What does a change in treatment mean for relatives of Parkinson’s patients?
As Parkinson’s disease progresses, many patients find that oral medications no longer control symptoms adequately. Specialists often recommend switching to continuous pump therapy at this stage. This aims to improve both motor and non-motor symptoms, enhancing the quality of life through more stable symptom control. However, a treatment change can be daunting for patients and their families.
Understanding the need for continuous administration
Oral medications have a therapeutic window where they work effectively without causing disruptive side effects. As Parkinson’s progresses, this window narrows, making it harder to manage symptoms with oral therapy alone. Continuous pump therapy offers a solution by providing a consistent delivery of medication, minimizing the fluctuations that can occur with oral medications.
Patients and their families often have many questions and concerns about switching to pump therapy:
“Am I already at this point?”
Understanding the progression of the disease and the limitations of the current therapy is a main subject.
“What will this do?”
Learning about how pump therapy works, and its potential benefits is important.
“Can we cope with this?”
Assessing the practicalities and logistics of managing pump therapy in daily life.
“How will everyday life change?”
Considering the impact on daily routines and family dynamics is necessary.
The role of family in decision-making
The decision for a treatment change and to start a continous pump therapy should ideally be made collectively, involving both the patient and their family. Family members often play a critical role in supporting the patient, not only during the decision-making phase but also in the day-to-day management of the therapy. They can help operate the pump, ensure correct handling, and assist during unforeseen off-phases.
Practical tips for families
- Open Communication: Discuss what you observe about the current therapy and its challenges. Share your ideas, fears, and expectations regarding pump therapy.
- Plan for Support: Consider who can help with the pump’s operation, especially in the initial stages. External support, such as a carer visiting once or twice a day, can provide significant relief and confidence.
- Adjust and Adapt: Understand that it may take time to adjust to the new therapy. Plan for a period of transition where everyone gets used to the new routines.
- Quality of Life: Recognize that pump therapy can lead to better symptom control, allowing for more planned and active participation in daily life. This can improve the quality of life for both the patient and the family.
- Discuss Expectations: Talk openly about your hopes and goals for life with the new therapy. Address any changes in roles and responsibilities within the family.
My tip is: Speak openly about your expectations and wishes as a relative regarding life with the new therapy. As in all relationships, behaviors and roles come into play in everyday life with Parkinson’s. And as strange as it sounds, it can be irritating at first when a different therapy opens up new freedom for everyone involved. Make this an issue! This creates good opportunities to make plans together and coordinate activities that you might also want to undertake independently.
