In May and June 2008 we asked about your caring roles and responsibilities and how these fit into your life, and to learn about further support that would be of help.
The Caring Roles and Responsibilities questionnaire was launched at the end of April 2008 in conjunction with the launch of the Government Carers’ Strategy.
The questionnaire was for Couch members who are in a caring role. It looked at different aspects of their role as carers, including who and how many people they care for, the types of support they receive (eg information, training, financial, social), and any issues they have or compromises they have had to make as a result of this role. It also measured carers’ awareness of the new Carers’ Strategy.
Summary of results
Thanks to the 296 Couch members who shared their experiences as carers.
Most carers in this questionnaire were a close relation of the person being cared for, and most of the care provided was long term. Many reported that because of their close relationship to the person in need of care, they felt a duty to look after them. Many also expressed a willingness to make these sacrifices to give the person whom they cared for a better life experience than otherwise.
Two thirds of respondents were in paid employment in addition to their role as a carer, with more than half reporting that they had adjusted their work schedules to fit their caring role. About one third of respondents had stopped working altogether due to the difficulty of balancing work and caring responsibilities.
The most common task in Couch members’ duties as carers was to provide emotional support. Other common tasks included providing financial support, help with everyday tasks, and transport and physical support for the person in need of care.
Less than one third of carers said they had received some sort of formal training on how to care for someone else and just over half had received some information on the subject. Most of those who had received training had done so through their workplace or had undertaken personal training. Many of those who had received some information got it from a health professional, or a non-government organisation.
Less than one third of respondents said they received some financial support, most commonly from Work and Income. A slightly higher proportion of respondents reported receiving other types of support, most commonly respite or carer support.
A high number of respondents replied that they were either dissatisfied or very dissatisfied with the level of support available. Almost one third of respondents reported that they were neither satisfied nor dissatisfied with the level of support they receive.
Many carers said that extra financial support would be of help, and many mentioned that the respite care provided was not enough or, in many rural locations, simply not available to give carers a break from their duties. A number of respondents commented on the lack of financial assistance available for petrol used when transporting the cared for person.
Almost half of respondents felt that their role as a carer was very stressful with another 46% saying the stress created by their role was manageable. Many reported the stress created by their role as carer was produced by them not spending adequate time with their family or taking holidays, or being unable to take part in sports or social activities, which ultimately led to a feeling of isolation. Other negative impacts mentioned were on personal relationships and the mental health of the carer.
Most Couch members who responded to this poll were female (84%), living in an urban area (four out of five) and aged between 20 and 79 years old. Most (75%) identified as New Zealand European, 7% as Maori, 2% as Samoan, and 13% as “other”, with an additional three people identifying as Indian, one as Chinese, and two as Niuean.
More than two thirds of all respondents provided care for one other person. Respondents who stated that they provided care for more than six people did so in their professional role such as working at a rest home.
One third of respondents reported that they provided care for their mother or father. Almost as many people reported providing care for a son or daughter.
Nearly all respondents stated four or more types of contributions they make to the care of another person. Least common was the administering of medication.
One third of respondents reported that they spend between thirteen and twenty-four hours a day caring. Just over a third reported spending less than three hours a day caring.
Two thirds of all respondents are also in paid employment.
More than half of the respondents to this question said that they had had to make some adjustments in their paid employment to fit with their caring responsibilities.
Q8: If yes, how have you had to adjust your paid employment?
Reduced working hours
The most common adjustment that respondents had had to make as a result of their caring role was to reduce their working hours. Some had to start later and finish earlier and others had to work fewer days of the week to fit in medical or physiotherapist appointments. Some people had to reduce their working hours significantly.
“I was working 60 hours per week, now I work 5 days per year!”
“I start work late or finish early in order to take my aunt to appointments.”
Stop work altogether
One third of respondents said they had to stop working altogether due to their caring responsibilities. Some had given up promising careers and good incomes. A number of people noted that their caring responsibilities were more important than a career or money and that they had made this choice out of free will in order to support a family member. Others felt that they had been forced to stop work as there were no other options, that is, no respite or other type of support available that enabled them to continue working.
“I no longer work. I had difficulty supporting my family whilst I was working. It was stressful and tiring trying to look after the house and children and care for my partner.”
“With many medical appointments and hospitalisations, surgery and ongoing care, I have basically been unable to work. I would need so much time off.”
