Susan ' Interview 07
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Susan began to notice a change in her mother’s behaviour; her mum was always flamboyant and sociable but she started to be a bit difficult and rude to people, which was very out of character for her. Initially Susan got quite angry with her mum but she started to realise that her behaviour was a result of her Alzheimer’s and she became more accepting. Indeed there were times when her Mum’s behaviour was amusing as she would say exactly what she thought, regardless of the social situation. Susan’s mother also started to become forgetful, which she initially tried to hide from the family.
Susan’s mother had a serious car accident and was taken to hospital where she stayed for several weeks. Before she returned home, Susan had aids fitted in the house to help her mother such as rails and handles in places around the home. She also removed rugs that might cause her mum to trip up, and put weights on tables that her mother used for support as she moved around so they would not tip up.
Susan investigated local care homes, in case she eventually became unable to cope with her mother’s care, but she hoped she would not have to use them and that her mother could remain at home in her care.
Susan’s mother loved her food, so Susan prepared 3 meals a day for her. Susan also bathed her mother twice a day (morning and night) to ensure she was clean and comfortable. Susan found caring for her mother was a process of learning how to cope with her Alzheimer’s and work around her mother’s forgetfulness and moods. Every day Susan would take her mother for a walk to help her remain as physically fit as possible and stopped her becoming bedridden.
Initially Susan did all the caring for her mum, which gradually took up more and more of her time. Her husband was very supportive but Susan realised that their family and social life were suffering and also she found she was becoming exhausted with the demands of constant care giving, so she employed a carer to live-in and help with her mother’s care. It was difficult to find a good carer and Susan had several agency carers before she found one that fitted into her home and was good at helping with her mother.
Susan gave up playing team tennis, which she loves, while she was caring for her mother although she was able to play singles and found that playing tennis was a tremendous break as she forgot everything else while she was on the tennis court. Susan also found that she no longer enjoyed leisurely shopping trips. Instead she would shop very quickly, making instant decisions about her purchases, and then come home and find that she had bought something that she really didn’t like very much.
Susan’s mother died at home. Susan had anticipated that the time was near and been assured that her mother, would slip into unconsciousness and quietly pass away. However her mother became very distressed and was in a great deal of pain at this time. Susan called her GP, but he didn’t carry morphine with him, so he had to collect it from the chemist, which took a very long time as he couldn’t collect it until the evening. Susan found it very distressing to see her mother in such pain for many hours and after her mum died she kept reliving the experience. She now dreads getting old herself in case she has to be hospitalised.
Susan was aware of her mother’s wishes regarding her funeral. Susan arranged the funeral but did not attend herself.
After her mother died Susan had to sort out all the legal paperwork and she found it was often difficult to deal with all the various systems at the banks etc. After her mother died Susan found there was a gap in her life, where she had been fully occupied caring for her mother she now had time on her hands. She plays tennis more now and gives occasional luncheon parties, but her social life is not the same as it was before she started caring.
Susan found her beliefs supported her during her role as carer.
Susan will always remember her mother as happy.
Susan was worried her mother who had Alzheimer's would find having different care workers...
Susan was worried her mother who had Alzheimer's would find having different care workers...
And subsequently as her condition deteriorated and you did you have to do more? Did you have find that caring took over more times?
As a matter of fact, I then went to an agency to see if I could get some help but the trouble with these agencies is they get people from Australia and South Africa and all places like that and only for two weeks because they reckon that two weeks people can just about put up with you and if it’s a nice job then it’s pleasant and if it’s not a nice job then well, it’s only for two weeks. And that’s fair enough, but for Alzheimer’s it’s a no-no because they really need somebody constant and so the agents really are not a great help for things like that. But I can I think for general illness they’re probably, it’s very good but for Alzheimer’s and certain older people and things they like having familiarity. So hopeless, you know.
And so it was beginning to affect my husband and we couldn’t go out with friends and so I, we had to try and get babysitters and things, and then I thought, “Well, we’ll get some care.” And I did get a wonderful Polish girl, who was an angel. She’d worked in [town] in a in a nursing home so she had great understanding and she came across and it was just as if heaven had sent me an angel and she was terribly kind and very jolly and very religious, actually, very religious person so I knew she was going to do her best. It was rather nice really.
Susan's mother could be disturbingly frank because of her Alzheimer's. This could be amusing but...
Susan's mother could be disturbingly frank because of her Alzheimer's. This could be amusing but...
We had some amusing times when we would have Mum sitting outside and some friends turned up at lunchtime, brought me a rose, standard rose, which was very nice of them. And so we held back lunch and we gave them a drink and Mum turned to them and said, “You know its lunchtime. You shouldn’t turn up at lunchtime.” And we all roared with laughter because, I mean she would never have said that normally. Oh, dear oh dear. And she was quite rude to another friend of mine, who came with a pair of very dark glasses and a beautiful hat looking most glamorous, and I think she thought she’d knock her down. She told her to take those silly glasses off if you couldn’t see her eyes and so she was, she let rip a bit and that was part of the illness really because they are like a child really. They say things that they shouldn’t say because they’ve lost that ability to decide which is appropriate and which isn’t.
