Marcie - Interview 04

Age at interview: 72

Brief Outline: 10 years ago Marcie's husband Larry was diagnosed with Alzheimer's disease. Today he is completely dependent on her and Marcie gave up her job as a Ward Clerk to look after him. Most of Marcie's time is taken up with caring for him, which is restricting and isolating.

Background: Marcie is from Italy and met Larry, originally from Jamaica, in England. They have been married for over 40 years and have two grown up children. She became a carer at age 60.

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Marcie is originally from Italy. She lives with her husband of over 40 years, Larry, who is from Jamaica. About ten years ago, when their two children had left home and they were looking forward to beginning a new phase of their life together, her husband showed symptoms that got them worried. Eventually he was diagnosed with Alzheimer's disease. At that time, Marcie was working as a hospital Ward Clark, and she really enjoyed her job. As his condition slowly worsened, Marcie decided to take him on a holiday visiting old friends. While away she was with him all the time and she realised that his condition was worse than she had thought. She decided to stop working so that she could care for him full-time, making sure he was safe and well looked after.

When Larry still was mobile, they could go for walks or go shopping together. No one could see on him that he was ill at this time, and when they were out Marcie needed to keep an eye on him because some of his behaviour, such as spitting, could cause offence. He could also easily get lost, and once he went missing for four days. When he eventually turned up at a friend's house he was unable to remember where he had been.

As the disease progressed, looking after him became more and more physically demanding, and eventually Marcie was no longer able to help him up and down the stairs. From that time the isolation of being a full-time carer really set in. Apart from the home carers who come in to help with personal care, very few people come to visit. Having been used to a very social life before, this is a cause of great sadness for Marcie. Being housebound also means she is unable to visit her grandchildren very often and take an active part in their lives.

After having her carer's assessment she now has around 11 hours each week of respite. She tries to organise meeting up with friends and doing things for herself during these times, in addition to shopping and other necessary errands. What she can't do, and what she dreams of, is to have spare time to her self in her own home; read books and potter around. Although she is thankful for the home care that her husband receives, it means she can't do simple things like sleeping in an extra half hour in the morning or choose not to answer the door when they arrive.

Caring for her husband involves a daily routine of tasks that takes up most of her time. Marcie had not thought they would spend retirement like this. She is glad she is able to look after her husband and when he goes into respite in hospital for a two week stay, she visits him every day, making sure he is fed and looked after. She finds it hard to relax even when he is not at home. Despite this, she says, she never chose to be a carer. It is a difficult life and it means that she can't do things in life that she had wanted for herself, because her life revolves around another person's needs.

Marcy gave up work to care for her husband and says it had financial and social cost.

And spending two weeks, two whole weeks with Larry, everyday, every minute of the day with him, I did realise then that he was far more advanced than I had thought previously. Because I was out at work all day long and I used to leave him lunch and so on, and he used to, sort of, I don't know what he used to do but, I suppose wander around, or whatever. But being together then I realised how far more advanced the Alzheimer actually was. Because he was very paranoid and quite difficult to be with. And the memory was really quite bad then, worse than I thought, in fact. So when we came back, I decided to give up my job, because I was worried about leaving him on his own all day long. Which, in due time, I did. And of course there are costs. There are social costs, because I lost contact with all the people I worked -you know. And, of course, money, there is that cost. And there is also, because I like my job so much, there was the loss of some -of an activity which you really wanted to do and you didn't really particularly want to give up at that point in time. So there was a big loss there.
 

When life revolves around being a carer it may seem like a 'pretend' life.

People say, oh you get used to anything in life, you do, but, ah, there is, deep down, the knowledge that this is not really, -neither the life you would have chosen for yourself and it's not really real life, actually. You pretend. I spoke to a lady once who lost her husband. He had vascular dementia and I got to know her a little bit at meetings and then I saw her and I asked her about the husband because I didn't know and he had died. And I did ask her, I said, oh I said, oh I'm so sorry about it but I said, do you miss him? And she said, do you know what? She says, when he died, she said, I did realise then that we had pretended all the time that we were living the life, so we had kept to a kind of routine and trying to make believe that life was going on as it had been before. But, she said, it wasn't really real life, we had pretended, we had this sort of make believe. And that's what it is, you make believe everything is OK. You know, people ask you, oh how are you? And I always say, oh fine, we are managing. Because truly I have found that very few people want to hear that you are in pain. Because they don't want to, by acknowledging your pain they would have to take it on board themselves and they don't, they don't really want to hear that. They want to hear that everything was OK and yes, you're managing and that's good enough for them and, you know, fine. So you learn to pretend, quite a lot, unfortunately.

Marcie does not think hardship is necessary to grow as a person.