“I had to quit my job to look after my wife otherwise she had to live in the hospital.”
Flexible work hours, paid/unpaid leave
About one in five responded that they utilised flexible work hours or took leave (paid or unpaid) in order to attend appointments or in case of emergencies.
“I work flexible hours with my employer’s agreement and make up time as required as this allows me to attend appointments, schooling meetings, therapy etc.”
“I’ve arranged flexible working hours so I can leave immediately if she is unwell.”
Permanent change of working situation
A few people had started working different hours (eg night shifts, or longer stretches of work) so that they could fit in their caring responsibilities. Others had changed work or moved to a different office so that they could be closer to home. About one in ten had started working from home or were self-employed at home.
“[I work] early mornings and weekend days when other carers are available, rather than working normal business hours.”
More than two thirds of respondents said that they had another family member who could assist them with their caring responsibilities.
The majority of family members who helped out with caring responsibilities were adults. Four out of five were over 31 years of age.
The person who helped out with caring responsibilities was typically a husband/wife/partner or a son/daughter.
Family members helped out with many things. Respondents typically mentioned more than three types of support they provided. The provision of emotional support was mentioned by most people, followed by the assistance with day-to-day tasks including babysitting and general caretaking.
The majority of respondents had been carers for more than two years.
Almost all respondents said that their caring responsibilities were likely to be ongoing.
Less than one third of respondents had received some training about how to safely undertake common caring tasks.
Q16: If yes, please tell us where you received this information from.
More than half the respondents who had received training about how to safely undertake caring tasks had done so through their own personal training or work, generally from working in the social or health sector. Most of the remaining respondents to this question had received some training from a health professional.
It was fairly evenly divided as to who had and had not received information to help them in their caring role.
Q18: If yes, please tell us where you received this information from
Many people who had received information mentioned more than one provider. The most commonly mentioned provider of information was a health care professional. Second most common were non-government organisations, including Carers New Zealand, Parent 2 Parent, IHC, CCS, and Autism New Zealand.
Books and magazines, especially Carers Magazine, were mentioned. Other information sources included friends and informal networks of other carers, mental health professionals such as counsellors or psychologists, the internet, own personal knowledge, government agencies such as Work and Income or ACC, the education sector and hospice.
The types of information people received varied from moral or emotional support, to practical support such as how to use certain equipment or administer medication.
Almost one third of people who responded to this question reported that they receive financial assistance to help them with their caring responsibilities.
Some people identified more than one source of financial assistance. Overall, Work and Income was the main provider of financial assistance for most respondents.
The second largest provider of financial support was Ministry of Health.
More than one third of people who responded to this question received some other type of support to assist them with their caring responsibilities.
Q22: If yes, please name.
The most common type of support that respondents mentioned was respite or carer support. Assistance with personal care (eg showering) and support with day-to-day tasks in the home such as cooking and cleaning were also common.
Other types of support mentioned were the provision of particular types of equipment or products such as wheelchairs, nappies, or medical equipment (eg syringes), support from a nurse or physician, social support including buddy support, and support from a non-government organisation.
Other less common types of support that respondents had received included out of school services and holiday programmes, extra financial support from trusts, and different types of therapy.
There were more people who were unsatisfied or very unsatisfied with the level of support they had received than there were people who were satisfied with the level of support they had received. Just over one third of respondents were neither satisfied nor unsatisfied.
Q24: Apart from the support you currently receive, is there anything else that would help you in your role as a carer?
Additional help that respondents would like included: increased financial support, help to access information about support, the ability to have some time out, as well as feeling valued and emotionally supported for being a carer.
Compensation for loss of income
Just over one third of respondents mentioned the need for more realistic financial support. Many people were unable to work due to their caring responsibilities and the benefit or allowance they received did not compensate for this. In many cases the reduced income as a carer was combined with increased expenditure as a result of the disability or the illness of the person they were caring for, which made the financial situation even worse. Many felt that the work that they did as carers was just as hard, if not harder, than other paid work but that this was not recognised in monetary terms. Some felt unsupported and unfairly treated because of this. A number of people pointed out that the work they did as carers saved government a great deal of money and therefore should be better recognised and rewarded accordingly. A couple of people also pointed out that it would add more value to their family and to society as a whole if they could receive help to participate in paid work (eg by employing a full-time carer).
