Dementia is a long-lasting disease. If you are the person providing the main support you may be providing assistance and care over many years. It can be easy to care for others and forget to care for ourselves.
Caring involves giving of ourselves, our time, our physical and emotional energy, but beware, for all of us giving has limits, even if we feel caring is a privilege or duty. Exhaustion, or what is sometimes called “burn out” is the sense of debilitating fatigue, a feeling of frequently being overwhelmed, losing interest in things your previously enjoyed, and feeling hopeless. Symptoms of burn out might also be that you don’t sleep well, lose or gain weight or become ill more often. Burn out can sometimes ebb and flow, with some days you feel a bit better while on other days, you feel quite low. While this is normal to have good days and not-so-good days, it is also a warning you need to pause and look after yourself.
The good news is that burn out can, to a large extent, be prevented by taking regular breaks from supporting or caring. You need to prioritise taking breaks that will ‘recharge your batteries’ and continue this regularly, even if you feel that you are doing OK for now.
Two carers told us of different experiences:
“I thought I could manage everything for Fernando after he was diagnosed with dementia. Our kids are all busy with their families and I didn’t want to bother them. Eventually I think they gave up asking what they could do because I always said, ‘we are ok for now’.
“Several years ago Fernando became severely constipated and hospitalised. I had no idea how exhausted I was. The staff took one look at me and said he had to go to a nursing home. He wasn’t that bad and his confusion got a bit better once the constipation was fixed.
“It was me… I had nothing left. I feel guilty and I also feel that if I had looked after myself better Fernando might still be at home with me.”
“I didn’t see the need for James (our son) to come and take Rex out every Saturday. James does landscaping and handyman jobs, and he would take Rex to the hardware store while he got his supplies. They spent hours there.
“James said he liked spending time with his Dad, but his aim was to make sure I took a break every week. When James found out I was catching up on washing and housework, he sent his partner Alix over to ‘babysit’ me and ensure I did something I liked!
“Sometimes we watched an (uninterrupted) movie together and I enjoyed talking about the movie with her afterwards. Eventually I grew to really value that scheduled time off. Rex now goes to a day centre as well. He thinks it is the Men’s Shed and he’s the director!
“It sounds funny, but I think the practice of learning how to take time out has kept me going over the past five years. Knowing I have that break coming up is a godsend.”
Look after yourself – avoid carer burnout
Don’t set unrealistic expectations of yourself and don’t let other people (including family and friends) expect too much of you. Ask for the support you need or want and practise accepting offers of assistance. It can be hard but in the longer-term you will be glad you did. You can read more about carer burnout here and what to do about it.
It is important that your overall health is managed well for you to care for someone with dementia. Don’t ignore looking after any chronic condition you may have and ensure you have regular check-ups with your doctor(s). Make sure any medication you take is reviewed regularly and you are taking your medications correctly. A healthy lifestyle will help with all chronic diseases.
Looking after your health also involves regular check-ups with the dentist, optometrist, podiatrist, audiologist and other health professionals. Be on the lookout for changes in your health and how you feel, and see your health professional when changes occur.
See your doctor, dentist, optometrist and audiologist
Have your own regular check-ups and follow the advice of your health professional(s). If you are over 75 years make sure you are getting your annual 75+ health assessment.
Ask your GP
If you have dementia, and/or other chronic diseases, ask your GP to help you develop a Chronic Disease Management Plan and then access subsidised visits to allied health services such as physiotherapists and dietitians.
If you are aged 75 years or older, you’re entitled to have an annual, in-depth health assessment with a practice nurse and GP. The health assessment provides a structured way to identify and treat new or existing health issues and consider lifestyle changes that could improve your quality of life.