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New to this... - Carers UK Forum

New to this...

Tell us a bit about yourself here.
...I have only just plucked up the courage to do this...I thought I was a strong person, but obviously I am not. My Mum died last June which left my disabled Dad (90) on his own, my brother lives in Cape Town. I brought Dad to live with my husband and myself here in Devon; I really thought that I could cope. I work part-time, but have had to reduce my hours further due to the changes in our lives. My husband is very caring, understanding and extremely patient. We have two daughters who have been very supportive, and three grandchildren. My problem is, I feel guilty when the family get together and kids being kids, make lots of noise and are just playing, I feel guilty when I go out - to work or just food shopping. I can't seem to be 'me' any more. I said a dreadful thing to my eldest daughter a few weeks back, I said that 'I wanted my life and home back'. My husband and I are in our 50's, and we were just starting to enjoy our life together and it has all gone haywire. I shouldn't even be thinking like this, am I really being selfish? I am getting very tearful (again), and sometimes I don't even want to be in the same room as my father. I hate it when the carers come in (double-ups three times a day three days a week and double-ups twice a day four days a week (when I am not working)). I know they are there first and foremost for my father, but I just feel there is no respect or thought for the rest of the family, after all, we live there too. The majority of carers are fantastic and we all get on, but it's just the odd few that get me 'wound up'. My father has had about 20+ different carers since he has been here, so the continuity isn't always there, it does seem to be settling now, but I feel a stranger in my own home. Is it me, or am I just being stupid. I really have had enough. I can't sleep, I can't concentrate. I just feel so down.
Hi Julie

and welcome to the forum - I moved in with my 87 year old Mum at the end of 2009 as she has Alzheimer's and restricted mobility and had got to the point where she was not safe to live on her own. I still have my own place but it's all shut up for the duration now and I'm fighting the urge to sell it and make the best of living here as currently I use it as my 'bolt hole' when I get some respite time from caring.

We don't have care assistants coming in, mostly it's just her and me 24/7 and your comment that you 'want your life and home back' really resonates with me as that is exactly how I feel. But I've learnt that I mustn't feel guilty about that - I have as much right as the next person to be selfish at times !

You can say what you like on here and no-one will judge you or find you wanting in any way - we've been there, done that and got the t-shirt to prove it !
Hi and a warm welcome from me.

Hi Julie
I care for my Mum too, she is 81 and in fairly good health. She has sold he bungalow which wasnt in a particularly good area and moved in with us while she has a granny annexe built in our garden - we have a couple of months to go before it starts.

We hadnt been really close at all - but when Dad died, what could I do? My stupid brother doesnt speak to any of us - that left me. I promised Dad that I would look after her.

We do the best we can, thats all we can offer.

Some days I go to bed having had a good day - sometimes not so good.

this forum is a God-send for me. I hope it will be for you too.


Edited to add:
By the way..............you are a strong person
thank you for all your words of encouragement and support. I realise that I am not the only one going through such stressful times. You are all amazing people to 'cope' with your worries and stresses and still offer 'a shoulder' to others. I am grateful to you all for your time and letting me know that I am not on my own. I will be a regular visitor now to the forum, and look forward to hearing from you all again. Again thank you, your words really did lift my spirits.
Hi Julie,

Roll call is a good place to get to know other members.

