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Carers UK Forum • Remember I said I'd need you again - Page 2
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Re: Remember I said I'd need you again

Posted: Wed Apr 04, 2012 12:36 am
by malc
you said in your post"your don't want to seem needy",that's the thing with dementia you are experiencing things that are out of your control,what hit me was the fact i can't fix this and it scared the hell out of me,i've been desperate,suicidal and totally overwhelmed by it all,if you've found somebody to help you through it,embrace the help on offer,write everything you do down and write down every example of abnormal behaviour and memory loss you can think of ready for when you see the carer person and consultants etc,i did.we got a diagnosis and a year later it is becoming a bit easier to live with,a bit like a person who has died and the grieving fading,some people will understand,some won't,you will find out who your real friends are,re your husband telling your daughters he's not eaten,look at it like he's a child saying it and then it's easier to understand,i remember leaving the wife at the friut and veg in lidl,i wandered off to get something i'd forgot,came back and the look on her face was the same as leaving a 2 year old on it's own in the middle of town,heartbreaking,2 hours in town now is enough for her after coaxing to go in the first place,the look of fear and dread,we can't go on holiday because she wouldn't hack it,can't change the car because it's an extension of home,don't go to the alzheimers group anymore,learn the rules that dementia plays by and it's easier to live with,good luck and take every bit of help you can get,you'll need it.

Re: Remember I said I'd need you again

Posted: Wed Apr 04, 2012 10:23 am
by malc
audrey i'm glad i could help,your right music will stimulate memories,we spent an hour sunday night on you tube watching believe or not,pipkins,count duckula,ivor the engine,moomins,the herb garden etc etc,you could write an essay on why it helped but you just have to accept it does but it's like i said once you know the rules you can play the game,ask questions the sufferer knows the answer to,learn when to prompt so they think they've got it right,confidence boosting helps no end,not treat them as a child more protect them like a child

Re: Remember I said I'd need you again

Posted: Wed Apr 04, 2012 11:10 am
by Anne001
Hi Joanna, I am a bit late but I just wanted to welcome you to the Forum. The good news is that whatever happens you are amongst friends here Image . Others can give you far more advice than me. Dementia is a terrifying illness and particularly tough on the carer. I think I may be at the start of that journey with my mum and yes, I find it really scary. Wise words from Michael, Audrey, Malc but no easy answers. We are with you now though and whenever you need to vent, you will find a listening ear here. Take care, Anne

Re: Remember I said I'd need you again

Posted: Wed Apr 04, 2012 10:16 pm
by Melly1
Just wanted to say hi, we are here for you, take each day at time and lots of folk on here have direct experience of what you are going through and will support you all the way.

melly1

Re: Remember I said I'd need you again

Posted: Thu Apr 05, 2012 8:05 am
by bowlingbun
Dear Joanna,
Just keep reminding yourself that you are not Superwoman. Your husband has a medical problem and you need to learn how to cope with it, and you need support to manage both him and your life. Carers come from all sorts of backgrounds, one of my son's friends has a barrister for a dad and a dentist for a mum, but their son needs and receives help. Needing help isn't in any way an indication that you have failed in any way, shape, or form. Forums, carers groups, helplines and benefits may never have been part of your life before, but there is lots of support to be gained for you from them. Our local carers group runs trips out in the summer for carers and their carees. Emotionally this is going to be a tough year as you adjust to your new situation. From what you have described, your husband has significant care needs already. If you haven't done so, get in touch with a benefits helpline - if the Carers UK number is busy, they also run and email service, full details on the website. Some disability related benefits are paid regardless of income, others are means tested. There is no need to delay any claim until you have a "formal" diagnosis. If the hospital hasn't put you in touch with Social Services (Adult Services) already, give them a ring and ask for someone to come and see you, to explain what support is available locally. Writing a diary is a really good idea. Writing a list of the things you struggle with most is also a good idea, and streamlining your life as much as possible. I was caring and disabled for a while. I've become a great fan of washer dryers and dishwashers, polo shirts instead of shirts that need ironing etc. Just remember that it's fine to accept help, you are not Superwoman, you need a break now and then to look after yourself too.

Re: Remember I said I'd need you again

Posted: Thu Apr 05, 2012 1:00 pm
by Myrtle
Good luck with your meeting tomorrow with the lady from the helpline.

Re: Remember I said I'd need you again

Posted: Thu Apr 05, 2012 8:52 pm
by Scarywomen 'not'
Thank you all. You are wonderful people Image I will let you know how it goes. On the suggestion of my husbands nurse I've made an appointment with my hubby's doctor. I need some clarity as to what their thinking as I'm finding it hard to get info as the doctors on the ward are always rushing around and you can never get them to stop and answer your questions. My hubby gets distressed if he sees me talking to a nurse or doctor. I have to sneek around when he goes to the loo or for his lunch. It's getting like a James bond movie Hubby's nurse says his confusion has gotten worse since he was admitted and said there are other things going on with him as well but when I pressed him all he would says was you need to see his doctor. That as you can probably guess has me a little worried.
I'm determined to get this whole mess sorted I'm not prepared to carry this whole burden on my own anymore. I'm saving the government a fortune in care bills. I think the authorities need to shoulder their share. I only get £55 a week in carers allowance I was in management before hubby took I'll and had to stop working and I had to stop working to care for him. I took a big pay cut OK! RANT OVER! You can come out now scary women has calmed down.

Re: Remember I said I'd need you again

Posted: Thu Apr 05, 2012 9:22 pm
by bowlingbun
Dear Joanna,
I know just how you feel, not a scary woman at all, just an intelligent woman who is really concerned about the man she loves and the nightmare she finds herself in. Caring is no substitute for the job you once enjoyed, and when you become a carer you are supposed to be treated as an equal, but some are a lot more equal than others! The hospital should be able to arrange for you to have a meeting in a private room with the doctor in confidence, you shouldn't have to be sneaking around. I think that most hospitals have a PALS service (I think it stands for Patient Liason Service). Have a look on the hospital website for more information. In my County the Princess Royal Trust for Carers are very active, but it's a patchy service, not nationwide. They gave me a lot of support and counselling when I was struggling. Alternatively, your local authority might have a Carers Centre. Feel free to get things off your chest here. Hope that helps. Take care.

Re: Remember I said I'd need you again

Posted: Thu Apr 05, 2012 9:32 pm
by malc
reading between the lines he seems worse than i'd expect a person to be at diagnosis stage,you need to have a firm conversation with a doctor and find out what the hells happening and if you get no joy march straight in to the pals office and tell them the situation,it normally does the trick,don't be fobbed off they're only doctors not god,i will be intrigued what they say when you find out some answers.if he is further along in the disease why did it take so long to get to diagnosis ,was it the gps fault as usual

Re: Remember I said I'd need you again

Posted: Thu Apr 05, 2012 11:08 pm
by Scarywomen 'not'
Malc I was reading online that the early stages of dementia can present as depression or other mental illness. I starting that the doctors were content to call it depression give him some pill and se him every six months and as usual leave the rest to me. They started him on seroquel. I think that's for his agitation. I think I'll have to let scary rant women out in this hospital. I contacted the Alzheimer's society someone is coming to the house to see me next week. If he's is further down the road than I think and if someone is at fault I'm going to find out who the buck stops with. I think I have a duty to do something to try and stop this happening to someone else. Pity the government doesn't listen to us the time and money it would save. See there I go ranting again. I'm buying a soap box tomorrow. Question Time here I come. Move over David Dimbleby. I'd give those politicians a roasting they'd never forget.