The diagnosis of a chronic degenerative condition such as Parkinson’s causes emotional reactions both for the person with the disease and his or her loved ones. Living every day with a person suffering from Parkinson’s becomes a new challenge. You have to be familiar with, and understand the challenges and adapt to a future of uncertainty. This new situation becomes a shared experience. The physical, psychological and social changes, which occur undeniably, require the ability to adjust and adapt frequently.
Information for Families
The importance of "Self Care"
Information for Children
Care Partner Information
A care partner can be a spouse, friend, and/or adult child caring for a person with Parkinson's. This can be a meaningful and rewarding experience. At the same time, it is often a demanding and challenging one. Caregiving is an act of love (or sometimes duty) for someone who is important to you.
You probably clearly remember the day that someone close to you was told, "You have Parkinson's." Parkinson's affects each family member in its own way. It takes ongoing creativity and open communication on the part of each person to live well with this challenging condition. It is a life changing disorder, so what can you do to have some control over how it changes your life?
It is important to remember that the progression of Parkinson's is different for each person who has it. This can add to the ambiguity of dealing with the condition as there is no set pattern of what will happen. However, learning about Parkinson's can give you information that will make you and your family member better equipped to cope with day-to-day situations that may arise.
Learn from reliable sources. The major hazard for care partners is the avalanche of information available from various sources. For example, the number of web sites providing medical information and advice is overwhelming. Unfortunately, many of the suggestions come from unreliable sources and can be hazardous to the patient's health.
Your primary source of information should be a family physician, neurologist or specialist, and Parkinson Society Maritime Region.
Attending support groups for family members and care partners will allow you to discuss common problems and feelings with others in similar circumstances.
People with Parkinson's need to do as much as they can for themselves, but they will also need help and support. As a result of rapidly changing symptoms care partners often say it is a balancing act to know when to help and how much help to give. Open discussion with your family member will go a long way to knowing when he or she will ask for help and what type of help you can give. It will also help you both to know when it is beneficial to ask for help from the larger support network.
Some people let labels like person with Parkinson's or care partner become their complete identity. They stop doing the things they used to do, or spending time with friends who support them. Remember, this new role is only one part of who you are as a complete person.
Remember to nurture all aspects of your self: physical, spiritual, mental and emotional. Practicing self-care is a good way to make sure you have the energy to help your family member, while at the same time giving you a good quality of life. This includes: knowing your limitations, taking time apart, asking for and accepting support.
Emotions are a natural part of the process for both you and your family member. Fear, grief and sadness can be natural in the face of uncertainty and the changes that Parkinson's can bring. Frustration, anger and guilt can also be part of this experience. Accepting these emotions will free you to use them as messengers to yourself for making choices about the best way to act on them. Find someone you can trust to talk to.
As a spouse or adult child of a person with Parkinson's you are a partner in their life and you care: giving and receiving in the relationship. Caregiving can be an incredibly meaningful and rewarding experience, but it can also adversely affect the caregiver's physical, emotional, and social well-being. The most severe effect from providing care cited by caregivers is deterioration in their own health. Forming a partnership including the person with Parkinson's, family members, friends and the health care team is vital in navigating a life with Parkinson's.
External help can include support groups, day programs, homecare and respite, physiotherapy, occupational therapy, massage therapy, counselling, and social workers, to name a few.
Exercise to look after your body helps maintain physical ability and relieve stress. Balancing and managing medications can go a long way to having a fulfilling and productive life. Parkinson's is an unwelcome guest in the family. It is here to stay, but its influence on your day and your relationships can be limited by keeping humour, love, and a positive attitude in the family. Accept that there are moments in time when you may be discouraged in this continuing journey. It will involve moments of doing, coping, surviving and thriving. Remember that you are not travelling alone.
What does it/can it mean to be a care-giver/care-partner to a person with Parkinson's?
- Practice self-care. Nurturing the physical, emotional, social, mental and spiritual parts of you as a whole human being.
- Accept that, although there is no cure yet, management of the Parkinson's symptoms can lead to a full and productive life.
- Look for creative ways to cope, using open communication to handle the challenges of daily living.
- Gather information and work with a health care team to achieve the right balance in treatments
- Recognize signs of depression and seek help as soon as possible
- Exercise as a part of your daily routine. It helps your body and relieves stress.
- Adjust favourite activities or find new activities that you can enjoy together to remain close.
- Be aware that symptoms can vary from minute to minute and plan your day to accommodate this.
- Realize that all your emotions are a very natural reaction to a complex situation. Find a trusted person to talk to.
- Each person is valuable; compromise, encouragement and strength will be needed on the part of each family member.
- Recognize the changes (particularly emotional and behavioural) are the the Parkinson's and not the person.
- Ask for help from your health team, family friends, Parkinson Society Maritime Region and local Parkinson's Support Group. We are here to help you navigate these challenging waters.
Information for Children
Children in the family of a Parkinsonian are affected as part of the total family unit whether they are children or grandchildren of the patient. Parkinson’s affects the whole family. A child’s encounter with the Parkinsonian may be negative or frightening if he or she is not educated regarding the condition. It is the natural tendency of parents to want to protect their children from unpleasant and distressing events of life and as a result they frequently do not discuss the condition at all. The effects of the condition on a loved one, however, are readily observable by the child and failure to discuss them and answer questions can make the child feel shut out and perhaps even more frightened of the unknown ailments afflicting the person with Parkinson's.
Children in the family of a person with PD are affected as part of he total family unit whether they are children or grandchildren of the patient. Parkinson's affects the whole family.