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Spouse Partner and Family Concerns
Parkinson disease can raise many concerns for the spouse, partner, and family. Worry about the future, the risk of disability, job loss, economic loss and increased dependence can induce anxiety and depression.
It is important to talk about common fears or concerns and for a spouse or family member to feel that they understand the disease and its possible progression. It is very useful, if possible, for those affected by the diagnosis to attend the doctor's appointment along with the person with Parkinson disease, so they have an opportunity to ask questions or raise concerns. They may also remember more clearly, information which the doctor offers.
Some people have a hard time adjusting to the changes that are necessary when their spouse, partner or family member has Parkinson disease. Talking about the situation can sometimes be frightening and overwhelming. Some may refuse to engage in any discussions of Parkinson disease. It may not be their intent, but avoiding these difficult situations can rob the person with Parkinson disease of much-needed support.
Every couple handles things in a different way and in their own time. However, avoiding the issues or allowing resentment to build can threaten the relationship and the successful adaptation to the illness. Psychological support in the form of a therapist or family counsellor may be necessary and helpful.
For more information see, our section on Care Givers.
Role Changes
Role changes due to Parkinson disease are common. As the person diagnosed is no longer able to do things they once could, the spouse/partner or family member may need to take on these responsibilities. These role changes are different for every family and couple. They can include handling finances, gardening, cleaning the house, driving, ironing, duties related to children and/or grandparents, or entertaining at home.Role change is complicated by several things:
- We have an idealized view of our role and the role of others.
- Letting go of some roles can create a feeling of deep loss.
- We may be relieved to let go of certain roles but not of others.
- Some roles are new and must be learned.
- We have done some things all our lives and these activities may be difficult to give up. e.g. The "breadwinner" patient may feel a sense of loss of confidence or loss of status within the family, if they no longer are the primary wage-earner.
It is useful for the person with Parkinson disease to do what one would in any good relationship: discuss concerns, address fears, plan before any change is needed, and evaluate the change once it has taken place.
Consider these questions:
- Is it working?
- What roles do you currently have in the family?
- What roles are becoming more difficult for you? What about that role is difficult?
- Can the role be broken down to different tasks?
- Can you continue all the tasks, some of them, or none?
- Can some of the difficult parts be handled by someone else - your partner, child, or paid assistants?
- Is the one assuming the role knowledgeable, ready, and willing to take it on?
- Which roles are critical to the family's wellbeing?
- Will the person assuming the new role feel overwhelmed, burdened, or anxious?
- What measures can be taken to reduce anxiety and burden?