Caring for someone with dementia is a demanding job. Throughout the journey, you will probably experience the full gamut of emotions, from joy, pride and compassion, through to frustration, stress, depression and even anger. There’s nothing right or wrong about any of these feelings; they simply come with the territory.
It can also be hard to separate the role of caregiver from the role of wife, husband, daughter or friend. This can lead to the breakdown of what was once a meaningful relationship and, at times, the carer can find it difficult to be concerned about their own welfare or that of the person depending upon them.
Unfortunately, burnout among carers is not uncommon. The overwhelming nature of the role often means the carer’s own needs and desires are left by the wayside as their life is taken over, and mounting stress and helplessness can lead to despondency and depression.
Signs of Burnout
In order to avoid burnout, we need to recognise the warning signs. These can include:
- Withdrawal Avoiding family or friends, and declining social invitations.
- Physical exhaustion No doubt, this is something you will often feel, but in relation to burnout, it refers to tasks you were once capable of that you no longer feel you are.
- Apathy You no longer feel concerned for the person you are caring for, or yourself. You feel there is little point to anything, and are increasingly cynical.
- Irritability Feeling unreasonably angry, and constantly snapping at those around you.
- Altered sleeping habits A sign that the stress is getting too much can be wakeful nights; even though you feel exhausted, you find it difficult to sleep.
- Changes in appetite or weight Mental stress or apathy can lead to a loss of appetite. It can be gradual; you may notice it in your weight before you notice it in your habits.
- Often unwell A person that is experiencing burnout can often feel rundown or constantly sick; too despondent or stressed to properly look after themselves, their immune system suffers.
- Pessimism You feel helpless; there’s no end in sight, and little point to anything you do.
It doesn’t make for light reading. The role of a carer can be alienating and stifling. However, there are some things you can (and should) do to look after your mental and physical well-being.
Staying on top
Look after your own health
As a carer, it’s easy to become consumed by the welfare of the person you’re looking after, but it’s vital that you keep healthy, too. Try to eat well and get some form of exercise in daily. This could be anything from a half-hour jog to a walk around the block. There’s no need to train the house down, but some form of regular physical activity will reduce stress, increase energy and help you sleep.
Speaking of sleep, if you find your nights are disturbed, try and get a nap during the day, perhaps when the person you’re caring for is sleeping too.
Regular check-ups with your GP are also recommended, as they can pick up on things you may not, and it also provides time for the focus to be on you and your health.
Talk about it
If you’re feeling down or the negative thoughts are becoming overwhelming, find somebody to talk to. A close friend, family, or somebody outside your immediate circle such as a counsellor. Talking about guilt or depression or anger can help diminish them, and help you understand that there is nothing wrong about experiencing these emotions. It doesn’t make you a bad person.
Joining a support group can be a great idea. You’ll meet others in the same boat, and simply acknowledging that there are others going through what you are can be comforting. You may also pick up handy coping techniques or management tips, and it’s another chance to get out and socialise. Dementia Australia is a great place to start if you want to look for a support group in your area.
Take a break
Easier said than done, no doubt, but it’s vital you find time for yourself. Family or friends are often willing to help out occasionally and give you a break. Find those who are, and make a list of their contact details, when they’re available and what they’re willing to do. Breaks are not only good for you, but they give the person you’re caring for a chance to socialise with someone else.
A respite facility is also a useful option. BASScare’s Maranoa House is a dementia day centre offering a range of programs for people with mild, moderate or severe dementia, operating six days a week. The time off for the carers is invaluable, and the experience of meeting new people and participating in activities is much appreciated by those being cared for.
Learn to say ‘no’
So you’ve taken on the role of carer; that doesn’t mean you are expected to be capable or willing to do everything. It’s important to set boundaries that stop you from becoming overwhelmed. Learn when to say no, and when to ask for help.
Remember, you’re a team
You and the person you care for are a team; remember that you both need support and small periods of time apart. Take advantage of offers of help from those around you, and the services available to you such as those offered by BASScare.
Maranoa House and Maranoa Carers’ Support Group are a wonderful lifeline to take advantage of, offering care, support and advice. The Support Group meets on the fourth Monday of every month from midday to 2:30pm. Have a look at the full range of services on offer and don’t hesitate to reach out.
Finally, Dementia Australia has fantastic information and resources for carers, so it’s worth paying their site a visit.