Caring for someone with a terminal illness

Heather & Bill ' Interview 09

Age at interview: 66

Brief outline: Heather cared for her husband who had pulmonary fibrosis. Heather talks of her role as a carer and also the need for some activities to help relieve the stress of being a carer.

Background: Heather is a retired GP practice manager. She has two adult children. Heather is a widow. Ethnic background' White British

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Whilst the consultant was somewhat reluctant to say that Bill had pulmonary fibrosis and that it was terminal, Heather insisted on knowing; based on what she had researched on the internet she was able to ask relevant questions and how long Bill had got. The consultant gave Bill between 4-5 years. Heather felt she wanted to make the most of their time left together, but she felt Bill gave up a little.

At the time Heather felt it was easier to know a timescale rather than to keep wondering is this terminal? However Bill lived well past the 4-5 years that the consultant had originally expected and this was a difficult time for Heather. Caring was becoming very hard and she no longer had a time boundary to work within. Both Heather and Bill both found it difficult to see each other so distressed. Heather now wonders whether in fact it was a good thing to have a timescale.

Heather’s expectations of care support were met. Because of Heather’s job she knew many of the health carers, district nurses and GPs and she feels they had great care even out of hours. There was never a time that she felt they were waiting too long for care. All the care team were very supportive of her as well as Bill. Often the nurses took time to have a chat to Heather and to make sure she was Ok.

Heather often felt that she struggled to be the perfect wife and the perfect carer. A lot of the time she felt exhausted as she was never able to completely relax in case Bill needed her. Heather found it most difficult to cope on the days when she was tired after a disturbed night looking after Bill.

Whilst Heather had plenty of information about Bill’s health she found it difficult to know about and then access any benefits they might be entitled to. In the beginning it was very frightening to think they would have to pay for all the care they needed as it would take every penny they had and then Heather would have nothing to live on in the future. Fortunately the care manager helped with all the applications but they had to go to several panels before they were approved, which was a very stressful time for both Heather and Bill.

Bill had a bed downstairs and during the day Heather would spend most of her time sat with him. Bill, loved watching News24 and as Heather was not keen on the news programs she would go into the lounge to watch the soaps which she enjoyed. However her viewing was often interrupted by Bill needing attention. Heather still slept upstairs in their bedroom and if Bill hadn’t called her in the night she was always scared that she might come downstairs and find he had died in the night.

The Macmillan nurses and the respiratory nurse who visited to take care of Bill also took care of her and would listen to her and reflect on how much care and support she was giving Bill who they knew could be impatient and difficult, due to his declining health.

Bill was often lonely. Heather’s local friends would often visit her, but Bill’s friends did not visit so often. Visitors could be another strain for Heather. Although some would visit for a short time, bringing her magazines and having a chat, others stayed too long and interrupted her care activities. Visitors who lived a long way away would need to stay when they visited and again whilst it was lovely to see them, the additional pressures of caring for them as well as Bill made Heather feel stressed.

The Carers Centre supplied Heather with a ‘sitter‘ for Bill three times a week, so she could go out for a couple of hours. However, Heather used to get into a panic going into town. While she was out she would be constantly checking her watch, making sure she had her car keys and parking ticket. So although Heather appreciated the time off, she found it hard to enjoy the break as she was always worried about Bill and getting back on time. Heather also joined a local health club, to help her get out of the house and to help her relax. The health club is also a place where Heather has made several friends who have been very supportive.

Bill had respite care on a few occasions. Heather spent a lot of time every day with Bill while he was in the hospice, but was able to have a break from caring and get a good night’s sleep at home. Bill was in respite care in a nursing home when he died. Heather wishes she had kept him home at this time but also feels that he was holding on so he didn’t die at home and make it difficult for her to live in their home afterward.

When Bill died Heather missed all the nurses and carers visiting or telephoning. It was very quiet around the house. It was very hard to get used to a new routine which did not revolve around Bill’s care.

Initially Heather thought she would move after Bill died but in fact she is still in their home and enjoys her happy memories of her life there.

Heather loves swimming and continues to swim regularly and meet with her friends.


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