Parkinson's disease

Caring, care and carers

Parkinson’s disease is very variable and may progress very slowly. When first diagnosed most people worry about future incapacity and who will be able to care for them, though many people have Parkinson’s for a long time without needing high levels of care. And they may never need the highest level. But the image of increasing dependency disturbs both the person who has received the diagnosis and others who realise that they may at some time have to become carers. In time patients and carers can come to accept the unpredictability of Parkinson’s and ‘live for the day’ but they still remember their initial feelings.

Partners of people in whom Parkinson’s disease was diagnosed when they were younger, now found themselves in a caring role while still relatively young. Plans they had made for the future once their children had grown up had now changed. Some carers whose partner or spouse was of retirement age faced a different retirement from the one they had expected.
However because it is not the carer who will suffer the disease carers find it difficult to get help and understanding of their feelings. Anna was wary of discussing Rafa’s Parkinson’s behind his back and yet was unwilling to share with him some of her concerns in case this made him feel worse than he felt already. Fiona worried about the future and how things would work out. Her husband did not want to tell anyone at first about his diagnosis, and not being able to discuss her worries with others made her feel very isolated.
The carer, especially in the early days when they have no actual caring duties, is never- the less affected by the changes occurring in the person they live with.
Stephen’s wife left him soon after he was diagnosed but most spouses or partners stayed and struggled to get their role right. Long before there are serious physical needs people had to learn the difficult balance between the desire to help against encouraging independence. They may have to suppress any fears they have about the future in an attempt to keep their partner from descending into depression.
Mari did not want to interfere or seem bossy but all the time she was having to weigh up just how much she did for Humphrey and how much to leave him to do himself. While Anna and Rafa usually saw his consultant together, Mari left Humphrey to go on his own. Reflecting on that now she thinks that if he wasn’t owning up to his doctor about all the problems he was having she could have contributed what she’d observed, and that might possibly have made a small difference to his treatment. Now, after Humphrey’s death, she wonders if by intervening she could have affected his drug regimen in a way that would have improved the control of his symptoms.
Of course many carers did help with such things as dressing, cutting up food, washing and driving. While they wanted to be the ones to help their partners, it affected other aspects of their lives.
Brian relied on his wife to set up the pump for delivery of his apomorphine. Fred felt that the burden he put on his wife was excessive and that had they not been able to pay for a carer to come in during the day she would no longer be able to have any life of her own. As it was, he was concerned that when they travelled together she could barely manage the problem of getting him through airports and onto planes.
Financial benefits were not always available for people with Parkinson’s disease if their partner was still working. Fiona who was still in her forties had already decided that she would take early retirement if a time came when her husband needed to be cared for. Steve whose wife was working got no financial help towards his care. Alan said that in applying for help it was essential to make it clear how difficult things were rather than put a brave face on them. His wife received a carer’s allowance. Stephen as a single parent got some help through ‘Carewatch’. He was anxious that as his children grew up they would not feel that they had to be his carers. Ruth’s daughter received a carer’s allowance so that she could help her mum with day to day living. Geraldine had paid care when her partner was away, to help her take her pills when she became rigid and couldn’t move during the night. Penny, who didn’t need much extra care now, worried about who would give it if she did reach that stage.
Isabelle decided that she would care for her mother when she could no longer live independently. This involved major changes in her family life. They moved to a house which could accommodate her mother on the ground floor. They created a room with en-suite toilet facilities and increasingly needed to arrange for carers to come in during the day as both Isabelle and her husband worked full time. Their two small children would sometimes have to take second place to their grandmother who, while not demanding, presented many crises which left Isabelle exhausted and as she saw it having to neglect the children.
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After a series of emergencies and finally a fall which took her mother into hospital, both Isabelle and her mother considered arranging care for her in a nursing home. After a conscientious search for an appropriate one, she was transferred from hospital to a home not far from Isabelle, where she is well treated and contented. The home they have chosen is not cheap but Isabelle said that it didn’t seem so much when compared to the cost of having carers in their house and the difficulty of getting satisfactory respite care.
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The decision to move someone into care is rarely easy. None of the older people interviewed seemed to be contemplating this move. Instead they were making sure - with some financial support through their occupational therapy departments - that their houses were made more suitable for their situation. Many people had been offered supports for their staircases and baths. Some had bathrooms transformed into shower rooms. Bedrooms had been moved downstairs. Both Geraldine and Andrew had had stair-lifts installed. People had a variety of manual or electric wheel chairs and Brian had a chair which could deliver him into a standing position or allow him to lie back as he wished.

Last reviewed May 2017.
Last updated May 2017.


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