Of Parkinson’s disease affects not only the person who has the condition — the immediate environment is also affected. Because if you have Parkinson’s, it’s not crazy if you need help and support from people around you. Parkinson’s disease causes a shortage of dopamine. This is a substance in the brain that ensures that you can make movements smooth and coordinated. This deficiency causes movement problems, such as trembling hands, stiffness or balance problems. It also has an impact on non-movement symptoms such as your sleep, your mood, the functioning of your stomach and intestines.
People with Parkinson’s can benefit from informal care: help from the immediate environment with practical tasks and care tasks. Think of preparing an appointment with a doctor, finding the right physiotherapy, taking medication on time or help with the household.
Below you can read what informal care can entail, how informal caregivers also take care of themselves and what kind of support you can receive as an informal caregiver yourself.
How caregiving in Parkinson’s works
Not every person with Parkinson’s needs the same kind of help. Parkinson’s is progressive, meaning the symptoms are subtle at first and worsen later. As a caregiver, you provide assistance to someone you have a close relationship with — often family members. You do this unpaid. With caregiving you can think of:
- Offering companionship and a listening ear to the person with Parkinson’s disease, so that he or she remains connected to the outside world.
- Help with care, such as showering and dressing.
- Provide structure.
- Take to doctor appointments and social activities.
- Help with administration, finances and other regulatory matters.
- Helping with the household and chores in and around the house.
- Taking care of food and drink and medication.
Informal care in Parkinson’s: characteristics of overload
While caring for someone with Parkinson’s disease, you can become overburdened as a caregiver: You will notice this as follows:
- You sleep badly and you don’t feel rested.
- You feel limited in other things you want to do.
- You experience too much financial pressure, for example because you had to let go of your paid job.
- Caregiving takes over completely.
Do you notice that you suffer from the above things? Then it’s time to hit the brakes. Read tips for you as a carer below.
Tips for carers
Although informal care is gratefully ‘work’, it is also quite a task. For some carers it is a physical challenge, while others find it mentally tough. Sometimes both are challenging. It differs per person how heavy informal care is experienced. What is good for everyone: maintaining the carrying capacity. How do you do that as a carer?
Some tips to stay afloat:
- Make sure you don’t become a ‘servant’ of the person with Parkinson’s disease.
- Keep seeing friends and doing things that energize you to regularly step out of the role of carer.
- Plan time for yourself and especially enlist help such as a babysitter, a cleaner or having your groceries delivered.
- If you foresee problems, ring the bell and intervene.
Help for you as a carer
Fortunately, there is also support for carers. Consider, for example, a listening ear, practical help with arranging tasks, handles for informal care in addition to your current job and replacement informal care (respite care). Ask for this, because capacity is not unlimited. And although appreciation from the environment and satisfaction help to maintain the carrying capacity, it makes perfect sense if you need more to stay afloat. Do you want to know in which other ways you can receive support as a carer? Or are you curious about the financial arrangements for informal carers? You can read that on the page Parkinson’s disease and caregiving.
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