“Uncle Albert is 96 and has paranoid schizophrenia, epilepsy and advanced vascular dementia. He is incredibly independent and until recently, was living in his own home in Portsmouth.
Albert never married, but lived with his sister until she died four years ago. At that stage, we took responsibility for Albert, as no-one else in the family was able/willing to do so. It proved very difficult as Albert’s condition started to deteriorate.
About ten times during the four years, we arranged home care for Albert, which fell apart because he frequently wouldn’t let carers into his house and in the early stages, when he was capable, would cancel the care package. He wasn’t managing on his own though and would call me up to ten times a day and call the police up to five times a day because he was suffering so much from paranoia.
We live in Guildford, Albert is in Southampton, so it was a round trip of 100 miles to see him. I have two A4 sheets of paper full of contacts who have been involved in Albert’s care – social workers, community mental health teams, hospital staff, GPs, carers and pharmacists and not a single one of them was communicating with any of the others.
From February, things rapidly went downhill for Albert, who was in and out of hospital with two failed discharges. Every time the phone went, my stomach would churn anticipating something else had gone wrong. At a Best Interests meeting in March, we were told Albert should have one more chance to live at home and if that did not work he would have to go to a nursing home.
We felt that was already the case but didn’t know where to start. We explained that we were doing everything we possibly could, but didn’t have the capacity or knowledge to take on the responsibility of finding a home. Nevertheless, I was handed a book listing different care homes and told to apply for Deputyship.
After the second failed discharge and a period in hospital during May and June, we agreed that Albert couldn’t return to living in his own home and we were told we needed to find a nursing home for him. I am the carer for my mother, I work and we have other family members who need support and we live in a different part of the country. I felt utterly desperate and overwhelmed and explained I could not do it.
The next day, I got a phone call from an adviser called Bob who introduced himself and said he understood my Uncle needed a place in a nursing home. We had a good discussion about Albert and his needs and Bob said he would find some homes which were suitable for him and had vacancies.
Bob came back to me and explained he had called 30 nursing homes and found three that were suitable. He asked whether I would like to look at them and whether I would like him to accompany me. I said yes and it turned out to be enormously helpful having him with mee. Going with him took away the stress of having to locate the nursing homes and if I forgot questions, he would ask them.
It was really useful too because the three homes were completely different. The first was a new, state-of-the-art facility with beautiful rooms. But I couldn’t see Albert there – it felt too isolated and quiet and just not the sort of place he would feel at home. The second home was at the other end of the spectrum, clean but pretty basic and very dementia based. It would have been quite challenging for some visitors, although because I work in healthcare, it didn’t trouble me and of the two, it would have suited Albert more.
We arrived at the third home at lunchtime. As a dietitian, I was pleased to see the food was obviously home cooked and their eggs came from their own chickens. They also had an aviary with canaries as well as hens, kept rabbits and encouraged the residents to help in the garden in any way they were able to. Everyone was very friendly and I was told that residents are encouraged to leave their room and sit and eat in the communal rooms. The residents seemed very settled and similar to Albert in his present condition.
After seeing all three homes, Bob asked what I thought. When I told him I preferred the third, he said he thought that was a good choice. It was very reassuring to have him alongside me – not influencing or pushing me but helping me to have confidence in the choice I was making.