As the carer of a loved one or friend with Parkinson’s Disease, you make a tremendous difference. Being a carer can be exceptionally fulfilling but also highly demanding. Fortunately, there are a number of strategies and support networks available to help you provide the best possible care, and look after yourself too.
Here are some approaches to consider:
Define your role
Chances are, you won’t be the only person involved in your loved one’s care. Speaking to the other support staff and carers to determine your responsibilities can help you to define exactly what’s expected. Writing down your key roles and those of others can help to create a sense or order and make it easier to know who to turn to when new challenges arise.
As the condition of the person you care for changes, your role as a carer will change, too. You may need to learn more about dispensing medications or become more involved in daily activities such as dressing, eating and washing. Being ready for change can make transitions feel easier.
Take time for yourself
Make sure you take time away from your caring duties to focus on your health and have regular ‘you’ time. Life as a carer can be difficult and overwhelming, and you shouldn’t feel guilty for taking a break. If necessary, consider enlisting the help of other family members or bringing others in to help you in providing care.
You may wish to talk to the doctor treating the person you care for if you need assistance with your caring duties or if you are feeling overwhelmed. Speaking privately with your own doctor can be helpful too.
In Australia, you can talk with the GP of the person you care for about setting up a Government funded Aged Care Package or (for younger patients) about a support package through the National Disability Insurance Scheme. There are many private organisations that can also provide assistance if this is affordable.
Often, carers are reluctant to seek out or accept outside help, but usually extremely relieved when they do. Sometimes just a few hours of regular, reliable respite can make a wonderful difference for both you and the person you care for.
Focus on healthy living strategies
Maintaining a healthy lifestyle will keep your mind and body healthy so you can feel prepared for any challenges. Remember to:
- Eat a healthy diet
- Exercise regularly
- Get enough sleep
- Consider reducing your alcohol intake
Learn about Parkinson’s Disease
Knowledge is empowering. Learn more about Parkinson’s Disease so you can anticipate changes in the symptoms or behaviour of the person you care for. As a carer, you may find that knowing what to expect at different stages of the disease can help you to manage new situations as they arise.
Empower your loved one
As the carer, you don’t have to do everything all the time. Talk to the person you care for about how involved they want to be in their care, and encourage them to do what they can. If necessary, you might allow for more time to get these tasks done, so that they can maintain a level of independence for as long as possible.
Find a support group
Speaking to other people in similar circumstances can bring comfort, strength and new ideas. Links to a few Australia based support organisations are listed below:
Parkinson’s Australia https://www.parkinsons.org.au/for-carers
Carers NSW Australia https://www.carersnsw.org.au/how-we-help/support/csg/
- The Michael J. Fox Foundation for Parkinson’s Research https://www.michaeljfox.org/foundation/news-detail.php?dealing-with-parkinson-disease-caregiver-stress-and-burnout&cn_cid=ob-a30U00000004i3f&s_src=Outbrain&s_subsrc=caregiver_stress_outbrain
- Web MD – https://www.webmd.com/parkinsons-disease/guide/parkinsons-caregivers#1
The information provided in this article is of a general nature only and is not treatment advice. Recommendations regarding therapy can only be made on a case by case basis, discussed between a patient and their treating doctor(s).
The information in this article was current at March 2019.