Well, I'm one of those people that, maybe wrongly, this is my personal view, I don't believe that hardship and suffering necessarily make you a better person. I don't believe in that. I'm not saying they've made me a worse person, but I don't believe in all these, some people go into it as sentimental, oh I wouldn't have missed it for the world because I've learned so much. Well I would have missed Larry's Alzheimer's very nicely if I could have done. I remember reading in the newsletter by the Alzheimer Society this guy who, he described his life with his wife before she died, and then he said, 'Oh I wouldn't have missed it for the world'. Well, I would. Because I think this ten years I could have done fantastic things. And I could have learned some, an awful lot. And I could have been with my grandchildren, I could have visited my sister who is not very well, you know, she's a little bit older than me. And so I' positive things; I've met some lovely people. And you do learn from them. And maybe I have learned -the thing that is positive, maybe I have learned to be creative with my time in very confined circumstances. This is the most positive thing. But I don't believe that my life has been enhanced by Larry's disease. First of all because I don't like seeing him the way he is suffering, possibly suffering. Even if he does not suffer physically he is suffering deprivation because he hasn't got his life really, basically. So I don't feel that that makes me good. I don't believe in that, I'm sorry, but that is my personal view.

Marcie grew up as a Catholic, but now finds that learning from philosophy helps more.

I don't know whether I have a religion anymore. I used to, well I'm a Roman Catholic because in Italy everybody is, most people are Roman Catholics anyway, so is Larry actually by the way. But we weren't practising. I don't, -I don't know what I believe in quite honestly. But this was nothing to do with the Alzheimer, it's sort of an evolution that has happened through the years. You know, as you grow older you question all kinds of things and I do, -what I have found actually was, I used to read a bit, I started with the Observer actually. They used to, -they don't have it anymore, they used to have a page called The Barefoot Doctor, and he was always citing the Tao and, you know, Eastern philosophy, Buddhism and things. And I found their way of thinking much more helpful. Because they deal with situations, you know, they, like they say, when the tension or the pressure is, -just let yourself go because you will reflate one day, you will float again, you will. You know they have, actually the imagery is quite good. I like the imagery of human situations, you know. So I found that helpful. That is, -it's not a religion but it's a spiritual sort of, but I am, I do believe in something, I don't know what I believe in. I do believe in good, in goodness of people, yes, I believe in something of the, maybe the soul, the mind or something. But it's not a formal belief. I haven't got any formal belief really.

So you don't have a congregation that you get support from?

No. I would go to church sometimes. I do go to church and I sit, because I like the quietness, there is nobody, there is one in [name of place] I quite like the quiet atmosphere. And maybe I light a candle but I don't know why. It's just a way of feeling that you're communicating with the whole of the human family really, basically. It's a sort of feeling that you are, trying to, to get in touch with the, all the people who, you know, are battling their particular battles. We are all here sort of struggling, aren't we? We are all strugglers. So that is the sense that, you know, the church makes me feel that maybe I'm in touch. There in the quietness and with, maybe you are sort of touching and reaching out for people who are struggling like you, or people who are not struggling even, it doesn't matter. So I have that feeling of, -I have a feeling that my congregation is really the human family. I have a feeling that we all belong together in this planet and we are all struggling and we are all sort of trying to get by and to sort of do our best. Well, most of us are anyway. And that is what keeps me going really. I do believe in something but not in any formal thing. So that is not something that would, -but reading about, especially about Eastern philosophy, yes, that's been helpful to me.

Marcie lost most of her friends, and thinks women are better than men at staying in touch.

So the women are better at keeping in touch and wanting, -they understand there is no fun here really but they understand the situation and they don't mind coming and they know that I benefit from it, because I like the company and I like the stimulation. And maybe Larry benefits from it as well. If his friends came and spent even an hour with him, maybe sitting near him, you know, and, I'm sure it would be quite nice for him. There is one, one man who lives in Liverpool and he always comes when he comes down from Liverpool, and he always comes to see him. But men are not, haven't been very good actually. And when I say that we knew a lot of people, we knew a really lot of people. I mean, Larry used to talk to everybody, you know, and made friends quite easily, so we knew a lot of people. But since he's been unwell we haven't seen not even half of them. Not even ten percent. I should imagine two percent maybe. Yeah. Which is sad. Yes, that's sad. But it's quite common I should imagine, you know.

She had a terrifying time when her husband went missing for four days.

There was this and he got lost actually for four days. He went missing. Yeah, which was terribly worrying. He went missing from a friend's house. We went visiting and they had a little bit of a tiff and he just walked out of the front door. And we thought he was just going out and coming back, and after five minutes it sort of dawned on me that he wasn't coming back for some reason. So I went looking for him. And of course, the neighbourhood is one that I don't know very well, and she unfortunately lived in a house which was like at crossroads of four or five roads. So when I went looking for him and he wasn't in sight, I didn't know where to go quite honestly, because there were so many roads that you could go down. So I thought maybe he was trying to make his way home, so I left. And I came back and he wasn't at home. And then I visited the pubs that he knew around the neighbourhood and he hadn't been there. And he didn't come back, and so, by eleven o'clock at night I had to report him to the police because he wasn't anywhere that we knew, you know. And he was gone for four days, in north London. So, that was a horrible time I remember, my daughter and I had really a terrible time because we were looking everywhere. I was, I didn't dare really leave the home in case someone phoned or he phoned, and she went looking everywhere and the police knew about it but I don't think they did very much. And the CPN did send out a fax actually to all hospitals in case -and he was actually taken to one hospital, the [name of hospital], and he went absconded. They checked him out, because he was found in the street, I think, and then he went, they left him on a trolley, because they wanted to check him again because he couldn't tell them his name and he couldn't really communicate anything. And he went missing for another 24 hours from then. So.

