Advice: Give Yourself A Break
If you support an older family member, do you know how New Zealand’s respite system works? Do you know what kinds of time out are available? How do you organise a break?
All District Health Boards offer a temporary respite service to people who support a family member or friend living with them in their home. Your area’s needs assessment and service coordination provider (NASC) will undertake an assessment to determine whether you are eligible for this service, and the number of respite and/or Carer Support ‘days’ per year you may access if your situation meets eligibility criteria.
You’ll find information about assessments and respite in your area, and the contact details for your local assessment service, here. Or if the person you support is under the age of 65, then click here. If you are eligible to receive Carer Support/respite days, you will receive a list of facilities in your area that hold a contract for the particular level of care your family member requires. You’ll find more about Carer Support and respite here.
You need to check with the NASC that you are eligible for days before booking with a facility, as otherwise you will be responsible for respite payments.
You can contact the NASC yourself for an assessment or your GP can refer you. Once you get the list of facilities, ring around and check whether there is a bed available for dates that suit you and your family member.
Then arrange to visit the facility (you could drop in unannounced, but if you want time to talk to the manager, it’s best to make an appointment).
Tell them your story: what do you expect from the facility; how often will you use its respite service; what are your family member’s support needs (leave it to your family member to talk about their needs if they are able to do so). The facility manager can help you plan for the coming year, if you decide to use their service.
Some people choose to plan their time out well in advance. Others choose to take the year as it comes, booking in for a break when they are tired or need support unexpectedly. The problem with this approach is that your preferred facility may not have a spare bed if you need it at short notice.
Don’t be fooled into thinking you should save your respite days ‘just in case’. You get the allocation of days each year, and days cannot be carried over – use it or lose it!
The ideal is to plan regular breaks, long weekends, or long or short breaks throughout the year. You both need a break in the shorter term to be able to manage at home long term. If you know you have a wedding or special event coming up, book well in advance. Sometimes an overnight break is enough. But remember, each break takes a fair bit of planning and time for both yourself and the facility, so one night at a time may be a waste of your precious energy.
Once your family member has settled in for a respite visit, try not to visit every day. If you do this you won’t have a genuine break, and your family member won’t learn how to have a break either. Often they rely on you for everything; they don’t always understand how demanding 24 hour care can be for you.
Phone to check if they are okay (you may both find the first time hardest; it takes time to trust others to provide the special care you have been giving). Or you could arrange to visit on a certain day (say at the halfway mark).
Hopefully your family member will enjoy their respite visits! We all appreciate a change of scenery, the company of others in a similar situation to ourselves, and opportunities to try new things and make new friends.
If your family member has been at home for some time with limited transport or mobility issues, being able to go for a drive and socialise with others is liberating. Often the activities programme offered at facilities also provides a variety of options that aren’t available at home.
Hopefully family carers find these breaks refreshing too. One carer we spoke to said she could stay up as late as she liked and play her organ, and it was wonderful. When her husband was at home, he went to bed at 8pm and expected her to do so too … or at least be very quiet! She didn’t realise until she had some time out the extent to which her husband’s support needs had affected her lifestyle, and enjoyment of some simple pleasures, over a long period of time.
What to Pack
Medications
Preferably packed in blister packs (talk to your chemist about this). Otherwise the facility may require a prescription so they can get this done. It is a good idea to get the doctor or the pharmacist to make a list of medications currently used by your family member, to ensure consistency.
Clothing and personal items
Labelled or named to minimise the risk of loss.
Pack three changes including night wear, underwear, socks, stockings, shoes, slippers, incontinence products/catheterbags (enough for the number of respite days, plus a couple of spares).
Toiletries, hairbrush, toothbrush, fragrance, etc.
A couple of photos, photo album or familiar items from home; a favourite blanket or pillow often helps sleeping and settling, especially for people with dementia or who are anxious.
Glasses, hearing aids, dentures.
All named or labelled if possible.
Some organised families leave a full list of what they have packed. Then it’s easier to pack to go home again, ticking items off the list as you put them into a suitcase.
Contact numbers for emergencies
Who to ring first and an alternative number, especially if you are travelling out of town.
A day in the life of your family member
What time do they get up each day; when do they go to bed? Routines for sleep, what to do if they can’t sleep, how they like their drinks, what they like to eat, favourite daily activities and routines etc.
Some families put together a ‘portfolio’ to enable others to continue care and personal routines in your absence. Give as much information as possible!
If the person you support refuses to go to a respite facility, here are ideas to help them see your point of view.
Explain that sometimes you need a break and encourage them to do it for your sake. You get tired too. If you get too tired or unwell, they will have to go into permanent care.
Get the GP and other support people to reinforce this to your family member. Take them with you when you look at respite facilities. Which one did they like best?
Does someone you know work at one of the facilities, or does someone you know live there? Build up a relationship with the chosen facility (regular short breaks) so the person is not anxious, and realises they will soon be coming back home.
Build up trust and confidence in the facility, and get to know staff. Different facilities have different approaches regarding notice periods and booking ahead for respite care. This can depend on bed availability and staffing. Once you have built up a relationship with a facility and they get to know your family member, often the notice period can be shorter in cases of emergency.
What do Carer Support days cover?
Carer Support days cover the cost of the facility only (bed, room, meals, linen, care staff, Registered Nurse oversight, access to activities).
Other costs remain the responsibility of you or your family member as if they were still in their own home. These might include:
Clothing, toiletries, medical and pharmaceutical costs, dressings, incontinence products, equipment such as oxygen concentrators, mobility aids travel to and from the facility, insurance of property, toll or mobile calls, hairdressing, podiatry, physiotherapy, occupational therapy.
How can I learn more about respite and Carer Support?
Talk to your doctor. Make an appointment with your DHB’s needs assessment and service coordination service (NASC). Ask a local support group or carer network, their field officers, or other carers in your area who use this service.
Subscribe to receive each issue of Family Care to keep up with topics like respite, Carer Support, and dealing with family relationships. To arrange a subscription, phone 0800 777 797 or email centre@carers.net.nz.