Marcie - Interview 04
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More about me...
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.
When life revolves around being a carer it may seem like a 'pretend' life.
When life revolves around being a carer it may seem like a 'pretend' life.
Marcie does not think hardship is necessary to grow as a person.
Marcie does not think hardship is necessary to grow as a person.
Marcie grew up as a Catholic, but now finds that learning from philosophy helps more.
Marcie grew up as a Catholic, but now finds that learning from philosophy helps more.
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.
Marcie lost most of her friends, and thinks women are better than men at staying in touch.
She had a terrifying time when her husband went missing for four days.
She had a terrifying time when her husband went missing for four days.
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...
It can be difficult to find the time, but doing crosswords and learning Spanish helps Marcie deal...
Marcie makes plans to meet friends while others look after her husband.
Marcie makes plans to meet friends while others look after her husband.
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.
She thinks every carer should get respite that suits their needs.
She enjoys time off now, but felt guilty the first time her husband went into respite care.
She enjoys time off now, but felt guilty the first time her husband went into respite care.
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.