Tales from the front line of seeking respite care for family carers and health professionals alike – a carer’s perspective

As the festive season is in full swing and we start to wind down from the year that was, to refresh and recharge for 2016, take a thought for family carers that often do not have this time to take the necessary relief they require for themselves. Well, at least not without significant planning and challenges along the way. Whilst there are a number of different respite options available to family carers providing them with the opportunity to have an extended break from their day-to-day caring role, for some carers putting trust in others can be a difficult process.

Recently I had the chance to meet with a family carer, *Amanda, at Carers Victoria’s Mingle 2015 event. She shared with me the array of emotions that came with the planning for respite care; from anxiety, guilt, fear of the unknown and how their loved one will react moving into aged care or just at the thought of it; and the stress of not knowing if the facility will care for her loved one the way she can and does. This perception or ‘fear’ warranted or otherwise, often makes the thought of going on holiday more stressful than the exercise of seeking respite may be worth. However, as Amanda’s shares, by working through the options and building trust with a service provider, which takes time and requires a series of vetting steps along the way to find the right one for you and your loved one, it is well worth persevering.

Amanda, like most carers have many stories to tell, having accessed and been exposed to multiple and various aged & disability care services in the process of caring for, and advocating for, their loved ones. I was very interested to learn more about Amanda’s experience of where things perhaps didn’t go to plan and how she managed to address these not so easy scenarios. Some of the struggles she had been through in the attempt to find respite care for her mother who has a diagnosis of dementia are truly daunting but sadly, not just isolated to Amanda’s experience.

Some of the challenges Amanda faced when booking in advance for respite care included the situation where some facilities she approached couldn’t guarantee they could keep even a short term (ie. 2-3 weeks) respite booking reserved for her whilst she organised travel logistics; and, also warned that at any time, if they received a referral for a new permanent resident the facility will give preference to that prospect over Amanda’s loved one. Amanda shared in her words, “So currently with these specific facilities, if you want to take a holiday, you have to first find an aged care short term respite option, commit to the booking, and then book your holiday in that window – but even then it can be cancelled. I don’t think your travel insurance covers carers having to cancel due to “change of mind” by and aged care facility?!”.

Whilst this is not common practice and there are a number of facilities that will allow you to book in advance, it does limit your options if some facilities seek to enforce this policy regardless of the ethics. Really, if you are facing such a scenario which is not widespread, all you can do is book flexible fares and make changeable travel arrangements but this of course comes at a cost premium. There must be other ways? Surely there must be a better system for the family carer to plan?

Many of the themes that arose throughout our conversation was how Amanda often felt as though she wasn’t adequately listened to, feeling as though “carers often get put aside” whilst attention is focused only upon the resident. She acknowledged the focus will always be on the resident and should be but there is a critical perspective and role the carer plays as well. The role of a carer is hard enough without having to battle through additional obstacles to get the best outcome for the person you are caring for and fighting simply to be heard. Support networks and systems around a person in care are as important to the elderly person’s quality of care or resident’s situation as the resident’s state of health in its own right. Family carers and others around the loved one in care are the first line of defence and support and therefore like any healthy system must be assessed, supported and rested from time to time as much as the loved one is themselves. Only this way can the ecosystem of support sustain and thrive.

It’s important to talk about real people’s experiences where there are potentially avoidable incidents or gaps so that service providers and health professionals can learn from others and apply reflective practice, considering their own interactions with families and patients. If we don’t talk about the gaps in a system openly then how will we as clinicians or organisations make the necessary improvements to better support our ageing community.

Health professionals or health services in most cases don’t set out to exclude family carers but sadly it is something that is frequently reported by carers. As a nurse myself, I find family carers one of the most valuable resources in assessing and supporting a person in care, in particular when assessing a patient with a known cognitive impairment whether it be at home, in a hospital or an aged care facility. In many instances it is the family carer or nursing staff that first notice symptoms of concern in a loved one and alert a doctor or other professional so something can be done about it. They are a critical piece in the monitoring and feedback loop for the care process, an essential part of the care ecosystem. By including carers and involving them in the discussions around care we will ensure better outcomes for the individual in care in the long run.

As most people will appreciate caring is difficult and stressful in any form, let alone having to navigate the system and advocate on behalf of your loved one for services and ensure they are provided with quality care when you are not around. The stress and anxiety for Amanda that previously has been associated with informing her mother she needed some time in respite care was simply not worth the anguish to Amanda and her mother alike. Amanda shared a lesson she learned, that the anticipation of the event became an unnecessary stress and sometimes, it is simply simpler for the cognitively impaired to be transferred in and out of respite as a matter of course without the anticipation and fear of unknown by informing them well in advance even if you think you are ‘being courteous’ or ‘doing the right thing’. Over the years, and by trying different approaches, Amanda has learnt what works best for her mother. It is simply to not mention planned respite until she is in the facility, this was she avoids making her mother too distressed as her mother is comfortable with the respite care facilities themselves.