“Some form of remuneration irrespective of my husband’s income – I am still unable to work and contribute financially to the household. After 25 years this has severely disadvantaged us financially but our role as carers has undoubtedly saved government funding for full-time residential care.”
“It would have been more cost-effective for the wider community if I could have remained in full-time employment. The cost involved now that I no longer add any of my productive time to income for New Zealand has far outweighed any cost that would have been expended if we had more carer support allocated whilst I was employed.”
“I find it hard to comprehend that because we have a child with special needs we have to forfeit a second income and just struggle all the time. A decent carer allowance would go a long way – even if $200 a week.”
Financial assistance for extras such as petrol
A number of people noted that the financial support from the government only covered the basics and nothing more. Many people specifically mentioned petrol as one of those things that the allowances did not cover. Petrol was a necessity for many carers as they had to take the person they cared for to medical appointments etc. Many wished that they could be compensated for this cost. One person said that she lived so far away from the hospital that every time she had to take her daughter to hospital she had to go without food for a while.
“A bit of financial support particularly now petrol has become so expensive. She lives across the bridge. It takes me 15-20 minutes each way.”
“Work and Income should recognise the effort that goes into caring and not treat us the same as unemployed people. What we get from Work and Income is just enough to pay the bills but nothing extra.”
Review means testing
One group of people commented on the difficult position of earning too much to receive financial help from government but too little to cope with their caring role. A few people noted that due to their inability to receive funding from government they could not afford to buy things that would significantly improve their situation (eg specialised equipment, expensive medicines), which had sometimes impacted negatively on their own health and the person whom they cared for.
“You get the same old answer all the time – “you earn too much” to be approved a van and hoist, leaving myself 95% of the time lifting my child and the wheelchair in and out of the car. I now have a back injury requiring frequent visits to the physio and chiropractor. The government needs to live in a day of a full-time carer!!!” [16].
Financial support for specialised equipment and practical support
Closely related to financial constraints, many carers noted their inability to afford specialised equipment and practical support in the home. Many people could not afford this but were relying on financial support from the government, which was not always granted.
More accessible information about types of support available
Some respondents expressed a need for comprehensive and easily accessible information about what type of support is available for carers such as financial entitlements, carer support, home support, trusts, organisations or informal social support networks. A number of people said that it would be helpful if there was a booklet or internet site where it was possible to find all this information. Some people mentioned that they had not realised that there was help available until years after they had started caring for someone. Others said that they had asked for information at different places, including government organisations and hospitals, but that the information they had received was inconsistent or unhelpful.
“An up-to-date resource book that deals in depth about transition – the choices available and preparation for events, eg at what age do we need to have a Power of Attorney and when is he eligible for Work and Income support?”
“More information on what to do and where to go for help. What services are available to everyone even if you are paying yourself such as home help – even if it’s just someone to be a companion, disability aids, organisations to join, counsellors, things families can do to help and how to approach your loved one with decisions about their future.”
A few respondents had tried accessing support but were either finding it difficult to access support or were unhappy with the quality of information or support they had received. Some were also unhappy about the way they had been treated when asking for support. People said it would be helpful if accessing support involved less paperwork, fewer contacts, and a less cumbersome bureaucracy. Having to keep multiple contacts was tiring and confusing for some people. A few people recommended a “one stop shop” for support or at least some improved consistency in the support being offered so that it would be possible to contact one person or agency about all types of support (eg a case manager).
“When he was discharged from Auckland Hospital it would have been nice to have been told that he could have community care. I could have been able to receive some sort of financial aid, or been employed to be his full-time caregiver by their support team…”.
“Medical staff treating the family with dignity and giving us information on how to care, not just dumping our daughter on us unprepared”.
“One point of contact for all relevant information – eg one person who we can contact approach for funding and medical information as well as residential care, education and work options”.
Increased carer support or respite care
More than a quarter of respondents mentioned that they felt the need for more carer support or respite care. Some people had not been granted carer days by the Ministry of Health and could not afford it on their own while others had been allocated carer days but said the number of days they had been allocated were too few. In addition, a large number of people said that it was increasingly difficult to find suitable carers, which often meant that the allocated carer days could not be used. Some said that the carer support was so erratic and difficult to organise that it was not worth the effort. A number of people also mentioned that it would be helpful if carer support or respite care could be used with more flexibility to fit the needs of individual families.
