Caring for caregivers: Living with Parkinson’s

Parkinson’s is a family disease; one that takes a team of involved and supportive loved ones to help an individual with Parkinson’s thrive. In most cases however, the bulk of responsibility lies with one main care partner – a spouse, a child, or a friend.

For this individual, life is changed forever when their loved one is diagnosed with Parkinson’s and they must take on many new roles. Theirs is a demanding job involving compromise, encouragement and strength. Their focus is on providing emotional and physical support to their loved one, advocating on their behalf, and learning all that they can about Parkinson’s disease.

Lessons learned
Over and over care partners report similar experiences about the challenges they face in helping their loved ones. Because of the progressive nature of Parkinson’s, a care partner is challenged to know what degree of support their loved one needs at any given time. It is important that a person with Parkinson’s is able to speak for themselves and manage their own life for as long as possible; however, the care partner is a key member of the team. The relationship is sometimes described as one that begins as “partner” and evolves into “care provider”.

Here are a few practical steps for care partners to follow:

Be an active member of the team. Attend medical appointments and be involved in every decision about your loved one’s care. Research shows that people with actively involved care partners tend to do better.

Ask questions until you understand the answer. Parkinson’s is a complex, neurodegenerative disorder and as such, there is a lot to understand. Don’t hesitate to ask questions until you feel comfortable that both you and your loved one understand the answer fully – this includes information about medication (what it’s for, side effects, when to take, things to avoid).

Keep your loved one honest. People tend to leave out important pieces of information when speaking with their doctor/neurologist either due to embarrassment or they simply think it doesn’t matter. It is very important that care partners encourage their loved ones to tell their doctor everything including symptoms, changes in behaviour, other medications or supplements.

Speak up for your loved one. Sometimes people with Parkinson’s simply can not communicate for themselves so care partners must speak up for them.

Know what hospitals and/or care facilities have expertise with Parkinson’s disease. Lack of Parkinson’s education is the primary complaint that Canadians with Parkinson’s and their care partners have about health care professionals coast-to-coast. If you have the opportunity, choose a facility that understands how to best care for someone with Parkinson’s disease.

Get to know the nurses. Whether in a hospital, a care facility or at the movement disorder clinic, get to know the nurses that will be caring for your loved one. If necessary, explain the importance of administering medications on time and act as a Parkinson’s resource for them – your efforts will not only benefit your loved one, but every person with Parkinson’s who needs care in the future.

Take the opportunity to educate. Whether in a hospital, walking down the street or sitting in a restaurant, chances are that some aspect of Parkinson’s will draw the attention of others to your loved one. Make the most of the situation by explaining what is happening and letting others know how they can help.

Become an expert about supports & services. Find out what kind of support is available in your community and what the criteria for qualification are (home care, disability, CPP, etc.).

Befriend another care partner. H aving someone who understands your situation can be invaluable. Over 240 Parkinson support groups operate coast-to-coast –simply contact your Parkinson Society Canada regional office to find the group best suited to you.