Caring for someone with a terminal illness

Savita ' Interview 22

Female
Age at interview: 60

Brief outline: Savita's husband was diagnosed with Motor Neurone Disease in 2002. In the last year he has deteriorated significantly and now Savita is his fulltime carer.

Background: Savita is married with two grown up children. She is a retired Project Analyst. Ethnic background' Indian.

Audio & video

Savita is a fulltime carer for her husband who has Motor Neurone Disease. He was diagnosed in 2002 and up until the last year he has had a fairly good quality of life. In the last year his condition has deteriorated a lot to the point where he has lost all limb movement, he cannot swallow and is fed via a PEG feeding tube. Savita remembers when he lost the ability to eat, and describes how this was particularly upsetting and difficult to witness because he had enjoyed food and eating so much before.


Now Savita is always on hand to address her husband’s needs and feels she can never really relax. She has to administer his medication, his feeding tube and ensure he is comfortable by moving his limbs and arranging blankets and pillows. She is unable to lift him and so carers visit daily to move and bathe him. Before Savita’s husband’s condition deteriorated they had an extension built to accommodate his wheelchair manoeuvring and in anticipation of his worsening condition. This room is now set up with a hospital bed, walk-in shower, carer’s bed and all the equipment he needs. Savita describes how at the time they had no financial support or advice in building this, but feels they were lucky because her husband was a design engineer and so is very good at visualising spacing.


Savita discusses how she gets very little time to herself. Savita and her husband have two grown up children, but because they have jobs and young children themselves, they cannot provide much support. However, Savita discusses how it is a relief when they visit as it gives her a chance to talk to someone else. For four hours each week a carer from a charity called Crossroads visits and she has also recently arranged five hours per week of care from the social services, but this has not started yet. She does not believe that enough information is provided for carers to access help and support which is available. She recalls how she became very tired after having sleepless nights due to caring for a long time until a nurse suggested she asked for help with care during the night time. They now have a temporary night nurse twice a week, but if it had not been mentioned in passing she would never have known this service was available.


Most of the time Savita is happy to care for her husband, however sometimes it is very hard and she describes how it is monotonous doing the same tasks continuously. She feels sad that they can no longer share the things like they used to or have a proper conversations anymore. To communicate with one another her husband can whisper certain words, but for anything more complicated they use an alphabet board; Savita’s husband looks at the letters to spell words and she follows his eye movement. She is also saddened because she feels he has missed out on playing with his grandchildren.


Savita’s faith is important to her; she believes prayers have healing powers and describes how her faith acts as a support for her. She advises other carers that it is very important to have other people to share and talk about experiences with and believes carers should not have to fight to find the support which they are entitled to, as this only adds to the workload.
 

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