Caregiving is a complex rollercoaster ride of unpredictable emotions and unexpected challenges that often catch the caregivers off guard. Although there is ample knowledge available about caregiving that provides valuable insights, advice, and strategies, the practical experience with all its complexities and nuances is entirely different.
Parkinson’s disease (PD) is a complex neurodegenerative progressive disease that has a broad spectrum of manifestations like tremors that disturb mobility; hallucinations that can affect sleep quality; and confusion and depression that disrupt psychological well-being. These symptoms can significantly restrict the person’s daily routine and social and professional lives. Being a caregiver for someone with Parkinson’s presents a unique set of challenges that can test physical and emotional resilience. Though caregiving is seen more as a duty than a burden, the challenges are real and cannot be overlooked.
Some of the major challenges are:
- Unpredictability of symptoms– The effects of Parkinson’s disease may vary on a day-to-day basis. A task such as daily care or medication management that can easily be managed one day, may require help on another. This creates conflict and confusion not only for the people with the condition but also for the caregivers. Therefore, caregivers can sometimes feel exploited or unappreciated while the ones cared for can feel smothered or neglected depending on the situation.
- Mood swings– The inability to carry out regular abilities affects people with PD and leads to helplessness, frustration, aggression, anger, and apathy. This can cause sudden mood changes. However, mood swings may also be due to cognitive decline where the person gets delusional and starts perceiving non-existent threats.
- Communication issues– PD can make verbal communication very difficult for people interfering with their ability to express themselves clearly. This can get in the way of their basic needs taken care of. Hence, caregivers need to keep reiterating the instructions given to them to prevent confusion and misunderstandings.
- Environment modification– People dealing with the condition need safer and more convenient living spaces. This requires rearranging furniture to de-clutter the rooms and allow smoother and safer maneuvering. Additionally, chairs and couches with firmer cushions are easier to use than low or very soft furniture. These changes involve planning and additional costs requiring the caregiver and the other members of the household to adjust.
- Life on hold-Caregiving is a full-time job with no vacations and with a significant cost to the caregivers in terms of mental health. They may have given up their jobs, and social activities and compromised their leisure time to take care of people with PD. Being housebound can take its toll on the caregiver’s mental health and make them feel isolated from the outside world.
Caregiving for individuals with PD has profound moments of connection and challenging obstacles to overcome. The challenges may be daunting, but caregivers need to know that they aren’t alone in their journey and that they can seek support when needed.
-Content partner Happiest Health
