Most people are introduced to the health care and social care systems in a time of crisis and are faced with having to make decisions quickly with limited knowledge of how the system works or even know who to call.
Caregivers are often left to search for information on their own and it can be challenging to know where to start. Where should I look? Who should I call? What kinds of resources even exist? They might find themselves looking for the right medical professional, or dealing with financial institution. They might be looking for in-home care services or maybe they need information about their legal rights and responsibilities.
This Caregiver webinar will teach caregivers how to take charge and identify key issues in order to find and get the help they need as well as implement a self advocacy plan so that they can continue to provide the best care they can to their family member or friend.
Robert TerSteege, CIRS
Navigator for the MS Knowledge Network
Caregiving can be overwhelming at times. Factors like planning for appointments and tracking your communication with various professionals can be crucial, to ensure that you do not become ‘lost in The System’. We have several tools for you, as well as tips on effectively identifying issues, and self-advocating.
- Communication journal (PDF)
- How to determine the key issue (PDF)
- Honey Do list (PDF)
- No miss day calendar at a glance (PDF)
Caregivers play a major role taking care of family members with neurological health conditions like Alzheimer’s disease, Parkinson’s and Multiple Sclerosis. Many caregivers would not have it any other way. Yet, caregivers need help to see to their own needs. We know that stress can be a serious issue and can lead to poorer health for caregivers. This Caregiver webinar will explore:
- The physical and emotional changes that can come with each stage of caregiving;
- The typical range of feelings (the ups and the downs) as a natural part of caregiving;
- Ways to identify stress and other mental health concerns;
- Tips to staying healthy and well
Bonnie Schroeder, MSW, RSW
We know many caregivers feel stress; as many as 35% of caregivers who care for someone with a neurological condition, report feeling stress. Caregivers feel pressure and anxiety when part of their life is not in balance.
Parkinson Canada has an online resource available that caregivers can complete to identify areas of stress in your life and where you might want to take action to stay healthy and well. Access the Am I in Balance resource.
You probably clearly remember the day when someone close to you was told “You have Parkinson’s disease”. Now you are considering how you can develop your role as an effective caregiver/ carepartner to this person with Parkinson’s (PWP).
No one is really prepared to be a caregiver. You may feel overwhelmed with your new responsibilities. You know there is no cure for Parkinson’s and the PWP will need even more help as the disease progresses. You know your lives will never be the same.
How can I help? Where do I start?
The first step is to discuss and agree with the PWP on the role you will play.
The PWP will make the decisions but you want to be there – to offer physical and emotional support when it’s needed. You need to talk about how your involvement can change as Parkinson’s evolves.
Then form a partnership with the PWP, health care team, family members and friends. Each has a contribution to make and a role to play in meeting the challenges of Parkinson’s. The more information you and the PWP have, the better equipped you will be to cope with day-to-day obstacles.
Listen to the doctor’s advice. Review what he/she recommends. Talk about available treatment options. Learn how the symptoms of Parkinson’s can be managed.
You will hear about medical breakthroughs in the media. These can sometimes create unrealistic expectations about ‘miracle cures’ for Parkinson’s. Get up-to-date, reliable information by contacting your doctor, calling us or visiting this website.
Medication management is the most important part of controlling Parkinson symptoms. The doctor will provide guidelines on when medication should be taken. You can help by keeping a record of medication effectiveness as well as side effects including nausea, confusion, hallucinations or abnormal movements. Does the PWP feel better when the medication is taken before or with a meal or on an empty stomach? Does a new drug cause undue anxiety? Share any observations with the doctor.
A PWP will have ‘good’ and ‘bad’ days. So will you and that’s okay. Listen, be patient and understanding. Look for signs of depression which could include anger, change in personal habits, withdrawal. Seek support if needed, and encourage socialization.
Exercise, especially walking, is essential therapy for someone with Parkinson’s. It’s good for you, too. Make exercise a part of the daily routine. You might look into a stretching program or a tai chi class ideal exercises for people with mobility issues.
As Parkinson’s progresses, one of the toughest hurdles you both will face will be coping with emotions. Talk about ways you can help relieve stress, provide physical assistance and meet special needs.
You may need to adjust or find new activities to enjoy together to remain close.
The PWP may experience problems with medication and potential side effects, constipation, sleep problems, speech and communications difficulties and mobility issues. We can help – ask us for information on these topics.
How can I take care of myself?
- Contact us to determine what kind of support groups are available in your area for you and the PWP. These are a good opportunity to listen, learn and share experiences.
- Know your limitations. Parkinson’s is progressive so it may be increasingly difficult to care for a PWP by yourself. Look into homecare, day programs or help from your family members.
- Every caregiver needs ‘time out’ on a regular basis. Take a break and see friends. Ask for and accept support. Make a list of tasks others can do. People want to help – include them in the caregiving plans.
- Find someone you trust when you’re feeling low or need to talk about some of your feelings. Get help when you are feeling stressed. And, remember, you are not alone!
Parkinson Canada Brochure: How you can be a supportive caregiver
Communicating Effectively with a person with Parkinson’s
Communication Cognitive Changes
Responding to Aggressive Behaviour
10 Tips for Care partners
Tips & Tools for Caregivers
What does it mean to be a caregiver/carepartner?
- A caregiver can be a partner, spouse, friend and/or adult child caring for a person with Parkinson’s (PWP)
- Caregiving can be a demanding job involving compromise, encouragement and strength
- It means realizing the PWP is in control and needs and wants your support to live as independently as possible
- It means accepting that although there is no cure yet for Parkinson’s, management of its symptoms can lead to a full, productive life
- It means looking for ways to help a PWP cope with the daily challenges of living It involves gathering information and working with a health care team to ensure the right treatment balance is achieved
- It requires recognizing the signs of depression in a PWP and seeking help as soon as possible
- It leads to a variety of emotions especially frustration and possibly guilt … a very normal reaction to a complex situation
- It means asking for help from your doctor, family, friends and local Parkinson’s organization