Caring for someone with a terminal illness

Tricia - Interview 27

Age at interview: 59

Brief outline: Tricia's mother is 84 years old and has dementia. To begin with Tricia took on a lot of the caring responsibilities. However, as her mother became more confused she moved into a care home. Here she seems much happier and receives good quality of care.

Background: Tricia is married with one grown up son. She is a retired clinical nurse specialist. Ethnic background' White British.

Audio & video

Tricia first noticed signs of her mother becoming confused when she started forgetting places she had visited and how to cook certain things. Her mother was admitted into hospital after hurting her back and it was clear to Tricia that her confused state had increased when she returned home. Tricia was also concerned about her mother’s mood as she often stayed in bed and ate very little. A care package had been put in place, but when Tricia voiced her concerns, the healthcare visitors dismissed them and said that she was fine. This was very frustrating for Tricia as she knew her mum was not being her normal self.

During this time her mother was given a CT scan and initially Tricia was not told the results. For months Tricia and her brother tried to get the results but with no success and eventually they got her mother to sign consent. Tricia describes how it was difficult to persuade her mum to sign this consent while also being careful not to alarm her. Once she had obtained consent to be involved in her mother’s healthcare Tricia managed to get antidepressants prescribed and also demanded a proper mental health assessment for her mother.

Tricia’s mother had a mental health assessment at the local hospital and to Tricia’s dismay scored well, so again her concerns were dismissed. This was very frustrating for Tricia because she was witnessing her mother's confused behaviour daily. She recalls examples such as her mother putting refrigerated food into cupboards and not taking care of her personal hygiene. During this time Tricia’s mother also became paranoid; her confusion meant she was constantly losing things, but she believed that people were stealing them. She often accused Tricia of stealing clothes and change out of her purse, which was very upsetting for Tricia.

Eventually a social worker visited to assess Tricia’s mother. The social worker recorded a whole history and actually witnessed her mother’s confused behaviour first hand. The social worker confirmed there was a problem and Tricia describes how she felt her worries had finally been validated. She then arranged to change GPs and for a psychiatrist to visit. The psychiatrist listened very attentively and immediately diagnosed Tricia’s mother with dementia and paranoia. Tricia continued with a lot of the caring responsibilities with help from her family and private carers. Tricia also has cancer and is often left with little energy after treatment, but whatever energy she did have she used to care for her mum.

Recently, Tricia’s mother was admitted to hospital after falling and breaking her hip. After treatment, the hospital assessed that she was fit enough to go home rather than to a rehabilitation centre. However, Tricia and her mother’s carers felt she was not well enough and believed her dementia had been completely overlooked. Tricia’s mother needed 24 hour care and they decided a care home would be the safest place for her. Tricia found a care home which has lots of activities and good quality care. Now her mother is settled in this care home and Tricia describes how although her mum does not necessarily know where she is, she is very happy and appears less stressed now.

Tricia’s mother being happy in a care home has given Tricia and her family great relief. The private care her mother has needed throughout has been very expensive and Tricia feels lucky that her mum had enough savings to afford it. Tricia advises other people in similar situations to be persistent and get help as early as possible.



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