Living with Parkinson's
|Spouse, Partner and Family Concerns|
Adapting to Parkinson's can be difficult. It means adjusting to a diagnosis, recognizing that life is being changed, maintaining independence, and at the same time acknowledging when seeking help is appropriate. Feeling helpless at times is a normal reaction to these changes and some days will be easier than others.
In the process of adjusting to these changes some people can be troubled by:
- Persistent high levels of anxiety*
- Intrusive thoughts
- Body self-absorption
- Social withdrawal
- Inability to tolerate frustration
* Depression and anxiety are symptoms of PD and may be present before physical symptoms appear.
Psychological support may be helpful in alleviating some of these difficulties. Facing the problems and seeking help require courage and resourcefulness. Having difficulty is not a sign of character weakness or failure.
Adapting to Parkinson's includes making adjustments over time in several areas:
- Lifestyle and work life
- Concerns of the spouse or partner
- Telling children
As the disease progresses, some changes may be necessary. Lifestyle is a personal matter and changing it requires a thoughtful assessment of what is most important about it currently, what can be adjusted, and what has to be completely changed. It is helpful to discuss possible changes with those who might be most affected – your spouse, partner, family.
Help can be obtained in many ways such as:
- Contact PSBC for information
- Check out a Support Group
- Go online to investigate chat rooms
- Talk with friends and family
- Find expert medical care and support
- Gather information from other reliable sources
Sometimes, people with Parkinson's, or anyone with a chronic illness, may be reluctant to seek help. Asking for help may mean recognizing that symptoms are worse or that some new ones have developed. It may mean spending more time with specialists when you are already seeing multiple physicians.
Remember, everyone seeks help in their own time and reluctance at one point in time can change to willingness at another time.
This process can be frustrating for family and friends who want their loved one to get help right away. (This can also be true when a person has not been diagnosed with Parkinson's but has worrisome symptoms.) It is important to remember that everyone has their own ideas of independence and decision-making and everyone needs to seek help in their own time.
When help is offered, how often do you respond with: "No thanks, I'm fine." When you are not fine? Take some time to consider what stops you from accepting help that is offered. Consider some positive responses that would serve two purposes: clearly identifying what would be helpful for you and clarifying what role the helper could play.
"Thank you for offering. I don't need help making my dinner, but it would help tremendously if you could carry my laundry downstairs for me."
"Yes, I'd love some help with grocery shopping, and just so you know, I'm really slow at it and I'm usually in the store for close to an hour. Do you have time for that?"
"No, there isn't anything I can think of right now thanks, but can I call you if something comes up? Sometimes I need a ride to the doctor's office – would that be possible?"
Get information from a reputable source
Start talking about the diagnosis
Create a resource file
Get the most from your doctor
Look for help and support
Plan for the future
Visit the Nidus Personal Planning Resource Centre and Registry and contact us for information on Advance Care Planning.
Maintain an active social life
Learn how to pace yourself
Stay active and exercise regularly
Exercise classes can provide social benefits as well. Check with your doctor prior to starting any new exercise or activity program.
Parkinson's 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's, so they have an opportunity to ask questions or raise concerns. They may also remember more clearly information that the doctor provides.
Some people have a hard time adjusting to the changes that are necessary when their spouse, partner or family member has Parkinson's. Talking about the situation can sometimes be frightening and overwhelming. Some may refuse to engage in any discussions of Parkinson's. It may not be their intent, but avoiding these difficult situations can rob the person with Parkinson's 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:
Role changes due to Parkinson's 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. eg: the "breadwinner" 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's 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, friend 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 well-being?
- Will the person assuming the new role feel overwhelmed, burdened, or anxious?
- What measures can be taken to reduce anxiety and burden?
Parkinson's affects children as well as a partner. Telling them may help them cope with changes that they may be observing but do not understand. An open discussion can be beneficial to all concerned. Young children can understand if the information is presented simply. They will take their emotional cues from you. If the information is presented in a matter-of-fact way, children are less likely to feel overwhelmed or burdened.
Children will benefit from the opportunity to ask questions, voice their fears ("Is it contagious?", "Will you die?") and seek reassurance. It may come as a relief to you to have the opportunity to explain the changes that your children may be observing and establish realistic expectations for the future. Adolescents, particularly, may find it difficult to accept the physical changes that accompany Parkinson's.
Children and adolescents may go through similar stages as their parents (denial, resentment, anger, and acceptance) as they attempt to understand the changes in their life. If children are having difficulty accepting the situation, professional counselling may be considered.
PSBC has several children's books in its library, two of which are listed below, as well as Help Sheets on communicating with children/teens. Please click here to visit our Information and Resources section.
Important questions concerning employment:
- Can I continue to function in my job at the same level? If not, what part of my job has become more difficult and can adjustments be made so that I can address those difficulties at work?
- Can I continue my job with different expectations?
- Is anything at work a safety risk for me or for others?
- Can I change my job to one that is more appropriate to what I am able to do?
- Should I consider going on disability?
- Am I forcing myself to maintain the same schedule as before and getting more and more exhausted?
Fatigue at work is often cited as a major problem. Check whether your medications may be contributing to the problem and whether those medications can be adjusted.
Some ways of conserving energy at work include:
- Having a nap during the lunch-hour.
- Scheduling important business meetings or difficult tasks at a time in the work day when you tend to feel your best.
- Reducing your hours, overtime, travel time.
- Using a computer to take notes if your writing becomes difficult.
- Asking someone else on the team do the presentation if your voice becomes too soft.
Telling Your Employer
Telling your employer that you have Parkinson's is a very personal decision and many factors go into the decision. Common concerns may include:
- Job security
- Fear of negative reactions or discrimination
- Fear of the possible impact on future performance evaluations
- Explanations of changes in your performance
In addition, you may not know how willing your employer would be to make adjustments in job duties or deadlines. However, if your job poses any hazard for you, openness and honesty are crucial for your safety.
Employers may have noticed some change in your performance and talking about it may give them an opportunity to understand the situation and make some helpful changes.
For more information, download our Help Sheets:
Resources for Employment Issues:
- The BC Coalition of People with Disabilities can provide you with information on employment rights relating to disabilities.
- The BC law firm of Blake, Cassels & Graydon generously provides pro-bono services to people with Parkinson's who have experienced employment-related difficulties associated with Parkinson's. To find out more about these services please contact: Jean Blake, CEO | 604.662.3240 | 1.800.668.3330 | Email
Planning for Changes in Ability and Employment
Parkinson's is different for each person and it may never progress to the point where you might have to consider giving up your work. Yet, this may become reality for some. Many of us identify closely with our jobs and careers, and giving them up can be very painful. In addition to the concern about one's financial future, deciding to leave work involves decisions relating to disability status, disability income, and taxation.
Remaining at work, as a person with a disability, may create situations where fair treatment or equal opportunity could become concerns.
When deciding to leave your employment, consider the following:
- If you have disability benefits provided by your employer, review them carefully. Benefits paid to you can be taxable, or not taxable, depending on aspects of the plan.
- When deciding to go on disability benefits, remember that the amount paid is based on your most recent income. Therefore, if you go on part time immediately prior to the time you claim disability benefits, the amount paid to you will be based on the part-time income.
- Speak to your physician about obtaining a Disability Tax Credit Certificate.
- For disability-related information for the last full tax year see: RC4064 Medical and Disability-Related Information 2008
- For complete information and forms relating to income tax and disability issues see the Canada Revenue Agency.