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Vascular dementia and Alzheimer's

Sorry to write this, as it really is me as a carer (unpaid) to my husband with vascular dementia venting my anger at the government. I couldn't believe that they are proposing to take our homes from us, should we need extra care in the future. It is very stressful to look after a relative who is ill without being told that you could loose more or less everything you have worked for. The only support I have received is list of phone numbers in case of a crisis. My life is a constant crisis!! So I have a good cry and pick myself up and carry on. If the moderators fill fit to delete my moan, please do so

Rienij

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Flopaterson hi thank you for saying how it is I am also a carre for my husband with alzheimers it is a constant crisis every day he also has physcosis with his alzheimers which is really bad all I got given crisis numbers which are a load of rubbish no help at all at moment they have sectioned him for twenty eight days after a bad episode of physcosis which is really upsetting seeing him in there he doesn't know why he is there it's a horrible place I don't like going why put somebody in a place like that he's got an illness dementia a place like that has just made him even more ill not happy at all

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Hi Flopaterson, sorry to hear about your husband, I know exactly how you feel. The government obviously doesn't realise that the great army of unpaid carers are older themselves with their own health issues. And instead of a nice thank you planning to take your assets, leaving enough for both funerals cost. I do hope that your husband will be able to come home soon, although you are not happy with the place he is in, the NHS staff are very good in dealing with a crisis situation like yours. Big hugs and all the best to you, please take this opportunity to recharge your own battery. Kind regards Rienij

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Hi yes you are right he is a place of safety and was getting a bit hard for me hope they sort his meds out and can be a lot better am trying to relax now but it's hard kind regards and hope all ok for you flopaterson

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Hi yes I am ok thank you. Just keep fighting against all odds. You take care, good weather is on the way, make the most of it. Good luck 😉

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HiHi I have Vascular Dementia, I think the evil is coming from what the Tory party are trying to implement so that even more people suffer as that's all that happens with them.

I don't know about where you live but I'm in the seaside town of Southport uk and for me I do gets lots of support, I am early on set sufferer so if that has anything to do with it, one group that was held at our local Southport Football FC BUT the local NHS merseycare pulled the plug out of the bath.

We then decided we can still meet up as a group to help ourselves and to keep in contact, this group is one of all ages and different Dementia types

Like you say there doesn't seem to be any support for the older sufferers. If it's any benefit you, you can get a council tax cut of 25%,.

Philip.

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Hi Philip there is no group that I am aware of here in Banbury. We have a Neuro nurse that comes to see us every 6 month, and a doctor in the memory clinic every 6/8 month. Hence the leaflets and phone numbers. They implied we could ask for attendance allowance, but I don't know wether we are entitled or not. Don't know about rates reduction. But to me as a carer you start to feel very isolated, especially as you tend to worry about inviting people to the home, in case he is having one of his mood swings. It is even difficult with family sometimes. You seem to be very lucky to have such a group getting together. Thank you very much for your reply.

rienij

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Hi, I get all my benefits but when things changed health wise, I lost almost everything because I couldn't remember what was wrong with me lol and suffered a lot without money, after I was diagnosed with Dementia and I was called in to the job centre to look for work lol, I gave him a letter with my diagnosis, the mans face dropped and said " I can't find you a job then", he looked hurt lol, next they sent someone to my house for the new PIP, I won my case then started to pay me the enhanced for both care and mobility.

My wife gets carers allowance, so that was that, I had to move from my marital home and live in a one bed flat alone, my wife is still around to care for, Thank God. If you are out the later years of life I can't see why you should not get the allowance, your entitled to it as far as I know, so don't take this as gospel, also council tax and it is now classed as a terminal illness you might want to contact your insurance broker and you could be in a for a bonus of some sort.

I hope it all goes well for you.

Philip.

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There are a lot of groups online, if that would help as you can have a rant, also there are Admiral nurses , Specialist Dementia nurses who could give you some sort of advice, I believe they are Dementia Angels, same you and my ex wife for being there to care for and support, thank you.

Philip.

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Hi Philip I have just been looking at some of the benefits. My it is a minefield. Where on earth do you start? 😒

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C.A.B. is the best place to start because they know everything about everything, a brilliant charity.