There is also a significant amount of trust that needs to be put in the hands of health professionals but this can be challenging as Amanda also shared with us. She noted an example from her first introduction to a respite service not going the way she would have hoped. In that instance, the management of her mother’s medications was poorly handled. The nurse had signed off on the administering of her mother’s medication in the paperwork, however on inspection, the Webster pack (where the medication is kept) was still sealed from the evening before and therefore it was clear that her mother had not received her prescribed antipsychotic medication as required and represented. Whilst Amanda acknowledges we are ‘only human’ and mistakes will be made from time to time, it was probably the follow up and acknowledgement that was the more disconcerting for her and the errors in the records. Clearly the event itself was concerning enough but when Amanda attempted to follow-up with the manager on duty the next day, she learnt that the manager had taken emergency sick leave which happens form time to time, making it difficult to follow up her concerns with anyone else sufficiently qualified to address the matter properly. This is just one example of what stresses can arise around the decision of putting a loved one into respite care and an unexpected scenario you can face. Systems are not perfect but looking for those providers that focus on attention to detail and quality of care can alleviate these risks and stresses.

What is important to be aware of here, is that health professionals or care providers not acknowledging family’s concerns immediately and satisfactorily once an incident is raised triggers a fight or flight response for many families. This often results also in putting carers on guard or caution, and the family carer then beginning to grow concerns of what other errors will arise or need to be addressed breeding further mistrust as the carer feels compelled to defend their loved one. For every unresolved incident ‘trust’ is often damaged which takes time to repair if indeed it can be depending on the level of the breech. One thing that Amanda was surprised about was that at each admission to respite she sought for mother, no one had ever asked for her opinion or experience in the service, asked her about how she found her mum’s stay or showed any concern for her mum’s experience of the stay for that matter. She thought she had valuable information to share and provided feedback to the provider on a variety of items but not one of the services asked her or seemed interested. She knows there were forms you could fill in procedurally but thought it would have been sensible for all stakeholders, if not courteous, to have been able to share with the provider the positives but also areas that they could improve their service. The lack of interest in the quality of service experienced is a gap in our system too common across many areas today albeit slowly changing.

It is one thing to consider the lack of interest and compassion for Amanda and Amanda’s situation but it is also important to think about the systemic loss of information in the health care loop for the resident in general, and massive cultural challenge required to capture such insights at the coalface as and when the insights are observed to ensure necessary and valuable information is captured where it is relevant and passed into the hands of those who need it when assessing the residents situation in general to make informed decisions for an individual or for the system as a whole.

Even though this incident occurred, Amanda was determined to trial another facility for respite care that she was familiar with as she knew that for her to continue in her caring role and prolong semi-independent living for her mother as long as possible, a successful and regular respite care option had to be part of the plan. The challenging process of finding a facility that had any vacancies was one thing, but finding one that was trusted and she could be comfortable to hand responsibility of her mother’s health too, even for a short time, took extra time and vetting to find the right one. Frustratingly, Amanda recalls phoning a number of facilities in the area just to get basic and current information, only to have most of them not return her calls. Again something we often hear from people searching for respite care. To compound the challenge, there was limited ability to get access to genuine independent experiences of others to build trust in a facilities actual service, and not just be left to relying on reviewing ‘paid for’ marketing pieces or self-published testimonials that don’t show a true picture of the quality and track record of the care provider.

After asking around from others in the Day Care Centre her mother attends, Amanda eventually found a small cottage style facility for her mother after a number of weeks of searching. In the end it was referred to her by a friend at the Dementia Care Day Centre who she trusted and she knew was independent in her advice. This gave her the confidence to seek an opening and enrol her mother for a period of respite care.

Whilst respite care may seem daunting at first it’s important for carers to persevere as it’s an essential component to continue in the ‘caring role’ long term. It is just not sustainable to expect to be a provider of good quality care continuously and without rest or a break whether you’re a family carer or a health professional with no ties to a loved one in care. If you are family carer you must invest in yourself too and navigate the respite process if you haven’t already. New services are becoming available all the time and the process will get easier to navigate. Rest assured though that many people face this challenge everyday even now and years gone by and successfully deliver their loved one into care and out again without incident. You do need to do the homework but good operators are around.

Something to consider for nurses and personal carers

Aged Care Nurses or personal carers take the time to get to know the family carer, listen to their concerns and remember they are only concerned about their loved one. If they are raising concerns put yourself in their shoes, would this be something you would want for your mum or your dad? Maybe they have seen something in their first line of defence position others haven’t? They are an essential and valuable part of the care ecosystem for the resident. Let’s not forget them, furthermore, let’s make sure we listen to them and support them too as well as the resident in or seeking care.

*Names have been changed for privacy reasons.

Do you have a story to share about experiences arranging respite care, suggestions for improvement with our community?

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