There are currently over 200,000 people across New Zealand who spend part of their day assisting a family member to remain in their own home, supported by visits from home care and nursing service providers like Access, who help with day-to-day chores, personal cares or nursing services.
This special group of people are often overlooked. They are husbands, wives, siblings and even school-aged children. They are the care givers who never opted in to the role but likely had it thrust upon them by circumstance. When a life-changing event happens that leads to a family member falling seriously ill or becoming permanently or temporarily disabled, life as before still continues for other members of the household. Mortgages and rents must be met, bills need to be paid and even school studies still need to be done, only now with greater pressures.
So who looks after these silent carers, the people who are not receiving the cares, but working away at day jobs and fitting in time with their loved ones to tend to their needs? Well, there are resources and advice out there to help.
For 37 year old Fiona, the prospect of being a carer for her 41 year old husband Gareth never even entered her mind. Both keen trampers with good jobs in management they were living life to the full. That all came crashing down one grey autumn evening in 2012 when, returning home from work on his motorcycle Gareth was involved in a collision. Severing the upper part of his spinal cord left him paralysed from the neck down. Though covered by ACC the couple would never again walk their favourite hills in the Auckland outskirts, nor snorkel the sunny bays of the Coromandel.
‘To put into words how you feel about it is impossible. Truth be it changes on a daily basis. I love my husband dearly and would never leave his side however there are times between the sadness that I feel frustrated, or even angry. Angry at the world that this happened. I find sometimes I struggle to keep myself together so that I can be as strong for Gareth as he needs,‘ says Fiona.
‘If Gareth and I need to go out anywhere or go away for a weekend, we need to ensure I can help him in and out of our adapted vehicle and wheelchair or that I have all his medication, or that places we go will have wheelchair access or toileting facilities to empty his bags. The simplest of trips becomes like an exercise in project management,‘ says Fiona with a sad smile.
Fiona, like many others in her position, went through various hurdles as she overcame the emotional turmoil of having to adjust what seemed the perfect life into one that was as she puts it is ‘Different. So very unfortunately different!‘. In order to get through it emotionally, mentally and physically and be as strong as she could, so that she and Gareth could enjoy the best quality of life, Fiona realised she needed help herself.
‘ACC were very helpful in providing links to support groups and counsellors. After a while I realised I was losing weight from not looking after myself properly. I was so worried about Gareth and if I’m honest I was fighting depression. Fortunately the daily home care support provided by Access has actually been as much a help to me as it has to Gareth. As selfish as it sounds it allows me time to get some respite and know that Gareth’s needs, and dignity, are being looked after.‘
So what help exists for other people in a similar position to Fiona?
‘Well, it’s important to look after yourself,’ says Access National Clinical Manager Lea-Anne Morgan. Lea-Anne has many years experience working with families through her years as a nurse and has seen firsthand the effects that carrying the sense of responsibility has on family members. ‘It is very normal to feel completely overwhelmed and to struggle with the thought of living this way forever in the future. A relationship may feel like it is shifting from being a partner to a carer; this is also a time of very high risk for separation or significant stress if a family carer can no longer cope and has to consider residential care. There is no weakness or shame in considering counselling to assist with the psychological changes that occur as a result of life alteration,‘ she reassures. ‘It can be devastating when someone in a family becomes dependent on others when they were previously independent,’ says Lea-Anne. ‘But there are ways to help ensure you can be as strong and happy as you can be‘. Here’s Lea-Anne’s top things to do if you are a family carer who needs support:
1) Look after yourself. That means respite! If you previously went to a club, or did a hobby then try to continue doing this. See if you can plan with your provider to have care times coincide with your weekly schedule so your loved one is cared for in your absence.
2) Be open and honest. You may feel guilt and feel like you are being selfish but talk to your loved one to make it clear that you need to recover your strength. In most cases they will understand.
3) Don’t shut yourself away from friends. Even if it is difficult to find time invite them around so you can be on hand if you need to be but still keep those important social interactions alive.
4) Enquire about hospital respite for your loved one. Even if this gives you a week to have a ‘staycation’ so you can lie in or potter around the house, that will help you reenergise.
5) Likewise ask your hospital or care provider about any local day programmes. Many areas offer day programmes where people with disabilities can be cared for and involved in their own social and stimulating activities while giving valuable ‘me time’ to a family carer or time to attend work.
6) Eat well. It sounds basic but ensuring you eat regularly and a balanced diet is important. For some family carers their loved one may not be on solids or require a special diet so they may find they are suddenly cooking for one. If you enjoy a particular kind of food make sure you fit this into your weekly food plan for simple pleasures.
7) Try to sleep well. Simple steps such as avoiding caffeine or alcohol or stimulating activities late in the evening can help. Make your room sleep friendly – not too hot and not too cool, with a source of fresh air. Remove clutter and ensure bright lights are blacked out with thick curtains. Use a sleep monitor so you know you’ll hear your loved one in another part of the house.
8) Exercise. If you can fit a regular walk or swim or jog around a time when your carer is present then this will help your body to release helpful endorphins – happy hormones that actually boost energy and lift the spirits.
9) Surround yourself with positive people. Being with people who don’t bring you down with their own worries or dwell on your circumstances will help. It’s important to talk about life. What films are on, what’s happening in sports or the news. Try to keep these small snippets of outside life active.
10) Plan your breaks. When you care for a loved one they have good days and bad days so be prepared to change your plans but make sure you organise your days and weeks ahead and try to stick to a routine as best you can.
‘It can be a great challenge trying to find time to yourself,‘ says Lea-Anne, ‘and it won’t be easy. But it’s acceptable to have time out and not feel bad about it. Draw on the support of others in similar situations and build up a support network. If you look after yourself mentally and physically you’ll be both happier and stronger to provide the care to your loved one. This will ultimately mean you both have a better quality of life.‘
If you find you need more time out and would like support beyond any that may be allocated by your funder and provided already then all of Access’ services are available under private hire. Just get in touch to discuss how we can help both you and your loved one. Call 0800 284 663 or visit www.access.org.nz.