Susan helped her mother feel less confused by making shorter sentences and giving simple if not...
Susan helped her mother feel less confused by making shorter sentences and giving simple if not...
And to begin with I didn’t really understand how to cope with things and I got very angry but then I realised that they couldn’t help it and so it became easier to cope with, and when she said things or did things or got angry. She did get angry and got a stick and, “[rrrrh]”, you know [laughs]. And so the best thing was to go out of the room for ten minutes and when you came back in again she’d say, “Hello. I haven’t seen you today.” And you’d know, you’d realise that she hadn’t remembered that she’d got angry so that was the easiest way of coping with that. And they only get angry really out of frustration so it’s a funny thing really but she was very happy and that, that is the thing that I think was nice and I shall always remember that. And the first bit of anger that comes in the early stages goes and they become calmer. So if you can get through that bit they do eventually, sort of get much more calm and they’re easier to cope with in a way. And they can’t remember how many children they’ve got or what their names are or anything like that. So it’s almost best not to sort of push that. It’s and also to make short sentences because they, they can’t really remember what you’ve said if you make the sentences too long.
So I learnt to make much shorter sentences and I also, when I gave them a tray of food, my mother, I used to leave it there. I didn’t take it away after she’d finished because that was an indication of what time of day it was and it helps to give them some idea of what time of day it is otherwise they don’t know whether they’ve had breakfast or what time of day it is and that, I found that helped a bit. She had more idea. I’d leave it there quite a long time. And also I found she couldn’t drink very easily towards the later stages so we gave her hot drinks instead of cold drinks because they can absorb hot drinks better and more easily and so we used to give her lots of tea and she enjoyed that and drank that quite easily.
Yeah, so we learnt as we went along. And she loved television but she couldn’t understand it but we used to put on things that were funny and she loved that, comedians and things. Once I went in and she’d got herself up in the middle of the night and she was watching pornographic sort of television and enjoying it and she said, you know, this man was in the nude and of course, she used to paint them in the nude. So she didn’t look upon it as a pornographic thing. She was looking at it as his form and, you know, everything. I thought it was hilarious really so [laughs] so we turned the television off. We put her back into bed again until the morning [laughs]. So you do get some very, very funny things happening and I think one has to look at it that way, you know, and not get all het up about it.
Because it is, they are struggling really to cope and best thing is not to draw attention, I think, to any mistakes they make, don’t correct them. I think it’s better to just let things go and be jolly and happy about things and then they feel happy. It, you know, goes, helps them really. But she was very happy and I think that’s the memory that I will remember. We used to put her out in the garden in a chair so that she could watch everything and the flowers and the birds and things. But as soon as she wanted to go to the loo she went back in the loo and then she went back to bed again so [laughs] that was hopeless in the end because you know, if she couldn’t remember that she’d been out in the garden so she wouldn’t go back out again [laughs]. So in the end, we gave up on that one [laughs].
And we took her over for Christmas and she enjoyed everybody sitting there and seeing everybody but on the way home she couldn’t remember. Sh
Susan thought her mother would have a peaceful death at home but her mother was in severe pain;...
Susan thought her mother would have a peaceful death at home but her mother was in severe pain;...
So you know that it’s getting near to the end and I was a bit concerned so I, I rang my brother and he rang a doctor friend of his who said, “Don’t worry. It’s going to be very calm. She’ll just go unconscious and everything will be very peaceful.”
So I relaxed on that, thought everything was going to be fine. It actually happened to be a bank holiday when she was, started to deteriorate and she then started to get very, very fussed and, and her hands started to go like this and I realised she was in pain and she started, “[aaargh] [aaargh],” And I thought, “God, we must get some morphine and, and help her.” And so I rang the doctor and the doctor, to my amazement, laughed and said, “Oh dear, no, we don’t carry morphine now and I chose, anyway, not to carry morphine after the Shipman affair and anyway it, I’d have to fill out a form and take it to the chemist and get it and it all takes time and all the rest of it. I’m afraid you’re too late for the daytime thing. You’ll have to wait until the evening.”
Well, this is this was twelve thirty so I had to stay with her from twelve thirty until eight thirty at night with her really screaming and being in the most awful stress and to me that is absolute cruelty. It’s such cruelty for those doctors not to be able to carry morphine. Some people make the excuse that it’s dangerous for them to carry them in their bags because people might want the drugs and they might pinch them out of the car. Well, good gracious, what’s wrong with chaining them to a box, a metal box? I mean, you know, there are all kind of ways of carrying morphine. You don’t have to make that an excuse.
I really feel, oh yes, and then the, eventually, two girls turned up. One was teaching the other and they came in and they proceeded to sit down and fill out an enormous form with all this going on in the sitting room next door and I could have hit them, at this point stage. I really could have hit them because all I wanted them to do was to relieve her and all they were doing was covering themselves by filling out this form and this girl was showing her how to set everything up. It took such a long time and it was a nightmare and my hands were dripping with sweat because I really found the whole experience absolutely dreadful. I felt so helpless.