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lewy body disease - Page 2 - Carers UK Forum

lewy body disease

For issues specific to caring for someone with dementia.
Thankyou all so much . I am mailing your replys to my sister who is doing a lot of the liason as she lives in the area. What would we do without you all. Sincere thanks
Eva x
Hello all .
I rang the direct payments unit and they say that all funding has to go through a panel for approval even direct payments. So is our social worker saying that he thinks the panel will not approve rather than the direct payments unit . Mum tired out not giving me all the gen. If so then there assessment is wrong!!
So perhaps they are saying he,s not bad enough yet or they think he needs nursing care. Patience is a virtue. Have almost persuaded mum to take a break away this morning and let me look after him for a week... I think shes gonna go for it. Im so Image
Eva
Apparently SW has not applied for direct payments for night care so I have asked him too today on the phone.He has been asked already. It was their panel that would not approve two nights of waking care for dad. Apparently they would be more supportive if mum had accepted respite care.....hows that?What difference would that make and is there a catch if she does.
What about dads rights to stay at home with good care coming in by his family. The best people to help are his family if they are well and not tired out. The care system is forcing mum into care break down and dad into seperation anxiety/bereavement if he has to go into care because of their decisions. How do we appeal....it would break my heart to take him into care, I cannot do this ................ very Image
Eva
Hi Eva,
My mum has lewy bodies dementia. Her lorezpam was increased to 1mg. and she has been okay on this dose. she takes it around about 6 p.m. We receive directpayments for mum for 11 and half hours each week. we identified a need for night care however we got it for afternoon care, how you spend the money on care we can please ourselves. It worked out we could afford 1 nights care and one afternoon care with the hours allocated to us. Mum pays 52 pound towards care and the social services pay the rest. There is alot of paper work involved initially but they have support workers who are there to help. My mum also pays 52 for private care because they could only allocate us a set amount of hours, I quite agree if mum goes into a home it would cost the ss alot more.
Hi Catwhit,
Dad has periods of agitation due to his young age physical fitness and dementia. All combined to make him so frustrated because he wants to be useful and active like he was just a short time ago. He is going down so quickly with additional behavioural issues I cant discuss here. I have been to look at care homes for respite for my mum and us who are exhausted from the night time care.Some of the dedicated units we have visited smell very bad and i refuse to put dad anywhere like this.The social worker said ..and i quote"thats care homes for you".I ran a care home and if you have a good cleaning policy staff handy with a carpet cleaner and a willingness on the part of the management to replace carpets when all else fails there should be no problem. IF A PLACE SMELLS THEN SOMEONE 9 TIMES OUT OF TEN HAS AN INFECTION WHICH NEEDS TO BE TREATED.ITS NOT ROCKET SCIENCE but it carries on and on.eVERY PERSON WHO HAS SMELLY WEE NEEDS A WEE TEST bet ya they need antibiotics! Have been to estate agents looking for houses with granny annexe perhaps we can help out more.
Why do people think its ok for dementia units to smell. You wouldnt pay for a hotel that smelt!
This afternoon we visited quite a nice place but i asked about the care at night. They asked if dad could pull call bell. I said no we have a pressure mat that rings quietly when he gets out of bed, so in effect he is calling for help as he is getting out of bed and may need supervision to keep safe AND HELP TO PEE IN THE RIGHT PLACE...."ahh I dont know about that, they usually (the staff)stay in a room upstairs and go into the residents in the morning. Bill has lino as he pees on the floor and his room is awash when we go in at eight!"...do they expect me to allow my daD to do the same . No A THOUSAND TIMES NO not if it kills me.... A SAD DAY but i am not giving up .Something will turn out well and there is good care out there. SW rang is going to ask his panal again for night care not direct payments.....did i make him change his mind...... oh well had a nice day took mum to luch as dad has some day care which he seems to like and staff are old friends and they are lovely.Hope things continue to go well with mum Catwhit and thanks for your reply. Lorazepam helps dad a bit but its not quite sorting him out.
Talk again soon and thanks to all
Eva
welcome to the site,,

and its any place that may house some one dissabled that smells,, maybe they dont have the budget for a bottle of freebreeze
Hi Pixienubbins
Not sure but i think i have offended you....sorry. However I am talking about care staff who think it is acceptable not to do their job properly and managerial staff who think it is ok to leave people in an unhygienic state or place which they would not be in if they had a choice or ability to remove themselves from the situation forced on them by disability or illness. I am not talking about anything else just in case you were wondering.
Regards
Eva
Hi All,
Sad news im afraid , dad is finally going into a care home as we were not able to have any night care.We are all exhausted . He has just started new medication which we got after his delayed hospital appt, he had six hours solid sleep last night (and he is not reacting to the medication.) the first in six months.WHY WOULDNT THEY HELP US before... didnt they believe us. People keep saying how lovely he is and how easy he is going to be to look after. Yes he is lovely and he will be easy a lot of the time with medications and carers who are allowed to go home to sleep at night and hand over to someone else. Without medication it is not easy specially for him as he suffers so much and we are so sad for him.
No one listens they just keep talking at us and we think that they think we are stupid!
Home seems nice though and staff easy going and sympathetic.
Ours hearts are breaking letting him go and mum keeps thinking she,ll carry on but cant, she will be ill too. The home is five minutes away so we have alot to be thankful for and it has a good reputation. Busying myself labelling clothes but feel i am letting him down and that i am betraying him. Its team work now as its 24 hrs and you cant do that on your own. My mum is really something else and the more i see of her the more i think she is incredible.Thanks all if you are reading me for your kind posts and help. Chat soon Eva Rebecca.
Eva Rebecca, don't for one minute feel guilty. Easy for me to say, I know.

But you have done all you could. If the authorities had given him the drugs he needed when with you, you might have been able to manage a little longer.

Be proud that you have given him all the care attention you could, and as the home is not far away I have no doubt at all that you'll be seeing him regularly, and helping out a little...
Bless you Charles 47.
Eva Image