Customer Stories
Some of our customers at our Wellbeing Centre have agreed to let us tell you their stories:
David
David's wife Sheila attends the day care service at Fenwick2 two days a week. David says the service is invaluable to him. “It gives me a period of brief sanity from 9am to 4pm,” he said. “Sheila asks me every day if I am taking her to Fenwick2, and I have to tell her it’s a Saturday.”
David said he had a battle to get a diagnosis of Alzheimer’s for Sheila or to get help and support from other agencies, although he had some useful contacts with a community mental health nurse. Unless you can prove poverty, he said, there is little help available.
“I threatened to kill my wife one Sunday night,” he said. “When you are living with someone who is waking you up at any time of the day or night it becomes very difficult. Sheila needs everything done for her and when I’m at home I can’t do anything else. “When I eventually got through to a psychiatrist and saw her about Sheila she said I needed a week’s respite, otherwise I would crack up.”
David has been given another day of respite care nearer to home on a Wednesday, at a centre run by Help the Aged, but would welcome help seven days a week if it was available.
He values the fact that the SCA-run day care service at Fenwick2 is run by a not-for-profit social enterprise. “So many organisations in this field are set up to make money, and care homes are very expensive. I also question the quality of some care homes. Over and over again I have listened to some very sad stories from friends about the way their loved ones were looked after – it’s a disaster.”
David says he finds his caring role very frustrating, exhausting and depressing. “You have to do everything – the laundry, all the household tasks, as well as helping to get Sheila dressed and washed. She can’t sleep very well so I am often up at 4.30am. I don’t have a life.”
The respite days are therefore a Godsend, as David can do the household tasks he needs to do, but without interruption. Although he is retired he no longer has time for the hobbies he used to enjoy, such as motorbike riding and sailing.
“I’m extremely grateful to SCA Group,” he said. “Everyone here is very responsive to our needs and the staff are exceptional. I have the greatest respect and admiration for all the carers I have met here.”
Sheila
Sheila, David’s wife, is obviously an intelligent woman who struggles hard against the disease she has been diagnosed with. “It was not till we came here last September that we realised how good it was,” she said. “If you have Alzheimer’s you feel odd anyway. Coming here, people accept you as ordinary and are so kind and considerate. I look forward to coming. You get the chance to talk to different people, of all ages, instead of being isolated at home, and that’s good. The quizzes are good – it makes you use your brain, or what’s left of it.”
Sheila started losing her memory in 2007. “My mother had Alzheimer’s and I noticed that I was beginning to lose my memory. The GP laughed at me at first. But living with my mother, I knew what it does to people.”
Sheila finds both her condition and the burden it puts on her husband very distressing. “I’ve been used to being busy all my life and I hate having nothing to do. It’s horrible. I don’t trust myself with names or anything and I hate that. It’s as if the past has been wiped out. Having lived with my mother I was used to it but you never think it will happen to you. “David finds it very difficult. I’m not allowed to drive anymore and it upsets me that I’m making his life a misery.”
David has written some facts down in a diary for Sheila so she can remind herself of things in her past. This helps her remember that she went to RADA and worked with Kenneth Williams and Sheila Hancock. “My father did not want me to go into acting but I did,” she said.
“One of the reasons I like coming here is that when you feel sorry for yourself, you can see other people who are worse off physically or who have to put up with a lot more, and that brings you out of it.”
Kenneth:
Kenneth, from Bournemouth, brings his wife Olive to the wellbeing centre two days a week because he knows someone that works there. He says the quality of care is also very important to him. “It’s wonderful,” he said. “She meets other people here and it gives her the opportunity to have discussions. It gives me the opportunity to do things, confident that she is being well looked after.”
Olive had a stroke in 2001 and was diagnosed with dementia soon after. “It’s very difficult to live with. You can never communicate very easily. It’s almost impossible, no matter how much you try. Within a second it’s forgotten again. It’s worse than bringing up children. “It ties down your day completely and you also have to organise washing, showers and toileting for your loved one.”
Kenneth still runs a business, so the respite days are invaluable to him. “Normally the business takes second place. Occasionally I have respite care weeks – you need to be able to get out.