“More respite care and more flexibility with it. We currently have only 21 days per year.”
“An occasional day off would be great but on the rare occasion that this happens setting it all up just about negates any advantage I might get from time out.”
“To be able to share it and not be the only one 7 days a week.”
Some people noted that they were hoping to find good residential care or retirement living for the person whom they were caring for. A few of these people noted that it was difficult to find residential care in certain areas of the country, especially if you wanted to live close to the person. Other people said that it was difficult to find residential care that was appropriately equipped and suitable to take care of the person.
“…In Greymouth there are no accessible places for her to stay and no trained people to look after her.”
Increased level of moral or emotional support
Many people commented on the social isolation and loneliness that resulted from being a carer. Fifteen percent of respondents mentioned that they wanted some emotional or moral support – either through an agency or through an informal support network. Some of these wanted to meet and talk to other people who had an understanding for their needs and stresses, a friend who could lend a listening ear. Others wanted to feel acknowledged and recognised by people around them, including their families and society at large.
“Just having the support from friends.”
“To have someone when things are getting too much and you feel you need a listening ear…”
Half of all respondents thought that caring was very stressful. Almost as many people thought that caring was manageable. Only five percent thought that caring was not at all stressful.
Q26: If your caring role influences any other part of your life (eg being able to take family holidays), please tell us in what ways.
Although most responses to this question focused on the many challenging aspects of being a carer, many people pointed out that they loved the person they were caring for and did not regret caring for them. The overwhelming majority of responses focused on the social and emotional consequences of being a carer. Over two thirds of all respondents said that they were unable to go on holidays or spend time with family.
Unable to go on holiday
Most respondents who commented on holidays had not had one for six or more years. There were three main reasons why people could not go away on a holiday. First, people could not afford a holiday. Second, the disabled person needed an extensive amount of equipment, which made travelling difficult. Some people also said that it was difficult to find motels that could meet the needs of the disabled person. Third, the nature of the disability sometimes meant that being away from home was very stressful for the individual (particularly those with developmental disorders), consequently making it too stressful for everyone else, which in the end made it better for the family to stay home.
“We have not had a family holiday in 12 years.”
“Have not had any time off for the last 14 years.”
“I have not had a real holiday in 21 years. Going away with our son is very stressful as he is much better in his home environment. It is difficult to get support to be able to take a holiday without him – who is there to care for him? This support for our son will be ongoing for years. Although I do not regret it, it is very tiring.”
“Taking holidays – what is that? Apart from finding places that can accommodate us as a family, how do you transport equipment as well as him….not many motels are equipped for this type of family.”
“It is difficult to take family holidays as my partner is not very mobile. All places we visit must have wheelchair access so walk tracks and outdoor adventures are often not possible. I have close family in other parts of the country that I no longer can visit or it is too inconvenient or I can’t leave my partner alone with our children on their own. We also don’t have the funds or access to air travel that we used to enjoy.”
Reduced free time, including family time
In addition to the inability to go away on holidays, many people were unable to do anything on their own or have any spare time. Many people reported a reduced ability to socialise with friends, engage in sports, or other activities. A few people had given up a hobby, sport or voluntary work as a result of their caring role. The most salient aspect of caring, however, was people’s limited possibilities to spend time with the whole family. Many people were unable to do such things as playing sports after school, going for bush walks in the weekends, or short holidays. This was typically due to the nature of the disability of the person whom they were caring for which often meant that one adult had to stay home or alternatively, the person with the disability had to stay home with an outside carer – either way, leaving the family incomplete. Some also mentioned a lack of money as a barrier to engaging in family activities and social events.
“Travelling by vehicle is the only easy way to travel. However this means only travelling within NZ. It also means having to carry equipment with us to each place, loading and unloading at every stop and needing a vehicle large enough. Stopping to meet person’s needs such as incontinence. Flying gets us there faster however as child has grown and is now adult price and size has become too heavy for transporting and lifting into airplane. Also cost of baggage takes weight of wheelchair etc into account….Alternative is holidays without child who then stays home with a carer. Not much for family holiday with one member left at home.”
