Deciding whether to take on the role of carer for a family member can be a difficult choice.
There are many things to consider: Are you able to provide them the care they need? What will be the impact on you and the rest of the family? How will you juggle your other responsibilities?
This article outlines some of the challenges shared by people who have cared for family members to give you an idea of what you may experience.
Understanding what’s involved in the day-to-day care of someone with an illness or disability can help you make the right decision.
Informal carers in New Zealand
People who care for a family member are known as informal carers.
According to a report by the New Zealand Carers Alliance, most people care for someone at some point of their lives. This includes caring for a baby, an elderly parent, or someone with a disability.
At the 2013 census there were more than 430,000 informal carers in New Zealand, most of whom were women.
Of the 1.1 million disabled people in New Zealand, a third of those in private homes need regular assistance for personal or domestic tasks.
Family members are usually the provider of that assistance.
As New Zealand’s population ages and the number of people living with age-related illnesses like dementia increases, more people will need extra care, and more people will need to provide that care.
In 2016 there were about 62,000 people living with dementia, and by 2050 that’s expected to increase to 170,000.
Making an informed decision
Sometimes when people decide to take on the role of informal carer they don’t have all the information they need.
This was a finding of research by Elizabeth Edens, an occupational therapist who completed a Master’s thesis on adult children who decided to care for an elderly parent.
As well as drawing on her own experience caring for her mother, Elizabeth interviewed other women who also decided to become an informal carer for their mothers.
Some common experiences of the women were:
- They were led to make hasty decisions because of the circumstances, such as their mother being discharged from hospital. This meant they made a choice without having time to research the implications or talk to others about it.
- They were forced to choose between two difficult options: putting their mother in a rest home, which the mothers did not want, and taking on the caregiving role.
- There was a lack of knowledge around the scope of the tasks and duties they had to carry out. They also made the decision knowing little about what the role involved and how it would impact the rest of their lives, such as work, interests, physical and emotional wellbeing.
- They didn’t know what services were available to help them and what help they could get.
It’s important to familiarise yourself with some of the challenges of being an informal carer so you’re prepared if you also have to make a quick decision.
According to Elizabeth’s research, while the women felt they were unprepared for the scope of the role they took on, they all said it was worth it.
They said they felt happy and proud that they’d done their best for their mother, and they treasured the opportunity to share special times with them.
What’s it like to care for someone with a disability?
Elizabeth’s reflections of what it was like caring for her mother provide a good insight into what the experience is like.
She says despite being an experienced occupational therapist who worked with carers of frail and elderly people, she wasn’t prepared for the role she took on.
“I faced challenges at many levels over the time that Mum lived with me. It felt as though I had lost control of ‘time’. I needed to build my life around a schedule imposed both by the needs of my mother, both physical and mental, and also around the schedule imposed by the medical and social support services that we were utilising. In addition, there was a need to assist Mum in being able to sustain her role as matriarch of her loving extended family. As a consequence, I found that it was necessary to put my own personal goals on hold, in relation to recreation, education and work. There were many activities that were lost at that time.”
Elizabeth continued to work while also caring for her mother, but the family received government assistance to get someone in each day to help her mum do daily tasks like showering. The family arranged their own additional support.
“One of the best decisions we made as a family was to pay for a diversional therapist for mum, so that she had special time several afternoons a week which she looked forward to. Mum and her therapist used this time to go personal shopping, go to a café for afternoon tea, get her nails done, get a haircut, attend a community craft group, buy birthday/Christmas presents for grand-children, played cards, played scrabble, reminisced etc.”
Elizabeth says while caring for her mum presented huge challenges for her and the rest of the family, it was an enormously rewarding experience.
The responsibilities of an informal carer
It’s common to take on the role of informal caregiver without being fully aware of the tasks and responsibilities that come with the role. These might include:
Helping with daily living tasks
- Helping your family member with showering, teeth brushing, getting dressed and using the toilet
- Helping them to eat and drink, buying food and preparing meals
- Encouraging regular circulation exercises and movement, possibly based on a diet and exercise plan
- Doing their shopping, collecting and administering medications
- Cleaning and laundry
- Provide transport to any personal appointments such as the hairdresser or dentist
- Supporting them to maintain social or leisure activities
Providing emotional support
- Help your family member work through any challenges, and help them solve problems
- Be available for medical emergencies, including overnight
- Look for support groups that may help your family member and enable them to attend
- Schedule medical appointments and help them attend
- Be available to talk to medical professionals to clarify your family member’s history so they receive the right care
- Raise any concerns and issues with healthcare providers
- Dress and care for wounds or sores
- Monitor their mental and cognitive health status
- Source and operate any required medical equipment such as electric beds or pressure relieving cushions
Advocate on their behalf
- Act on their behalf to ensure they get the care they need
- Choose appropriate care providers and coordinate the services your family member needs
- Possibly take on enduring power of attorney if they can’t make their own decisions
- Oversee the financial aspects of caring for your family member, including insurance and tax issues,
- Organise bill payments and payments for private support services.
Coordinate family involvement
- Keep your extended family informed of any updates to the condition of the person you’re caring for, and any changes that are happening.
Deciding to become an informal caregiver for a family member is a significant choice. Many people who make this decision aren’t fully aware of what’s involved in the role. Taking the time to understand what it’s like to be a caregiver can help you make the right choice for you.
Last updated on Tuesday, 16 August 2022