Radio 4 research
Hi, I,m new to this forum and new to the 'Alzheimers Carer' role but already I have had some traumatic experiences, especially with the Health 'system'.
My father was a professional footballer, he's always led an active life. Since he retired early to care for my Mum who has Diabetes complications, he has walked everyday, he loves being outdoors.
Mum started to notice unusual behaviour and tried very hard for two years to get the doctor to take notice. She researched the symptoms herself and eventually insisted on a Memory Assessment by the Elderly Mental Health Team. She got the diagnosis she was expecting and luckily he was prescribed the latest medication. (I know it depends on local authority funding- post code lottery).
Because of her ill health she found it difficult to cope with him and she felt afraid for herself because she had lost her Carer.
I helped them sell their Mobile Home and move into the local Housing Association Sheltered Housing where they had daily help, meals cooked and an 'emergency' chord. I thought that things would settle for a few years but within less than a year, bearing in mind the emotional strain and adjustments experienced in moving at their time of life (mid 70's), Mums physical & mental health deteriorated.
Unfortunately she doesn't understand Alzheimers and is very confrontational with him. This led to the Social Services seperating them for his safety, they put him into a Mental Hospital because there was nowhere else for him to live at short notice. It was a living Hell. The place was clean, staff were good, meals o.k but being locked up with 20 other patients who were completely 'gone' was frightening. Not only were they unpredictable and noisy but he saw what he could end up like which was terrifying!
He had to spend 6 weeks in there before I could get him out. The consultant advised that he go into a Residential Home because he was at risk from Mum and also he couldn't go out alone any more because he had lost his road sense and spacial awareness. There was so much 'red tape' to get past. Assessments, meetings, tests by different people, for 1 week the ward was closed due to infection - we couldn't visit, he couldn't come out, it was aweful and his Alzheimers got worse by the day. I was grieving that it had come to this. We knew he would end up in a home but I really hoped he wouldn't know anything about it by that time. He seemed too young, too spritely, too active.
Anyway, I followed the advice from the Authorities which was supposed to make the situation better for all of us, at the time we felt relief at getting some support and were hopeful that life would settle down.
Mum & I visited 3 Care Homes and chose the one that promoted Alzheimers stimulation and activities which would give him a better quality of life and take the pressure off of me, I take him out walking every afternoon because if I don't he becomes withdrawn and I feel so sad.
Within the first week we found out that the newly trained Manageress had quit. The old Manageress was 'acting' part time, morale was low, they are short staffed and underfunded ... the old old story of our Health Care system.
Consequently they haven't been caring for him even to the Minimum National Standard, which I am now putting more time & effort into investigating in order to meet with them and ask for an action plan. I have enroled the help of a privately paid Carer to help with them both because my health is suffering, but that has financial implications.
I have registered Power of Attorney to manage his finances and I'm in the process of applying for Social Services funding. We don't know, as yet, how much they will contribute but we are paying £100 per week of the £500 per week fee. They have said his Attendance Allowance has stopped which leaves Mum with just his pension to pay for it. So, on top of everything else we have money worries.
Mum has just come out of hospital with a suspected Heart Attack. She suffers with Angina due to her Diabetes. They are both being treated for Urinary Tract Infections which make them even more confused and unable to cope.
I could write a book, sorry!
My experience so far is that you have to fight to get help, they promise you the Moon but in reality it's not there. It feels like we are in the shadow of an Eclipse. Let's hope he's still with us, to enjoy the sunshine when we come out the other side.
