Hi all,I stumbled across TP when looking for some advice from Alzheimer's UK and where better to get the advice I need than here. Apologies for the length this may be but I need to start at the beginning......
I live in Australia and have done so for 6 years. My dad passed away in 2001 and mum has been on her own in UK since then. The first couple of years after me emigrating mum visited a few times. Even on her first visit back in March 2011 I noticed things weren't quite "right". My brother who lives about 50 miles from mum in UK kept a close eye on her but by April 2013 at her final visit to Australia, I knew it was dementia. She had all the classic signs and symptoms and I was so worried about her flying home alone half way round the world. Anyway, she got home and managed to spend another year living alone before we had to move her into an apartment with a warden in April 2014.
The move from the family home seemed to speed up her symptoms. She lasted 6 months in the apartment before she had to go into a residential home in November 2014. Again, this triggered more severe symptoms and she had to be sectioned by the mental health team for aggressiveness and moved into a care home specialising in Dementia in November 2015. She has been there since.
To cut a long story short, she is 74 years old, fully incontinent, she forgets to eat and when she does eat has to be prompted to chew, she hallucinates, she takes things from other rooms, she wanders and will not sit still at all, she doesn't know any of her friends or family and she has aged incredibly.
I have just returned from a visit to UK and am so shocked and saddened how frail and old she looks. Two days after me leaving the UK, I received a phone call telling me she has had a mini stroke and is now being assessed by the stroke team.
This leads to my question:
My brother and I feel like we are constantly fighting the "system". When mum was assessed by mental health when she was sectioned, they told us she was unwell but not unwell enough (!) to receive any NHS funding. Her care home fees were worked out on this basis and we are paying quite a lot weekly for her care. Within 6 weeks of her being in the care home, the Manager called to say he thought mum needed specialist one on one care which would increase her weekly fees to over 2000 pounds! Of course, we challenged this. We asked for another assessment by mental health and that was over 6 months ago. We have heard nothing - is it me or I am justified in not trusting these people?
Do I continue to fight this manager. At the end of the day, my brother and I want the best for mum and as long as she is safe and looked after, that's all we want. He has backtracked since I questioned getting another assessment and has not mentioned it again. I am now concerned that since she has had this stroke, he is going to try it on again. I don't understand how someone can be so poorly and yet not poorly enough to have some help with funding. Why do we need to fight the system all the time? Mum has a little from her apartment sale but this will only last a few months if we have to pay 2000 pounds a week. It makes me so disappointed that despite paying into the system all her life (and my dad did too) there is no assistance with care.
The final icing on the cake was a voicemail that my sister-in-law received from the care home manager. Mum was taken to hospital by ambulance around 8pm when she had her stroke and the manager said he would be invoicing us for his staffs wages as there was a member of staff that went with her. We signed a contract with the care home for 24 hour care and surely they have a duty of care to be with her. What would happen if my sister-in-law or brother weren't about? Would they have put her in an ambulance and sent her on her way alone? It was only a member of the Emergency staff who alerted us to this!
Has anyone else been in this situation? I really don't know who to speak to regarding this.
Sorry for the war and peace guys!