Hello to all, its been a long time since I was last here, Dad is still here, now 92, he was diagnosed with Parkinsons back in May last year. I am still struggling with it all, been on happy pills, but have since come off them as felt they were of no use to me. I've had emotional counselling, which helped, but I soon slipped back. Gave up work two years ago, big mistake, miss my work chums a lot, and the routine of going out....I'm sure you know what I mean. My husband was diagnosed with PD too back in 2010, and AF in April the following year, so he is having a tough time of it, and I feel that I should be devoting all my time to him, even though he is still working, and my Dad should be given a back seat for a change, so a little guilt is slipping in. I have had it up to my ears with care agencies, is anyone else having problems with them?? I have now been told that I am fussy as I have refused certain carers to come into my home. Surely, I have that right? I have to take my Dad's feelings into consideration, and if he doesn't want them, then surely......? Now a total of seven have been banned, two of them became far too familiar with my father to the extent they were causing trouble between my Dad and myself. I have now been asked if I will take these two carers back!!!! I can't begin to comprehend why they should ask this when they know why they were excluded in the first place, apart from they are short staffed, or they are trying to oust us out. I have made enquiries at other agencies and a few hopefuls have come back. Am I the only one that feels they are being walked over by these agencies?? Help xx Julie Wootton Image
Hi Julie,
I looked after my dad who had Alzheimer's, he died last October. We had care workers for the last 3 years of his life - and I was constantly in conflict with the care manager.Being 'walked over' rings a very loud bell for me ! I was told I was difficult too, though some care workers told me that in fact the clients who got what they wanted were the more aggressive and unpleasant ones because the manager didn't want to have to deal with them.
You are of course entitled to say if there are care workers you don't want in your home,
and anyone who makes you feel uncomfortable in your own home should be on that list !! When I look back I wish I'd employed care workers directly, because so much stress came from the care agency manager and not being able to have consistent care.
Would this be an option for you? It sounds daunting but there's an organisation which can do all the paperwork for you and you should get support from Social Services too.
Do you get Direct Payments ? I think you get more respect from care workers if you are employing them directly, and it would mean you could ensure consistency which would be so much better for your father.
It must have been very difficult for you to give up work. Do you get a break from looking after your father, are you able to keep up with friends etc. ? Have you had a recent carer's assessment from social services? Your situation has changed a lot since you started looking after your dad, with your husband's diagnoses. You need to look after yourself to be able to support them - and I know it's easy to say and very difficult to do but you may be entitled to more help than you realise.
Are you in touch with Parkinsons UK ? Their website is www.parkinsons.org.uk and there's a lot of info and support there.
Keep posting and let us know how you're getting on. best wishes, Lesley xx
Hello Lesley, thank you for your quick reply. Yes we do get direct payments. I did employ PA`s,one of whom worked with an agency and decided to go on his own with his fiancee. It started ok, but they became too familiar. On one occasion they asked if I would look after their three dogs while they went away for a weekend, that was the final straw. When the new rules came in for PA`s they decided to call it a day. We are now on our third agency. Don't misunderstand me, some of the carers are wonderful, and take a lot of flack from people, including their employers, but it seems that management just don't listen to their clients. It's bad enough having people letting themselves in your home two/three times a day, your privacy has gone, watching the clock all the time waiting for their next visit......but then that is nothing new to you either. People wonder why I get stressed, they can't understand why I am the way I am. Yes I've had an assessment but `my score didn't add up`, so that was a complete waste of time. My community care worker has gone Awol, so I have now got to go through the referral process yet again. This all came about when I asked for respite care for my dad the weekend my daughter gets married which is in May. So playing the waiting game again. The only break we have had was September 2011and that was a long weekend. It seems that no one wants to know once you are in the system. I feel the more I seem to complain or voice an opinion, the more I am branded fussy or whinger. If the agencies carried out what we wanted there would be no need for me to moan.
My husband is going down the route that if we don't discuss his illness, then it's not there which is of no use to me I would like to talk to him about it, how he feels, how I can help him, but he is in burying head in sand mode. He won't tell any of his family for fear of them feeling sorry for him which I totally understand, but I do feel the need to talk that's just how I am. I have the PD literature pack which has been very useful, and I will look into any extra help there may be. Thank you for your invaluable advice, and for taking the time to reply xxx
hi Julie,
oh dear - how familiar this sounds to me !! I found it so stressful coping with the carers and all the other agencies involved with my dad. His 'social care co-ordinator' was completely useless and I had to co-ordinate everything. As you said, it's hard enough feeling your life revolves around those care calls, without having extra stress because you can't get the standard of care you should have for your dad.
It must be difficult with your husband too, men do seem to prefer the ostrich approach to health, but it's frustrating for you.
I hope you get the respite sorted in time for the wedding. I only found out that respite was an option because the care workers asked me why I was the only one who never had respite care, they told me many people had 6 weeks per year. We live on the edge of the council boundary and there's such a difference between the different councils. I did 3 years of 24/7 care without any respite, and looking back I realise how much it would have helped me and enabled me to look after dad better if I'd have had the odd break. So, keep pushing them. It's such a tactic to imply that you're difficult or demanding, just a cop out for them. Dad's care co-ordinator kept telling me how expensive his care package was, which infuriated me considering how much he had to contribute - not to mention paying his taxes for 70 years ! Carers save the government millions, so why should we be made to feel we're being demanding?
We only got a good social worker when they (SS) decided to apply for continuing health funding so the NHS would pay instead of them. At that point they realised the care co-ordinator couldn't cope so they brought in an experienced social worker to do the application. She was great, and I realised the sort of support we should have had before, but as soon as the NHS took over funding social services washed their hands of us completely. Dad was having a course of physiotherapy to improve his mobility but that stopped and nothing was put in place for months, which meant that he ended up in bed permanently. I could write a book !
Sorry I've nothing encouraging to suggest, all you can do is to keep pushing them. Give yourself credit for what you are doing, everyone on this forum knows how hard it is and what it takes out of you. Post on here when you need to, it helps.
take care, Lesley xx