Peter
Peter’s wife self-funded care from age 77.
Peter’s wife was diagnosed with dementia at 71 and they moved to a smaller house which was purpose-built for her needs. They paid for adaptations and equipment for the house as well as daily care as she gradually needed more help and support.
Peter, aged 84, is a retired chartered engineer. He is widowed and has four children; his daughter is a doctor who has experience of older people’s health care. Late in his career, Peter studied for a post-graduate degree in law. Ethnic background: White British.
More about me...
After a few years living with memory problems, Peter’s wife was persuaded by her daughter to see a doctor. She was diagnosed with mixed dementia. Peter and his wife carried on with their usual activities and holidays for several years while Peter increasingly cared for his wife. Their GP recommended a not-for-profit organisation that could provide daily care at a reasonable cost, however, they had to find a new provider that could offer occasional overnight care when Peter was away. Peter found out about care and funding through searching on the internet, word of mouth and attending a carers’ group for men at the Alzheimer’s Society. He has found the Local Authority helpful and recommends the Age UK website. Most of all he feels that he could not have managed without the help of his family. The cost of care was paid from their income as Peter and his wife both had good pensions.
Peter’s wife received the higher rate of Attendance Allowance. The local council adult social care department carried out a needs assessment to set a care plan but Peter knew that he would not receive any help with funding so he refused a financial assessment. Almost ten years after her diagnosis, Peter’s wife was provided palliative care at home through the NHS. This continuing healthcare meant that the cost of care would be paid by the NHS, however, after only 2 weeks, Peter’s wife died and he did not apply for the funding.
Peter drew up the LPA himself and had it certified with a solicitor.
Peter drew up the LPA himself and had it certified with a solicitor.
Well again that was ad, advice that came first from the men’s group and we did get people, sort of, come and give us talks about Power of Attorney, solicitors that would help. So I fancy I know a bit about the law so I [laughs] I just, you know, got information and did it myself and it’s authentic, you know, it, I’ve had the all the stuff and I’ve lodged it with a solicitors, you know, but he didn’t arrange it for me; I wasn’t going to pay his fees for doing something like that [laughter] you know. I may regret that as well [laughs]. So I’ve got two sons in this country who are both, have my Power of Attorney, but I if I’m going to go insane or whatever I have to register that before I go insane. They have Power of Attorney but it’s, it’s not in their hands to do anything at the moment until I say please do it so I’ve got to gauge when I start to make stupid mistakes.
Peter went to a monthly carers group for men run by Age UK.
Peter went to a monthly carers group for men run by Age UK.
During that time Myra had started to show obvious signs, mostly inability to understand- that’s frontotemporal, I think, I didn’t know that at the time, and also she started to be unable to communicate very clearly, and that got worse as we visited. The doctor didn’t really give us much information; he said to me, when she was obviously getting in need of a bit more attention, because in the first months there wasn’t anything obvious he said, “Well, you know, there’s a men’s care group meets here every month and it’s run by Age UK, or whatever they were called at the time. So I, he recommended I attend, which I did, and I started then to pick up information.
Peter appealed the decision when he was refused a disabled parking permit for his wife.
Peter appealed the decision when he was refused a disabled parking permit for his wife.
She started to get difficulty getting into the car, she couldn’t understand how to get into the car, and for a while I would open the car door and back her to the seat and then virtually throw her [laughs] onto the seat, move her legs round, sit back, belt on and because of that I needed a lot of room so I applied for a parking licence disabled parking and I got refused on the basis of Alzheimer’s wasn’t a disease of the disabled.
So I appealed and on appeal I got it cleared, so we then…
So they didn’t do a, because I mean a diagnosis doesn’t tell you what people’s abilities are really does it?
No, no.
So did they not meet Myra and do that?
Well not until I appealed. I applied and I just answered the questions on paper [laughter] and they, they, I then appealed and they had called us to a meeting and I went through and demonstrated the problems [laughs] and they, obviously they saw it then. Mostly it was she was still then walking OK, it’s just that she couldn’t manage things.
Peter’s wife died just before applying for CHC funding for care at home.
Peter’s wife died just before applying for CHC funding for care at home.
Myra died two years, two weeks later, it never got to the stage where I got any, I had to pay and then they would refund, I never got to the stage and I didn’t really want to pursue it. So I did pay for that but it would have been, if it, I know someone who’s had it for six months, palliative care is free, well free to the individual, you know?
So that’s a good function and if it’s still happening you know, I think that was a commendable arrangement.
Peter found the needs assessment helpful but refused to have a financial assessment.
Peter found the needs assessment helpful but refused to have a financial assessment.
She said, “Well you ought to apply for an attendance allowance because she’s, there’s two levels of attendance allowance, you should, and she certainly should get the lower one.” So we applied and in fact we did get the full one, after an interview with Social Services, and of course having to go through the process of care plans and all the rest of it and at that stage I started to learn that any help you got from Social Services would be paid for on the basis of the level of income we had as a family. so I refused to participate in giving them any further details on that, because if I’m going to pay that’s my problem, I [laughs] I don’t want you fiddling about, you know what I mean?
Peter designed his new house to work for his wife’s disabilities.
Peter designed his new house to work for his wife’s disabilities.
I needed some help. We arranged with Social Services, we, something they do provide is advice over the state of the house and things like that. After we’d been on the second holiday, on the first holiday in Nepal, I realised that that house was not going to be very suitable to keep her out of a care home so we had this land at the back of the house with the access to the bottom, it’s an orchard here, so I decided to build on this plot. My youngest son by that time was a quantity surveyor, his brother-in-law was an architect, so I got good access to [laughs] help and obviously with selling a house like that I could get a mortgage while we were still living there to finance this. So the architect, my son, myself, decided on the layout based on what we knew at that time; so we’re essentially a ground floor living with a sitting room; this is called the courtyard because the architect [laughs] wanted the area between the two buildings to be, and he wanted it sort of paved like a courtyard, but I wouldn’t have that, couldn’t hang my pictures on it [laughter] with an en-suite bedroom and then it was at that point I decided to ask for help with identifying things, so things like handrails, which you can see we had put in. At the time we had a shower cabinet in there which Myra could get in and out of, no problem, with help and slowly that got to the stage where she was having great difficulty getting in. So I decided to ask help from a commercial organisation that did wet rooms.