Like most chronic progressive diseases, Parkinson’s affects not only the person suffering from the disease but those closest to them.
The partners, children, relatives and friends of someone with Parkinson’s Disease have their own unique journey living with a loved one with a progressive illness. They may have their own fears and distress about the situation.
Then there is the practical side. If the person’s symptoms increase they may become less capable of doing things for themselves and require more assistance. This may increase the caring role of the people around them.
Here are some tips for making life easier when caring for a loved one with Parkinson’s Disease.
There are so many unknowns with Parkinson’s Disease. While it is categorised by clinicians as a movement disorder and symptoms may include tremor or slowness of movement in around 30% of cases the tremor is not present. There may also be non-motor symptoms such as depression, memory and sleep problems.
Symptoms usually develop slowly and the rate of progress varies greatly. It is possible to live with Parkinson’s for a very long time.
Each person with the disease is affected differently so a diagnosis is really the beginning of an unknown, uncertain journey. Understanding this is a very important first step.
Build support networks
Even if you think you can, you cannot shoulder this alone. Friends and family may offer their assistance. If you don’t need help right away, make a list of everyone who offers to help so you don’t forget and can draw on them when needed. For example, at some point meal preparation may become tricky – perhaps get friends and family involved in a dinner roster.
If you want to connect with people sharing your experience, there are Parkinson’s Australia support groups in each State. These groups support people living with Parkinson’s from recently diagnosed through to advanced Parkinson’s, along with family and carers. Visit http://www.parkinsons.org.au for more information.
Get some physical assistance
As Parkinson’s progresses, the person with the disease may need additional assistance with personal care tasks like showering and dressing. You may be eligible for some Government funded in-home support.
If not, or if finances allow, you can top this up with help from a private carer. On a site like Careseekers this will cost on average $25-30 dollars an hour.
Your health matters too
When caring for someone with a chronic health problem, like Parkinson’s Disease, it can be very easy for the carer to solely focus on the health of the person they are caring for and forget their own well-being.
Studies show that the physical health of carers is generally worse than the general population.
Your health is important too! Particularly if someone else is leaning heavily on you.
As difficult as it can be to make the time, don’t neglect your own health. At the very least, make sure you eat and sleep well, if you get sick, go to the doctor and look after yourself. Attend your regular doctor or dental check-ups.
And don’t forget your mental health…
The worry and extra load that comes with living with or caring for someone with a chronic health problem means that a carer can experience lack of sleep, stress related issues and mental health issues. These issues need to be addressed, as if not they will further compound the difficulty of the situation.
If leaving the house is hard, learn to do some mediation or breathing first thing in the morning or before you go to bed at night.
Grab your phone and download a meditation app – there are many that offer five to ten minute meditations.
Max Strom’s book “A Life Worth Breathing” offers some great (and quick) breathing techniques which can be very grounding and effective.
Who are you talking to? Make space to catch up with other family members of friends to debrief on how you are feeling. If you can’t see them, do it by phone. It can be so easy to shut down – try and keep lines of communication open. It may make you feel less alone.
You may find you prefer to speak to a counsellor. If the person with Parkinson’s is your partner you may want to see one together, so that you can make sense of the diagnosis and challenges it may present.
Parkinson’s disease is journey filled with unknowns. If someone close to you is living with the illness you are no doubt on this journey yourself. Don’t forget to look after yourself and remember you are not alone.