When a parent, or loved one, is diagnosed with Parkinson’s disease, it can be extremely stressful for everyone in the family. Parkinson’s is a progressive neurological disease which causes a deficiency in the neurotransmitter dopamine, which is tasked with delivering messages that control movement between the brain and the nervous system.
As the cells that produce dopamine die, symptoms typical of Parkinson’s emerge. These can include muscle rigidity, tremors, impaired balance and slowed movements (bradykinesia).
Caring for a parent with Parkinson’s disease: Where to begin
Perhaps you know very little about the disease or how it will affect your loved one’s life. Start by learning more about Parkinson’s, its symptoms and available treatments. Parkinson Society Canada offers an extensive overview of the disease and its accompanying symptoms in its Canadian Guidelines on Parkinson’s Disease. While this document was created with the medical community in mind, patients diagnosed with Parkinson’s and their families are using it to gain a better understanding of the disease.
One way to support your newly diagnosed love one is by accompanying him or her to the medical appointments which follow the diagnosis. Your presence can be comforting, but it also serves a practical purpose. You’ll be privy to the details of the treatment plan outlined by medical professionals. This will help you to ensure that your loved one stays on track.
During your loved one’s medical appointments you’ll be able to provide feedback regarding the progression of the disease and any side effects of prescribed medications. The patient may not always observe subtle changes, like slowed movements, tremors, a decline in speech or dyskinesia side effects. Your feedback may be a crucial part of tailoring an effective treatment plan for your loved one.
Caring for a parent with Parkinson’s disease: Symptoms
It’s impossible to predict exactly which symptoms will affect your loved one, or how acute those symptoms will become. Your parent may find it difficult to adjust to changes brought on by Parkinson’s. Tremors, stiffness and slowed movement can make tasks that were once simple, like getting dressed or cooking a meal, quite challenging. Encourage your loved one to be patient with him or herself and to adjust expectations accordingly. Then realize that you, too, will need to modify your expectations. For instance, you may need to allot more time for your parent to get ready for doctor appointments or family events.
It can be difficult to watch one’s parent struggle with a basic task, like buttoning clothing. Our first inclination is to provide assistance. At times, your parent will need your help. However, it’s important to discern when assistance is required and when the care recipient would rather tackle a job unaided. For the patient, being able to complete a task without assistance, regardless of how long it takes, is often a matter of independence and dignity.
As Parkinson’s progresses, additional symptoms arise. These may include:
- Sleep disruption
- Difficulty swallowing, chewing and speaking
- Rashes or other skin problems
- Constipation and urinary problems
- Sexual difficulties
Each new wave of symptoms creates new challenges which make it necessary to adapt the patient’s environment and daily routines. For instance, it may become necessary to move furniture and secure rugs throughout the living space or install bathtub grab bars in order to minimize the likelihood of slipping or falling.
Caring for a parent with Parkinson’s disease: Personal care
Your parent may readily welcome your assistance in some areas, but may prefer to have a personal care provider assist with bathing, change bedding or handle other housekeeping duties. As the disease progresses, it can be exceedingly difficult, as a family caregiver, to provide all of the support your parent needs. It may become necessary to engage an in-home caregiving professional to provide the day-to-day, practical support which will enable your loved one to stay at home safely.
At Retire-at-Home, we follow the “person-centred approach to care and treatment” recommended in the Canadian Guidelines on Parkinson’s Disease. Our screened, experienced nursing staff and personal support workers are knowledgeable, patient and compassionate, lending to an optimum experience for our clients. Our case managers can help bridge the gap in care and provide your family with the resources needed to make important decisions about your loved one’s care.
Caring for a parent with Parkinson’s disease can be challenging, particularly as the disease progresses. However, becoming knowledgeable about the disease, communicating clearly with your loved one and enlisting the help of professional caregivers, when needed, will greatly improve the quality of life of both the patient and family caregiver.
For video, audio and text documents that explain common Parkinson’s symptoms and provide practical tips for managing them, visit the Michael J. Fox Foundation for Parkinson’s Research website and explore the links under “Understanding Parkinson’s”.