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Hi Philip thank you for all the useful info. I actually had a result yesterday afternoon. Had a phone call from dementia advisers care , I think that is what the lady said. A follow up from the memory clinic. They are going to help me to access all the benefits we are entitled to. It sounds weird, but the call perked me up. Just the feeling someone is looking out for us.☺️

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Good to know you perked up lol.

I can understand that you perked up because you now know the reason/s for your memory loss and such, now you know what it is, you need to keep your brain active, if you want to chat you pm me.

Having dementia doesn't mean your dead or dying, it can takes and sometimes more lol, you'll have your ups and downs.

If you get to the stage that you feel you've had enough, give Samaritans a call freephone 116123, they don't trace calls so if you think they will call the authorities don't worry because it's in the strictest confidentiality, they are brilliant people to talk to.

Philip

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Age UK also very good.

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Hi rienij

so know what you mean, and then see all over tv that we are paying into a system that then throws the money into charities that have been getting funds for overseas projects for at least 70 years. So, when are they going to look into our social services and tell us that we can get help??? Dementia is on the increase they tell us. So wouldn't that also tell them that the number of carer's , who at this time are isolated, is also on the increase??

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Hi Lell1 to be frank I don't think the government give us carers a second thought. It is an easy way to solve a growing problem. First they close all the mental health hospitals to be replaced with care in the community. Then they charge for carehomes and the care in the community. Win win situation! Still we must carry on. We can't let our family down. I just feel so angry at the latest news about social care. They don't know the meaning of the word. Best wishes to you Rienij

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Carers? What are they? It is getting so bad that we also have to choose between 5* and 1* care homes should we need them. After working for 60 years to try and provide for our families and our futures only to find that we are taxed on evrything we spend, everything we don't spend, and then expected to pay for any care we may need. Oops! Silly me, it's that little gap in the evergrowing mesh...we look after our own at the bargain price of isolation! My father has worked all his adult life, but has no home of his own, just a few savings, and they won't even help with the cost of a stairlift! He has to pay for his own carer that he has chosen to have as a matter of dignity. He has paid for his own scooter and rise/recline chair. And social care? A basic commode!!

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I too feel very angry about the new system being mooted especially when it seems more important to look after people overseas. Who is more important, the people,who pay taxes or people who are just waiting for our money to waste.

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Hi thank you for your comment, you are 100% right. My husband spend 22 years in the Airforce, after that worked for 25 years without any time of for sickness, paid his taxes as I did. And where did it get us.? I have looked after my husband since he became ill, any help we needed we paid for ourselves. But the latest idea beats it all. 😡

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I'll be voting labour because they seem to care about us, Tories I think just want us either in the gutter or dead, labour say they will help the poor and sick and disabled plus a good few other, NHS.

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Personally I will vote Labour, my reasons are worries about the NHS being closed down and reopened by some wealthy business men/women. And that would see me fade away because I'm so broke that I would end up dead in a gutter, don't know where the gutters will be lol.

Live and love as long as you are able.

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I think all carers are all Angels, thank you.

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Hi Philip How are you these days? Hope you are well. Thank you for saying all carers are angels. Don't feel like an angel. Just tired all the time. Xx

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HiHi good to hear from you, I'm struggling at the moment and living alone doesn't really help lol, although I do enjoy it lol day by day, the local NHS have removed most of thier support as in we had 3 support groups now down to 1 at a new local drop in, it still helps.

At the end of the day we still need to carry on and my little girl Eris is what keeps me going.

Apart from that lol I'm great hehe.

Angels are angels on earth and in heaven.

How are things your end? Well I hope.

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Hi Philip things are relatively quiet at the moment. Sorry to hear that you are struggling at the moment. I am not surprised about the cut backs. The same everywhere. A lady from the Oxfordshire dementia support made an appointment to come and see us. Twenty minutes before she was due we had an email cancelling it. And would be in touch soon. Well that was the beginning of May. The only support we get is a Neuro nurse every 6 month. I know how you feel. You must feel very isolated. Still at least we are here constant and try to give some support to one another. So hopefully you be able to cause a bit of mischief soon again. Take care Hugs and best wishes Rienij 😊

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