seven - Ageing and care among disabled couples

Summary

Introduction

Mr and Mrs Eriksson (born 1946 and 1940), married for 36 years, both have multiple diagnoses. Mr Eriksson has had a developmental disorder from a young age and also has chronic pain. His wife has lived with illness since 1974 and was diagnosed with Parkinson's disease 12 years ago. Before her Parkinson's diagnosis, she took more responsibility for managing her husband's illnesses. However, having become gradually worse, she became eligible for personal assistance. As we talked about how two people with disabilities can complement each other, we also ended up talking about future concerns. According to Swedish assistance legislation, Mrs Eriksson is not entitled to more assistance hours because she is over 65. This causes her husband to reflect about future care when age and disability take their toll on them both:

Mrs Eriksson: ‘And, yes. Oh, I thought that I wanted to help him. So I try, but it's hard.’

Mr Eriksson: ‘I’ve been through so many trials and ordeals.’

Mrs Eriksson: ‘It's so hard to help you now that I’ve got this disease.’

Mr Eriksson: ‘Yes, I know. But I can rise to the occasion instead. I’ve been thinking about that we … I mean, I have an easy time seeing connections, like in charts. That's why I think about things in advance. And I have a lot of thoughts about how it's going to be when – as in a lot of people with Parkinson's when they become older, that it becomes worse – how I’d be able to handle that. Because she only has assistance from eight in the morning to four in the afternoon. And at nights, maybe she can't go to the toilet by herself. You have incontinence, you wet the bed and the bed gets soiled.… You’ve been really good lately, but of course, if I don't get my sleep – if I wake up at two or four in the morning because you need help – I wouldn't get a whole night's sleep.