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lewy body disease - Page 3 - Carers UK Forum

lewy body disease

For issues specific to caring for someone with dementia.
Finally received a copy of the needs led assessment of dad and mum which i asked for on the 5th Sept. Social worker sent some of it cut and pasted but not the identified needs saying they are buried in the assessment! Now the decision has been made to place dad in care he has sent me the full document identifying needs for ........wait for it...... Image
Laundry service
Provision of meals
Two waking nights a week
Three days a week day care
8_ 12 weeks a year respite care by social services. Image He only told us about the day care .
This is so wrong. They discussed our case each week apparently at the hospital with the consultant. Mum should be invited to attend. Mum should have the copy of the assessment.
Dad should be able to have a hospital admission to sort out his drug problems. Consultant says nhs services have nothing to offer. Why i have looked after others in same situation with same probs in my post code area.Its a post code lottery for early alzheimer /dementia sufferers.
We have been bullied all the way.I asked for details to contest the decisons none came .
To top it all he has written stuff to make it look like we asked too late, dates changed etc
Only mention of direct payments is to say that he never applied because he was waiting to hear fom me about respite care... its rubbish ...i gave him full details of home and he said he couldnt get through.
Rage rage rage settle down now girl your dads gonna be ok. Trouble is i wanna be there to make sure he is ok.
Sorry I am using this as my diary blog is that aginst the rules. Must check. Bye for now all you lovely people. Stroppy Eva.
Eva, don't worry. We understand you need to have a rant.

The difficulty will be proving what you've said if you complain. Do you have anything in writing to back up your side of events?
I always keep records Charles. Dont have the energy at present to complain.
Thanks though.Eva.
HELLO EVA WE HAVE JUST HAD A REVIEW OF MUMS CARE AND MY SISTER IS REFUSING TO DO THE TWO NIGHTS, THE SOCIALWORKER HAS BEEN GREAT AND HAVE RECEIVED EXTRA 15 HOURS AND 4 WEEKS A YEAR RESPITE. iT DOES HELP BUT i AM STARTING TO THINK MUM WOULD BE BETTER IN A HOME NEAR ME AS i LIVE 45 MILES AWAY AND AM CONSTANTLY WORRYING ABOUT HER, HOWEVER I FEEL GUILTY ABOUT THINKING IT BUT CANT SEE ME CONTINUING FOREVER AT THE PACE i AM GOING. aNY THOUGHTS ON THE SUBJECT
Catwhit,

Would it be possible for your mum to try respite in a home near you? You may be surprised and she will like it and if it makes it easier for you to visit and not be under constant pressure all the time it would be worth it.

Hubby and I spent seven years travelling to care for my parents, a six hour drive each way and latterly we were no sooner home than on the road again........I sometimes have to stop myself buying two sets of underwear or shirts as I was so used to buying double so we had one wardrobe at home and one with my folks. I can so sympathise with you. I am told I was lucky being an only child as the care all fell to me and there was no siblings to squabble with about who was doing what!

Take care and chin up
Meg
thanks meg. I am so pleased someone knows how I feel. I have been very weepy this week and wondering what to do. I have got mum in for weeks respite in a home near me in october, heres hoping she will like it. Again many thanks for your reply
Hi Meg and Catwhit ,
You made me smile I have seven brothers and sisters so you can guess what its like. On the whole we have pulled together. Dad is in respite near mum and is doing well on the new medications. Such a relief. I have cried buckets so with seven of us I guess we,ve cried a river like it says in the song. It does help having all of them to share with but the fight with the social worker and persuading the consultant to try the medications has been the biggest nightmare but we got there in the end. I do think though that Alzheimers input/care in dads area is poor and I want to join up to some society/charity to help fight for better help at home and for more help and advice from the health service. They are brushing them under the carpet. Just cos there no cure yet dont mean we shove them off the list for help with medications and advice.
Chat again soon and pleas keep in touch with what happening with your loved ones too. Image
Eva
Hi Catwhit,Have just been to see my dad . Despite all my misgivings he is very serene and appears happy. I cant believe it! I really cant. Honestly I,m not in denial trying to make me feel better.
Perhaps he was worried about us caring for him and felt it was too much for us. Perhaps all the strange behaviour was him trying to help out we will never know this side of heaven I guess. All i can say is look at some places, try it out, til you look it wont be real and you wont be able to think through realistically what mum needs. You will know the right place for mum. Sws will have a list of approved places and the CSCI have inspection reports on all the homes in the country. They are available on line. They should have scores of three to four in all areas specially health and social care if they are worth looking at.
I felt so guilty about dad and the greif over the change in his circumstances was huge but what can i say ..... he,s ok ....i cant believe it!
Dads not near me but as he is settled it isnt so bad. Let me know what happens .
Eva
hello eva and charles
thankyou for your advice I have been to see a home near me and mum is going in for two weeks to see how she likes it plus the carer and brother are away for two weeks. I have not slept well until I read your two last answers. I thought I could look after mum at home until she died and you do feel guilty and as if i have failed dad and mum. I feel if my sister had carried on those two nights we could have managed or am I just using her as an escape goat. Any way Mum goes on the 22nd october and will let you know if she is okay and I am.
Take care of yourself catwhit
Bravo Catwhit! There are some lovely places with some very caring lovely people who work alongside them . SORRY if my posts have been discouraging.My dad has severe behaviours which have only developed over the past 6 months so any placement for him will be difficult for staff to manage. His home is lovely the staff superb and they are bending over backwards to look after him but i am not sure they,ll be able to keep him. I wouldnt mind living where he is. I know all the staff and went to school with some of them and worked with others in the past. He has oodles of visitors.
Hope your mum gets on really well and that you will be able to rest easy when she is in.
Dont worry about my posts my dads situation is unusual to say the least as i am beginning to find out. Things will get better for us and i hope it will for you too.
Eva