“I am on DPB with four sons. It affects everything. We do not have holidays, we often run out of food, we cannot pay for school camps, we cannot engage in extracurricular activities due to budget, I as the parent have no social life…”
Time consuming and isolating
Many people referred to caring as time consuming and ultimately isolating. Some respondents provided comments which suggested that their own mental health was suffering as a consequence of their caring role. Some of these people did not see an end to their caring role, which resulted in feelings of hopelessness, sadness, and anxiety about the future. Many people were stressed, tired, and socially isolated.
Pressure and responsibility
A few people commented on the large amount of pressure and responsibility they felt as carers. This was mainly because they were ultimately responsible for the person but also because they had no one else to turn to. Many people were worrying about the person whom they cared for. Not knowing what would happen in the future to the person they cared for was a great concern for some people. In addition, a couple of people felt undervalued in their role as a carer by other family members or by society at large.
“My main concern is my daughter’s future, if she will have a normal life again. What will she be like when I am not around?”
“Caring is all consuming. It’s isolating, you have no social life, nothing.”
“Caring influences every part of my life – I can’t have a job, it is very difficult for us to go away together, or for me to find support carers to take over my role so I can go away on my own. It influences where I live and who I can live with. I have very little spare time for friends and family and in the current state of affairs will never be able to get married or have children due to the income and benefit restrictions.”
“…for all my hard work I get treated as a bludger by those whose arrogance makes them forget their reliance on unpaid carers.”
“There is no one else to care when I need to take a break.”
Negative influence on other relationships
Another consequence of being a carer that respondents commonly mentioned was the negative influence it had on other relationships. One in ten respondents mentioned that their caring responsibilities had impacted negatively on other family members. This was particularly the case for children who tended to miss out on one-on-one time with the parent because the caring consumed all spare time. Some respondents who had adult children, grandchildren or extended family that lived in other parts of the country were unable to visit them because they could not organise or afford the trip as a result of their caring responsibilities.
“It makes it harder for my son who seems to miss out on that extra time I used to spend on him.”
“It affects all aspects of my life – little to no social life. I have had one 8 day holiday away from home/wife in last 6 years. It has severely affected my job and future prospects and had significant financial effect. Placed huge strain on family and many friends have permanently drifted away.”
“I have kids as well and find it hard to give them my time.”
A few other respondents reported that their caring responsibilities had affected their couple relationship. This was often due to the extra stress that caring involved which often led to an increased level of conflict. Lack of one-on-one time together was also seen as a contributing factor. A few people had even separated as a result.
“It has ended my marriage. Although my husband and I are still good friends he doesn’t want to live with my sister and her illness anymore. We have supported her for the past 26 years and he’s had enough.”
“Biggest difficulty is that my caring role is pulling my husband and I apart.”
Caring did not only impact on family relationships, it also impacted on the overall functioning of the family. A few people noted how their caring responsibilities had changed their family routines, traditions, and every day functioning. Many people commented on the rigid nature of caring for someone with a disability. Strict routines and the need for exhaustive planning of any new events often made little to no room for spontaneity. This aspect of caring impacted on the whole family, not just the individual carer.
“We need to plan in more depth where we will go and what we will do there. Everything we do in daily life needs to be thought through. We cannot do things on a whim.”
“Any change to our daily routine needs to be made aware of months before the change takes place, even if this is just driving to school instead of going on the bus.”
Although most responses focused on specific challenges, many people emphasised that caring was an all-encompassing responsibility that influenced all parts of one’s personal and social life including the lives of other family members. The stressful and compromising nature of caring was a lifetime project for many Couch members. A few people stressed that love is what makes them persevere.
“To be honest my life has changed so much I don’t even know what would be normal now, having said that though I love my son dearly and wouldn’t swap him or put him into care. And I do like to think I am still a happy person.”
About one third of respondents to this question reported that they were aware of the Carers’ Strategy.
Conclusion
Most respondents reported willingness rather than a compulsion to sacrifice their own career to care for the person in need. While many expressed this view, a number also responded that their sacrifice was saving the government a large amount of money and that they were not adequately compensated and valued for their work as carers. Some felt they would be better off financially continuing to work and paying for a carer.
Carers are looking for improvements to the current level of support available to them, in particular increased access to financial support and respite care – and more accessible information about the types of support that are currently available.
Findings indicate that a low number of carers have had formal training of any kind. This suggests that there may be a need for more accessible and widespread training of carers.
Results will be shared with the Ministry of Social Development and other relevant agencies and organisations such as the Carers Alliance.
Thanks again to the Couch members who participated in this poll.
