As care partners to our loved ones with Parkinson's, we tend to fall into two categories: Primary Care Partner and Secondary Care Partner. Primary Care Partners are generally designated to the spouse or person who is living with or near the person with PD to provide daily, hands-on support. Secondary Care Partners are extended family members who help to support the person living with PD and the primary care partner. Each play a critical role.
Sometimes, primary and secondary care partners and family members are not conveniently located to their loved one living with PD. While the navigation of care will be different, it is possible and there are ways you can be a critical member of the care team even if you live far away.
Long-distance Primary Care Partners Many primary long-distance care partners enter this relationship because their loved ones do not want to leave their home or environment. That is understandable. But Parkinson's is a progressive, degenerative illness. At some point, your loved one may need in-home care or relocation to an assisted living or skilled nursing facility if you cannot be there to provide care for them directly.
Unless you can make frequent visits, have friends or other relatives who can visit often and report back to you, or have the finances to hire a geriatric care manager, you may need to move the person with Parkinson's closer to you to assure that he or she receives consistent and adequate care. Since travel can become more difficult as the disease progresses, a move should be discussed sooner rather than later.
If the person lives alone, consider daily well-being calls, or checks by a neighbor. The call should be set for a specific time every day when the person is most likely to be home. If there is a neighbor that is willing to do so, you can alternate calls and visits. You might also want to consider an emergency alert system, especially since falls are so prevalent in advancing Parkinson's.
Educate Yourself Learn all about Parkinson's, including motor and non-motor symptoms, the drugs used to treat the disease and other available forms of treatment. You must be well-versed in the needs and functional status of the person with Parkinson's. You may wish to hire a geriatric care manager to conduct a functional assessment every six months if you cannot visit in person. These assessments determine how well the individual can perform activities of daily living such as bathing and dressing or taking medications properly and preparing meals.
Learn about your loved one's general health and all medications taken, including dosages and possible side effects. Keep a list of your loved one's doctors, specialists, pharmacist, care providers and neighbors along with contact information. Keep all financial and legal documents easily accessible and make sure bills are paid in a timely manner. Parkinson's disease and some of the medications used to treat it can result in compulsive behaviors. Try to find a discrete way to monitor any gambling activities as well as excessive spending or eating.
Keep in Touch
If for whatever reason you cannot move your loved one closer to you or you be closer to them, communicate regularly with the person with Parkinson's and his or her local care providers, whether that means an in-home aide or the staff at a care facility. If your loved one's needs change, you need to know what that will mean for him or her - more skilled in-home care, visits with a different medical specialist, additional prescriptions, new diet regimens, as well as what it will mean for you - more visits, higher costs for care, etc. You can help assess changing needs during each visit.
Work with a Geriatric Care Manager
A geriatric care manager can provide several useful services for a fee. These services include regular wellbeing checks, ongoing communication with family members and arranging financial, legal, and medical services, in-home care providers and transportation. Fees vary depending on what services are needed. You should personally interview the prospective care manager. Ideally, during one of your visits in person, before engaging his or her services.
The Aging Life Care Association offers a Certified Geriatric Care Manager designation to those who have been certified by one of three certifying bodies and who have completed the Association's necessary education and work experience requirements. Make sure to obtain proof of certification before hiring someone.
Be Kind to Yourself
Caregiving from a distance can be emotionally taxing, so make sure you have a support system in place. Below are some communication tips to effectively have conversations with your loved one while trying to manage their care from afar.
Make sure the person with PD has signed the necessary forms with all of the medical personnel providing care.
Include other topics in your conversation with your loved one so that every call is not always about PD.
Remember to show appreciation often to everyone involved in the care of the person with PD - neighbors, volunteers, friends, and paid personnel.
If moving your loved one closer is an eventual goal, start talking about this early and gently. It is always preferable to reach a mutual agreement rather than imposing your will - be extra compassionate if they are unwilling or attached to their homes. Also, be realistic about their support where they currently are.
Try to offer care solutions that provide as much autonomy as possible. Remember that a mentally competent adult has the right to make choices for him or herself if those choices do not put others at risk. The ability to make choices comes with responsibility for the consequences of those choices.
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 if 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 your attention and enjoy a change 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, and understanding ear rather than a quick solution.
Parkinson's Foundation. Page 80. Primary Caregiving from Afar. Caring from Afar. Caring and Coping. A Care Partner's Guide to Parkinson's Disease. "Booklet."
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."