4.8 Recognising the needs of carers

Caring for a person with Parkinson’s, a long term progressive condition, can be overwhelming and research has documented that carer burden may result in depression, stress, fatigue and even mortality (Hasson et al, 2010).

Research indicates that carers for people with Parkinson’s play an important role in the end of life care and death at home. Research also reveals unmet palliative care needs such as lack of information, ad hoc delivery of services and carers being unprepared for the stress and physical strain encountered at the advanced stage, and some carers being unprepared for death (Giles et al, 2009).

Carers of people with Parkinson’s have been found to have fewer social contacts, fewer opportunities to socialise and tend to experience poor health. Changes in relationships, conflicting needs of the person and carer, communication problems, financial problems and fears about the future are all common issues experienced by carers of people with Parkinson’s.

Reflective exercise

Use your reflection log to reflect on the following case study and identify the needs of the carer. In your reflection identify how to meet these needs.

Case study

Mr Thompson is an 86-year-old man who was diagnosed with Parkinson’s 15 years ago. He is married and lives with his 80-year-old wife, who is his main carer.

They have an extensive package of care in place to assist his wife in the care and management of her husband. Mr Thompson has expressed that he wants to live at home and does not want to go to a nursing home, even for short term respite.

Mr Thompson is wheelchair dependent, requires a hoist for all transfers by the care team and has an in-dwelling catheter. He requires assistance for all his personal needs and his wife assists him at meal times as he also has swallowing difficulties.

Because he previously suffered with hallucinations his oral dopamine agonists were discontinued which resolved the hallucinations. His Parkinson’s medication has been reduced to co-beneldopa 125mgs 5 times a day and co-beneldopa slow release 125mgs at night, but after one of his frequent admissions to hospital he was commenced on rotigotine patch low dose to reduce his rigidity.

Mr Thompson cannot be left on his own, so his wife can only leave their home when a family member is available to sit with him. Due to transport problems and his lack of mobility, Mr Thompson never leaves his home. This exacerbates his depression and he is sometimes verbally aggressive towards his wife.

Mrs Thompson has found this very stressful. Due to her age and personal ill health she has been finding it more difficult to manage her husband at home.

After Mrs Thompson had a hospital admission for angina, the family had a discussion about Mr Thompson’s future care. It was decided to arrange a permanent move to a nursing home, which was against Mr Thompson’s expressed wishes. Mrs Thompson felt very guilty she was not able to care for her husband at home and was distressed that he had to be cared for in a nursing home. This impacted on their relationship as he was angry with Mrs Thompson when she visited, resulting in her not visiting as often. Mr Thompson’s condition deteriorated and he died in the nursing home after a short period of time.

Discussion

In your reflection you may have considered the following:

  • Mrs Thompson’s need for respite from her caring role.

    Consider other means of respite at home, such as a sitting service for Mrs Thompson.

    Increased involvement of the family to relieve Mrs Thompson from her role.

  • The stress of feeding Mr Thompson with the high risk of him choking.

    Referral to speech and language therapy for support and education about positioning, type of food and methods of feeding Mr Thompson.

  • Carer stress Mr Thompson’s bouts of aggression.

    Referral to psychology (if available) for assessment and anger management.

  • Encourage increased interaction for Mr Thompson to relieve his stress and boredom and refer to occupational therapy.
  • Mrs Thompson’s guilt about not being able to care for her husband at home.

    Refer for counselling and ensure increased support from Mrs Thompson’s GP and social worker to manage her feelings.

  • Mrs Thompson’s guilt re not visiting her husband as frequently as he would wish because of his aggression.

    Encourage family to arrange rota of regular visits by family and friends and always ensure Mrs Thompson is accompanied when she visits her husband.

  • After his death, ensure Mrs Thompson has bereavement support from local support groups.

4.7.2 Preferred place of death

4.8.1 Supporting carers towards the end of life and death of people with Parkinson’s