Caring for someone with a terminal illness

Maggie & Donald ' Interview 01

Female
Age at interview: 57

Brief outline: Maggie gave up work to care full time for Donald. Donald, aged 71 years, a retired civil engineer was diagnosed with a brain tumour. Donald died in November 2009 and Maggie is starting to adjust to a life on her own. She is looking at training for a career change in the future.

Background: Maggie was married to Donald for 33 years. She has 2 step-children and 5 grandchildren. Maggie was a medical secretary. Ethnic background' White British.

Audio & video

The first indication that Donald was not well came when Maggie had a phone call at work from Donald asking her to come home as he was feeling unwell. Maggie thought he may have had a stroke but when she did the tests for stroke it was clear that he had not had a stroke although his speech was slurred. This was very frightening for Donald and Maggie.

The next week when Maggie met Donald to go to their GP, and although he was usually a very good driver, his driving on this day was very erratic and he seemed to be unable to judge distances. The GP referred him to a neurologist and Maggie recognised the form as the cancer form for the local network. Maggie’s knowledge of medical procedures allowed her to understand what was happening and she telephoned her step-children to let them know that Donald may have a brain tumour. They discussed whether to tell Donald or not and it was agreed that as he always liked to be kept informed, Maggie would explain to Donald that he may have a brain tumour.

At hospital Donald had numerous tests known as a ‘stroke work-up’. He also had a Carotid Doppler, an MRI scan, blood tests and many other tests. A follow up appointment was set for 6 months later, which Maggie felt was too far away and she tried unsuccessfully to get the appointment moved forward.

Donald had further episodes of incoherent speech and episodes of confusion which were very worrying for Maggie. The MRI scan showed small vessel disease-cerebral but a talk with the GP was not helpful. Maggie was able to talk to the GPs where she worked to get information about her husband’s condition and any paperwork she might need to complete to get assistance. Maggie found it hard to know what to ask about and felt helpless. It was thought that Donald might have vascular dementia. Maggie turned to the internet for information about vascular dementia.

Donald’s short-term memory started to fail and Maggie pushed him to attend the Memory Clinic. For Maggie it was heart-breaking to see Donald struggle with tasks which he previously found easy, such as programming the video-recorder, or changing the blades on the garden strimmer. Donald felt lost when Maggie was away at work and although Maggie initially arranged a network of friends to come and sit with Donald, or she would take Donald to their homes on her way to work, she decided to stop work to care for him. It was a very stressful period for Maggie, as she adjusted her routines to care for Donald. She felt very alone trying to cope with the changes in Donald.

Donald was admitted to an emergency bed in the hospital after the results of the MRI scan. Donald was confused and distressed by the hospital procedures and as his condition declined Maggie gave emotional support to reassure him. Maggie found it very stressful dealing with the nursing provisions on the ward and felt she was constantly fighting to get the best for Donald, which was very draining. Seeing Donald being so unwell and unlike his old self was very upsetting for Maggie.

Tests revealed that Donald had a high grade very aggressive brain tumour with a life expectancy of weeks rather than months. The family were asked to decide whether they wanted Donald to be resuscitated should he decline further. Maggie and Donald had previously discussed dying and euthanasia so she was aware of his wishes not to be resuscitated. Donald wanted to die, refusing to eat and refusing further treatments; Maggie supported his decisions. It was a great comfort to Maggie that she and Donald had discussed his wishes previously.

When Donald’s condition deteriorated he was placed on palliative care. Maggie stayed with Donald sleeping in his room at the hospital. It was very upsetting for Maggie to see Donald distressed and in pain. Donald died when Maggie had left the room briefly. Maggie and her step-son sat with him for a while.

Maggie was prescribed an anti-depressant while Donald was ill but the side effects were unacceptable, so she stopped taking them after a short period. Maggie had 3 sessions of counselling after Donald’s death, but she did not find it helpful at that time. Maggie found much comfort in the love and support of her family and friends throughout Donald’s illness.
 

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