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.
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.