“The respite days are essential. I start at 6am to get Olive washed and dressed to come here. But I have no worries when I leave. There’s only one local authority day care centre for dementia to my knowledge in Bournemouth but it’s full and very difficult to get into.”
Janet
Janet, from Southampton, says there are very few facilities for people with dementia where she lives. Her husband Terry was diagnosed four years ago. “Caring for Terry has to be the most difficult thing I have ever done,” said Janet, who used to run a restaurant and also taught in a school.
“He has some insight and he fought the diagnosis at first, but since he has accepted it, it has become easier.” Janet explains what this means. “If someone says they have not got memory problems, the only way they can explain strange situations is to blame them on other people. For example, my daughter borrowed £20 from Terry and then rang to talk to him about returning it. He denied he had ever given her the money. He thought we were ganging up on him to make him look stupid. It made him a little paranoid. Now it’s easier because we blame everything on dementia.
“You learn over time that Terry can’t change. He’s fighting the battle but I have to fight the battle for him as well. Once we shared all the decisions we made but now I have to make them all. It’s a huge loss. He’s still lovely but he’s not the same man.”
Janet says the repetitiveness associated with memory loss can be very frustrating. “Within seconds he’s lost it again,” she said. “He repeats questions again and again and can’t remember the names of children or grandchildren. There’s an ongoing loss and sadness about that and it is relentless. You lose your family too. Terry finds it too stressful to be around the noise of the young grandchildren so normal, everyday happy life with your grandchildren is difficult. Physically Terry’s mobility is OK and he can do everything. But I find it very frustrating to think about what I have lost.”
Terry’s condition has improved since he has been on medication (Aracept). “He got aggressive at first, before he had the medication, and was agitated and hardly talked. He kept trying to go out and we had lots of tussles. Terry kept phoning the school where I worked and he nearly set the kitchen alight when he tried to cook. “But the medication helps a lot and brings everything back to a level you can cope with. It brings back the person’s personality. Luckily Terry had no side effects with it. Within three weeks I had 50% of Terry back. We went on a Memory Matters course and that was very useful. It covers everything you need to know. It gave you strategies and made so much sense.”
Janet also values the respite centre at Fenwick2. “It’s fabulous. I never thought that Terry would suit day care as he’s outgoing and very together and puts on an act for everybody. When he gets home he is exhausted, but he loves it here. This centre is very different because the staff engage the members. He does so many things here and they feed to his strengths. Everyone here is amazed at the difference and the amount of good it does. The centre boosts their ego. The members are involved in the quizzes and games and other activities. On the plus side, I have also gained lots of friends through relationships with other carers. The first 18 months were very isolated and I knew no-one, but now it is better. When I leave Terry here I open the windows in the car and I breathe. It is my time for 6-7 hours. Normally we are together 24 hours a day and I can’t even go to the hairdresser. Terry often tries to help me and I find all my shelves have been taken down or he tries to cook. This is the only time I get off. It is fabulous.”
Peter
Peter, from New Milton, has been married to his wife Pat for 56 years. Pat has had memory problems for ten years. As a bright, educated woman, this makes life very difficult for her. Her eloquence made it difficult to diagnose the extent of her memory loss and she was used to reading and intelligent discussion.
Peter found out about the respite centre at Fenwick2 after trouble with finding provision locally. He was initially offered a day a week at a local authority centre in New Milton but there was a waiting list. Later he obtained a day of care in Lymington and was told that, combined with the day at Fenwick2 that he pays for, he was lucky to have that provision. But as Peter has glaucoma, he may have problems renewing his driving licence, so driving Pat to day care could become a problem.
“I love Pat,” he said. “I find the shopping and cooking easy. But Pat was interned by the Japanese when she was 11 years old, and in the last six months she has developed obsessive behaviour. She packs everything away and then hides it, particularly food and toilet paper. She has many handbags all stuffed with toilet paper and she believes the Japanese are on the bridge at Brockenhurst. It can be annoying at times.”
Peter is very happy with the respite service at Fenwick2. “It’s fantastic – the best service I know,” he said. “The people who care here are good at their job. There’s a businesslike attitude. Pat has accepted coming here.On my day off I catch up on my sleep, do the shopping and cooking and I empty some of the bags Pat has packed. I really appreciate the service.”
