Meeting at last

[busylizzy2]

Really pleased and nervous to hear we now have a best interest meeting arranged for Monday Aug 10th for my Mum in nursing home. I am hoping to bring both Mum and stepfather to live with me. Mum has now lost her NHS funding and is living in an EMI unit in nursing home which is not suitable because of noise from other residents. My stepfather 84 yrs has now got heart problem and asbestosis and they live 130 miles away. Will be loads better for me to look after them here. Only problem I am up against is the ever so not helpful social services. I know they will not want Mum to move and the home do not want her to move. They will be arguing that I am inexperienced even though I have been a carer for 30 years and they will say she needs 2 carers all day long and what if she chokes and what if she falls ect. Need to get my plan ready. Does anybody know if they can stop me moving my Mum to be with me? Mum does not have capacity for complex issues but has capacity for daily stuff and she has never stopped saying she does not want to live there and Mum always says she wants to live down here.

[Yvonneandgeorge]

Hi busylizzy don't really know about the powers that social services has, but when you mum and stepdad move in with you surely they can be reassessed for the NHS funding, you can apply for it as many time as you want, I am sure that is the case.

Good luck on the 10th August, could you see if maybe someone could go with you, what about age concern? Our a Solicitor?

Hope you sort it out, it was such a sad story, can't believe things like this happen.

Yvonne xxxxxx

[abirke]

Do you have power of attorney...I think its' called that when you can make decisions on your moms behalf....If you don't than maybe you ought to get an attorney.

Thats all I have , Goodluck,

AVB

[NannaB]

I think you are amazing to be fighting to have your mum and stepdad living with you. I am finding it very difficult with just one person to look after and that's with full funding and a lot of help. I think you probably will need to have someone to help you full time, is that possible? If it is that will be brilliant, if it's not what happens if they both need your attention at the same time? Do you have friends and family nearby if you need to take one of them to hospital appointments etc?

If SS were to approve the move, they can't just let her go. They would have to contact SS in your area and things would have to be put in place in your home to make sure it is safe. I was a carer in a nursing home for 7 years but 24 hour care is vastly different. I know all the right things to do and that helps but emotions and tiredness can break you when caring for loved ones and you can't get away after your shift. Your shift never ends. If SS know you live 130 miles away and you tell them it would be better for you to look after them there, they may think you want them nearer to you for your sake, not theirs so be careful how you phrase things on 10th. If neither SS nor the home think it's a good idea for your mum to move, they will not make it easy for you so make sure you have thought of all possible reasons it wouldn't be and have the solution to all problems ready. If they both moved in with you and it didn't work out, what then? Could you get them into residential care together. Would they be able to cope with another move? It is a very big decision to make and I admire you greatly for considering it.

I'll be thinking of you on 10th and hope whatever the decision is, it is the best one for your mum.

X

[Joeglad]

If she needs 2 carers and if she is in danger of falling and choking then she should have CHC!! Do fight that decision!

It's good there is a meeting but sometimes it is a box ticking exercise. Make sure your views are known.

Again though I urge you to consider how difficult the caring for a PSP sufferer can be. If you had CHC you would at least be having some help if you manage to get your mum out of that Home.

[Katiebow]

What a dilemma, I am not at the 24/7 care stage yet but this post has given me an insight onto how difficult it is to do what you feel is best. Good luck with your meeting and hope that whatever the decision it is right for all of you. Xx

[Amilazy]

Hi busylizzie2 I do not think Social Services can stop your parents moving. You could check with your local CAB. Agree with NanaB about not making it sound as though it is for your sake emphasise it is your parents wishes. The CAB could also help you claim Carers allowance and ensure your parents have both got Attendance Allowance when they move to you. Also when you have your parents with you you should again ask for a CHC reassessment from your local GP/District nurse as PSP is a long term terminal condition. Good luck on 10th. Tim

[formercarer]

I don't understand why she should have lost NHS funding, but I am certain that your mum will be happier with you, and that you are doing the right thing. Caring for my mum was the hardest and most rewarding thing I have ever done. You need help though. Ensure that social services gives her a care package. You can expect at least 1 and a half hours help each day so that you can get out to shop, you can also expect them to take her to a day centre at least one day per week. A local hospice may also offer regular support. Plug into the help available, you will need it, but you can cope. Well done for stepping up. She needs you x

[busylizzy2]

Thankyou for great advice, I will write your tips down on my list. Funding has been taken away because Mum no longer has the challenging behaviour she displayed when she got sectioned. However, it has yet to go to the panel on Aug 12th, so I will make my statement and try to keep her funding. I can always make an application again anyway. The illness I think we are still getting to grips with, the symptoms and the impact on our lives we are trying to deal with, but it is the stress of dealing with the people in charge, the social services ect that making our lives miserable. It feels like one fight after another. So glad I won the fight so Mum could see the neurologist in Cambridge and get her diagnosis of psp or else she would still be labelled with dementia with Lewy Bodies and she would not be getting the correct help. Feeling very optimistic and hopeful that we can get Mum away from there. x