Secondary Care Partners
If you are a secondary care partner, your role will never be as demanding as the one played by the primary care partner - who may be a spouse/partner, sibling, adult child, other relative or friend of the person with Parkinson's. However, your role comes with its own unique rewards and challenges. Whether you are providing support from afar or act as back-up when the primary care partner needs time off, there are many ways you can support both the person with PD and the primary care partner.
:Most importantly, remember that your job is to take care of the primary care partner as much as the person living with Parkinson's. The following ideas will need to be adapted to your individual family and financial circumstances.
At Minimum, Call Every Week
Set a designated day and time and make the call faithfully. Inquire about both the person with PD and the care partner. Make sure to include some topics not related to Parkinson's or caregiving to stay connected on multiple levels. Consider setting up Skype, FaceTime, or another video call service so you can see each other on the call. Plan to be there just to listen and avoid any snap judgements or giving unsolicited advice.
Find Out if Financial Help is Needed
Most people will not ask for monetary help no matter how dire the situation. Inquire tactfully but clearly if expenses are a problem, and then offer a plan that can work for everyone. You could provide a regular monthly subsidy, cover a specific expense such as a month's supply of medications (especially important as long as the Medicare gap, or "donut hole," exists) or pay services that relieves the care partner of one or more chores (e.g., housecleaning or yard services).
Send a Care Package Once A Month
Try to tailor the surprise to the individual to make it more special. It might be a bouquet of favorite flowers, a magazine subscription for a personal interest, or a gift card to buy something just for them. Be creative. Never underestimate how much a personally written thank-you note can mean to a care partner whose work goes mostly unrecognized.
Visit the Person with Parkinson's
Budget time and funds for regular visits. Find your own way from the airport and book a hotel room if quarters are cramped. Your trip should not add to the responsibilities and strain of the primary care partner. Make the goal of your visit to provide a listening ear and a helping hand. Spending time with the care partner and the person with Parkinson's will give you a firsthand look at specific challenges and issues to help you think about how to be involved.
Try to schedule at least one of your visits when the person with Parkinson's has an appointment with the neurologist. This will allow you to better understand your loved one's medical status, see how the doctor, patient, and care partner interact, and add your own valuable observations. Also consider the care partner, are regular check-ups and screenings being overlooked because of caregiving responsibilities? Consider coordinating a visit so the care partner can schedule doctor, dentist, and optometrist visits while you stay with the person with Parkinson's.
Provide Respite for the Primary Care Partner
If you cannot fill in personally, locate other options and offer to cover the costs if possible. There may be free or low-cost services available that the primary care partner just hasn't had the energy to locate. Many people who care for someone with Parkinson's say that their role started much earlier in the course of the disease than anyone else realized. If your loved one can travel, invite him or her for a visit. This allows the person with Parkinson's to get all of your attention and enjoy a change a of scenery while the primary care partner enjoys a welcome break in familiar surroundings.
Support the Healthcare Team's and Primary Care Partner's Decisions
Express vocal support to your loved one for the healthcare team's care and safety recommendations, such as using a walker, not driving, accepting additional help with personal care, or wearing a medical identification bracelet. Similarly, when the time comes, affirm the difficult decision to place your loved one in a care facility if that is the desire of the primary care partner. Be respectful of the fact that you are not the person providing day-to-day care. You may not fully recognize how caregiving responsibilities have grown. It is a mistake to let worries about cash flow, sibling rivalry, or dwindling inheritances get in the way of doing what is best for the people whose lives are most affected.
What Not to Do
It might feel like you need permission to help, like the primary care partner cannot or will not delegate responsibilities. This can be frustrating and emotional. Use the strategies above to support from afar, and avoid these common mistakes:
Not understanding the severity of day-to-day symptoms
Many care partners will say that the person with Parkinson's is at his or her best when at a doctor's appointment or having visitors. What you see when you visit may be quite different from the daily reality. Research found that people who care for someone with Parkinson's provided an average of 14 hours of care daily and had greater levels of physical and emotional strain than people caring for someone with Parkinson's disease. Trust the requests of the primary care partner.
Offering too much unsolicited advice.
Friends and relatives who do not provide daily care often have a valuable ability to "see the forest instead of the trees." However, this objective wisdom must be expressed with great care and without criticism for family members who live close by and carry the greater responsibility of caregiving.
Not honoring the historical relationship of care partner and the person with Parkinson's
In most cases, the care partner and the person with Parkinson's will have a long and intimate relationship with one another. One caregiving wife said to her daughter, "My relationship with your father may be dysfunctional, but it's OUR dysfunctional relationship." Trying to make fundamental changes in a relationship of many years can result in frustration and hurt feelings for everyone involved.
Below are some Communication Tips for engaging with your loved ones living with Parkinson's and their primary care partners:
When talking with the care partner or the person with Parkinson's, always listen to what is being said instead of thinking about what you are going to say next.
Be especially careful when sending email or text messages. Without the benefit of eye contact and body language, messages can be misunderstood, and feelings can be hurt.
Do not expect any of your loved one's healthcare team to speak with you unless the person with Parkinson's has signed a release giving his or her permission.
Remember to ask the primary care partner what he or she would find helpful. It may be that paying the bills and balancing the checkbooks is more important than a cleaning service.
Not all problems can be solved. Sometimes the care partner needs a patient, an understanding ear rather than a quick solution.
Parkinson's Foundation. Page76. Secondary Caregiving. Page 78. What Not to Do. Chapter 4. Caring from Afar. Caring and Coping. A Care Partner's Guide to Parkinson's Disease. Parkinson's Foundation. "Booklet."