Being the Carer for those with Parkinson’s
However a PD diagnosis and caring for a loved one with PD is not all bad!!!
Parkinson’s medication is very effective in the early stages of the disease (up to 10 years). The medications alleviate (more aptly masks) the motor symptoms. Metaphorically, the mediations act like oil applied to a stiff, rusty door hinge. The action of the oil allows the door to open with greater ease, thus ‘freed up’. Thus the medications allow the person with Parkinson's to move reasonably freely and maintain relatively ‘normal’ functioning, and quality of life. Unfortunately the effectiveness of medications wane as the disease progresses.
Hence the early stages of the disease is known as the ‘honeymoon period’. Many person's with Parkinson's and their loved ones capitalise on this period. They do some or all of things that they had been putting off, such as working their way through bucket list (e.g. getting in a campervan and travelling around Australia whilst they are still able too, or visit relatives overseas).
Caring for Parkinson's Disease
In fact there is evidence in the literature that shows caring for a loved one with a debilitating or terminal illness (e.g. cancer) can have positive effects. That is many caregivers not only survive the demands of care-giving, but thrive in the care-giving situation, and as a result experience personal and relationship growth.
Many caregivers have reported:
Improved Relationships with the person with Parkinson’s and others (e.g. bringing people closer together)
Enhanced Perspectives, such as a greater appreciation for life and others. Such as feeling grateful for what they have in life or perceiving the caregiving situation as an opportunity to give back to the person with Parkinsons.
Personal Growth such as, becoming stronger , more self-reliant, and improved interpersonal skills (e.g. become more patient, less self-focused, more empathetic, more compassionate, more assertive).
This emphasizes human strength and resilience. How people become stronger in the face of adversity. Many caregivers used the diagnosis as a time for self-reflection, and re-evaluation. To generate goals (e.g. travel whilst still able, spending more time with family, not ‘sweating the small stuff’) and take action, aligned with life values.
However, literature also shows that some carers do not cope and feel at times:
Isolated and alone
Scared that they are dealing with the unknown and at times feel
Resentment for having to give up so much of their lives and careers to support the person with Parkinson’s.
Feel exhausted and that
They have lost a huge part of their life and how things used to be – things just don’t seem normal anymore.
A culmination of these issues and feelings can also lead to burn out and compromise the care of the person with Parkinsons as well as the carer developing their own Mental Health concerns. If you have a loved one who has been diagnosed with a debilitating or terminal illness. You may wish to talk to a psychologist, to assist in positive adjustment to the disease… make an appointment…
Author: Michelle Barratt