

Open Wednesday and Thursday 10am-12pm and 2pm-4pm

Like Cheryl and Chris have both said too,none of this is your fault.You should be proud of having coped so long under such extreme circumstances.You have found us now Mary and we will all help support you as best we can.

Love
Rosemary
x x x x

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Welcome to the forum Mary, I see you've already had some excellent advice from other members.

My cousin had a similar situation with my late aunt, the decision to put her into respite care - which then became fulltime care - was extremely difficult but was the best for everyone concerned - you've obviously been badly let down by the system and as a result your health was bound to suffer, please don't think you went wrong.

Pop back when you feel able to let us know how you and your family are doing, we're always here if you need support or just a chat.

Take care

Paula xx
Hi Mary, first off welcome Image
Second, you have done absolutely nothing wrong, you aren't a failure and have coped for a very long time with what seems to have been worse than useless help, from someone who should have seen that it was too much without outside help.
I can't add any more to the advice that has already been given, but am sending you a big (((((HUG)))))
Hello everyone

Thank you so much for your replies, kindness and advice. I did think this situation could not be the norm and should not be happening. It is good to know you are there and I have NOT, totally, lost the plot – the first step to my recovery!

Anyway, OH came home last night and informed me he had rung the care manager, and subsequently, went to see her. After an hour discussion he came away with a good grasp of the system, as it applies to us. He also told her under no circumstances was she, or anyone else to contact me but to go through him at work – step two wouldn’t you say?

I am now armed with all the info I need, should I decide, to put mother into a care home. Also, mother can stay in the respite unit for a few months, give or take, should it be necessary. That is good. The unit is a lovely place – pressure off, step three!

While I am feeling on the up – Wondered if you could give me some info (google, whom to ask) on what kind of help I could expect if I decide to keep mother with us. I realise it would area specific etc., but thought there may be some general things.

Once again, my deep felt thanks to you all. You have made me realise that I must stop being ‘the giver’ and be ‘the receiver’….. At least for awhile…..can’t go against your nature, can you, lol

Mary
Hi Mary, glad to see you are feeling better Image
Thank you Myrtle. That is kind of you.
Mary
Hi Mary

I've only just read this, firstly, you're not at fault in any way, you've done an amazing job, one that some people wouldn't be able to cope with at all; secondly, I think one of the social workers we dealt with must have moved to East Sussex Image, so you're not alone Image; thirdly, I'd agree with the recommendation that you find someone to act as an advocate for you, it's harder for SWs to act in this way with a witness and finally, I also agree that if you decide to have your mother back home you need to make sure that her return is conditional upon you having a care package in place that meets her needs and yours.

I'm so glad that you feel better today, sometimes our experiences of dealing with services can be very damaging, it's difficult but try to remember that they've failed you and you've failed no-one, don't let them get to you but it looks as though your husband is making sure that this particular person can't do any more damage, he sounds brilliant, can I borrow him Image ?

The Department of Health has publications relating to access to and charging for care, your local authority should have information on the services they provide and you might find the Care and Health Law site useful. The DoH home page is at:

http://www.chi.nhs.uk/eng/inspections.shtml#themes

Care and Health Law is at]http://www.careandhealthlaw.com/Public/ ... ntentID=16[/url]

In my experience knowing what is or should be available doesn't mean that you will necessarily get what you need but it does mean that it's harder to fob you off.

Take care, Mary, and good luck

Annie