Thanks Tina,
Dad spoke to social worker at tea-time. The Panel were basing their decision on how my mum was 2 weeks ago! She was really difficult to manage then, over the last week she has been a little bit calmer, not as "vocal" and will sit in the chair for prolonged periods, instead of wanting to be up and off continuosly. She's still angry, rambling, but having quiet periods in between, she actually sat with me on Mon and fell asleep for the first time in weeks.
She's had another fair day today and had a good tea the nurses say, although she still fights them a bit when they are attending to personal cares.
We have found a nice dementia unit, (I've had to do the "home run" twice, as they first assessed her for EMI Residential, then it changed to EMI nursing, then Continuing Care.) I felt very comfortable there, patients looked well looked after, all at differing stages of the disease, very local too. They actually assessed mum about 4wks ago, when she was at her worst, and they said they would save a bed, dependant on funding (mum was needing 1 to 1 nursing at that point, hence them applying for Continuing Care) They are known for taking difficult to manage patients, has a good reputation, and the nurse in charge gave me lots of advice when I thought mum was on too much medication.
The Social Worker and nurses on the ward think that, if our chosen home would take mum on a trial basis, like your "plan", keeping her bed available on the ward in case of, that would be a good plan. As she's not needing 1 to 1 care now, she might not need the continuing care funding anyway, so, hopefully, the home would have no reservations about taking my mum. They are going to put this to the consultant tomorrow.
All we want is mum to be settled and well, looked after, and be able to visit with children, everything is STILL up in the air.
WHY is it sooo hard?
Mum is 63, on a mental health ward waiting for funding to go through (for the 3rd time, but that's another story), for EMI continuing care plus a top up, lost track of all the Jargon now, have had enough.Found her a place at a nice home, keeping bed for her depending of funding confirmation, which is one weight off the trauma. I havent seen her since weds, the amount of time i can spend with her is slowly decreasing as it is breaking my heart. She's in a constant state of personnel torment, angry, aggressive, words sometimes come out right, mostly wrong, swearing like a trooper, as if she's got a form of Turretts syndrome. Can't feed herself, needs 2 nurses to walk her to bathroom, doesn't know who I am anymore. She never stops shouting out, ALL DAY, the only positive thing she's doing is sleeping for moderate chunks throughout the night. She's been on lots of drugs, diazepam, lorazepam when required, aricept, risperidone, quitiepine, which they are slowly increasing, but nothing gives her any rest/peace. When i go to visit, she is now sat on her own in a lounge, food down the clothes and round the mouth, losing weight, and some days looks so dehydrated. The consultant mentioned the addition of Rivastigmine? Helps with agitation, although not licensed for use in moderate to severe stages. Just 4 weeks ago I was managing to get her in the bath by myself, I haven't seen her actually walking for over a week. I feel sooo helpless and frustrated. They all keep telling me she's so complex, a Square Peg. They have tried other things, like the snoozelen room etc, but nothing helps her. I feel like they are slowly letting her die, with so much suffering, can't bear it. What can I do? Had numerous meetings with the consultant, he says there are other option such as anti-epilepsy medications, has anyone heard of that? I'm a general nurse, but this is way beyond my comprehension....