They didn't detect that he was in need of help?

No, no. They didn't. In spite of the fact that there was a fax. And in spite of the fact that the police were supposed to have a computerised, you know, -that he went on the national computer actually, but when they picked him up and took him to hospital, nobody had the wits to check whether there was anybody of that description sort of, reported missing, you know. And so we spent four days really, four days which were horrible because, you know, when you don't know what happened to somebody who is not quite capable of navigating the streets and the transport system and all that, it's worrying. But then he turned up at the friend's house on the Friday night. And they phoned me and I picked him up from there laughs. And he was a bit dirty, dehydrated, had lost a bit of weight, but no harm had come to him, somehow.

It can be difficult to find the time, but doing crosswords and learning Spanish helps Marcie deal...

But it's, it adds on, so if, although I would like to, because I don't have company I would like to read some of the books that I've had there and I haven't read. But, reading time is a very difficult to find because of all these interruptions and then the carers come to change him, I mean, there is always something that is sort of breaking to the, into what you want to do. And therefore, to find that time is quite, -but I give myself, I teach myself, I'm teaching myself Spanish. And I'm doing Sudoku sometimes which has become a little bit of an escape when I feel really stressed. I do a Sudoku or crosswords, or something like that. So I try to, what can I do? I try to do what I can to keep me, sort of, going.

Marcie makes plans to meet friends while others look after her husband.

I'm going to a friend tomorrow, she has a garden. But because she has got a bit of emphysema certain jobs she can't do. And I said I would like to help her because it would be good physically for me. 

So I said I would go and she is cooking lunch for me. So we'll do that and then I will scuttle off and come back. And that's fine. I try to arrange, you know, something that will fill a big chunk of the time and I will be with somebody. I won't be in the shops, I will be talking to somebody or doing something. I went to see an exhibition of Hogart work at the Tate two weeks ago. I met my old friend and we went together and we did it very quickly. There were ten rooms, we did it really quickly. But I saw, -I saw, surprisingly I saw quite a lot and I absorbed quite a bit, and I enjoyed it. It was very rushed but there you are, that's it. You have to try otherwise you never do anything.

She thinks every carer should get respite that suits their needs.

Every carer should have adequate respite. And by respite, -it's very difficult because there are obstacles in the way of, obstacles on money. But if I could design it without any considerations I would say, yeah, good respite every, I don't know whether every week or every month, but you should have some clear days in which for 24 hour period you do not have responsibility for the person that you are caring for. And moreover, sometimes, -you know when people come here and sit with Larry for three hours or five hours, like they do now, I don't have the house to myself, I never have the house to myself. And I miss that. Because I used to really love closing the door, maybe putting a piece of music on and pottering around and doing. -And these are the things that you miss so much in your life really. So you don't have the, so it would be nice to have, I mean this a utopia but it would be nice a place where it would be going from 8 o'clock in one morning until maybe 8 o'clock the next morning. Just go and you have your space and your time to yourself, and that would be fantastic. Maybe, you know, every fortnight, every month, but it's really a human need, that you need to, -I know it sounds cruel, but you need to be free, even visually, of the person you care for. Because it's becoming, it's become so intense now, the relationship, because you are so, you're always together and his needs are, you're always aware of his needs, but nobody's aware of my needs. Yeah. So there is that need of, -even if you don't have anybody here to comfort you, but at least your space is yours and it's quite' 

She enjoys time off now, but felt guilty the first time her husband went into respite care.

How long is he there for?

He can go up to two weeks. But I go and see him every day. And then I worry about him because, at the beginning when he was walking about I didn't worry too much about him really. Although it took two or three visits really for me to relax because the first time I felt awful. I felt guilty. I felt I was sending him into hospital without really him needing the hospital, I felt really awful, I didn't really enjoy it at all. But then I tried to enjoy as much as possible because it's my only chance really. But now I feel again very apprehensive because he is very needy now. He can't communicate his needs. 

I sleep better without him because he is quite noisy during the night, so I do get benefits obviously. And I can visit people and I can go out, in and out as I please, which is nice. Yeah, but I don't know what the best thing would be if you could really design a, -I'm trying to think what. But I think, yes, I think you need, you really need to be away from the person, you look for a little chunk of time.