Advice for Loved Ones and Caregivers
Parkinson's disease brings challenges for loved ones and caregivers as well as for Parkinson's patients. Our caregiver-edited guide offers suggestions and advice for those dealing with a loved one with Parkinson's disease.
Whether you are living with and supporting a Parkinson's patient, a close family member who visits often, or a friend who calls and sees a Parkinson's patient from time to time, you are likely contending with at least some of the issues associated with "caregivers." For the purposes of this section, we are defining caregiver broadly as any non-healthcare professional whose actions affect the well-being of a Parkinson's patient, or who is involved with his or her care decisions.
Lonnie Ali, a member of The Michael J. Fox Foundation's Founders' Council, is widely known and admired for her advocacy on behalf of caregivers. She offered advice for fellow caregivers, to which our caregiver editors have added their own thoughts. Lonnie's tips were originally published in Reader's Digest.
Lonnie Aliís Additional Tips to Ensure the Best Care for Your Parkinsonís Patient
Stay organized. This is crucial in order to avoid becoming overwhelmed. Keep a dedicated calendar for your loved one that can easily be taken along on doctor visits. On the calendar, be sure to note doctor and therapy appointments, start and stop dates of medicines, and noted side effects. Also keep a list of all doctors' phone numbers and addresses in case of an emergency.
Familiarize yourself with the provisions of your loved one's medical insurance coverage. Determine what services are covered and not covered. Find out the long-term needs of your loved one and make sure his or her current medical plan will meet those needs.
Know your rights, as well as those of your loved one. This will be helpful as your caregiving duties move from care partner to caregiver and short-term to long-term. Whether it's a disability, family leave, or elder rights, become knowledgeable so you are empowered to speak up for yourself and your loved one.
NOTE: The Foundation strongly recommends that care and treatment decisions related to Parkinsonís disease and other medical conditions be made only in consultation with a patientís physician or other qualified medical professionals. The presence of links in this section and elsewhere on the Web site does not signify an endorsement by The Michael J. Fox Foundation for Parkinsonís Research, and the Foundation is not responsible for any information found on other Web sites.
Parkinsonís disease and your marriage
Lonnie Ali says: Focus on quality of life. Caregiving can be very trying at times, so be sure to keep a positive attitude and sense of humor. Plan some activities for both of you to participate in together. This allows for you to connect with each other outside of the caregiving role.
"When I first heard about my diagnosis, I was so angry. And Tracy just looked at me, and said simply, ĎIn sickness and in health.'" - Michael J. Fox
MJFF's caregiver editors add:
- It's not uncommon for spouses of Parkinson's patients to have thoughts of leaving their marriage after Parkinson's disease enters the picture. But merely experiencing thoughts of leaving, no matter how unlikely they are, can cause a great deal of guilt and distress. If you are generally happy in your relationship, it's best to accept these thoughts as a normal part of post-Parkinson's disease life and move forward without giving them too much credence or concern. However, if the relationship is troubled by problems beyond those that can reasonably be attributed to living with Parkinson's disease, the best course (as it was before) is to share them openly and honestly. You may consider seeing a counselor or therapist together and/or individually. Effective communication is vital for the long-term health of your marriage, whether Parkinson's disease is present or not.
- Some spouses struggle with changes in the Parkinson's patient's appearance, which may become messier over time. Michael J. Fox himself has said that vanity is the first thing Parkinson's patients have to learn to let go of. The rigidity, slowness and stiffness of Parkinson's disease make it more difficult to perform simple tasks. This is one reason that many patients with Parkinson's develop a habit of not picking things up after themselves and have greater difficulty keeping things (or themselves) neat and organized. Patients with Parkinson's are easily fatigued, and movement difficulties can make a mildly unpleasant task seem impossibly daunting. Also, cognitive changes may make it difficult for some patients with Parkinson's to initiate and follow through on everyday tasks. It is important to consider the strengths and weaknesses of the Parkinson's patient and the caregiver when dividing up responsibilities and activities on a day-to-day basis.
Parkinsonís disease and your friendships
Lonnie Ali says: Build a supportive group of friends, family, medical personnel and spiritual advisors. Most communities have organized Parkinson's disease support groups that will enable you to connect with other caregivers. If your time is limited, take advantage of online communities that will allow you to connect with others who share similar caregiving issues and challenges.
MJFF's caregiver editors add:
- As much as you legitimately need a shoulder to cry on, your close friends probably don't want Parkinson's disease to be the entire focus of their relationship with you. This is another significant benefit of joining a Parkinson's disease support group, where members rarely tire of discussing the disease.
- Support groups may include loved ones only, Parkinson's patients and loved ones, or have separate breakout sessions for caregivers. Each offers the opportunity to share experiences and information, and benefit from a sympathetic ear. Choosing the type of support group that's right for you is a matter of personal preference - you may want to try them all out before deciding. Also, keep in mind that each group has a different personality. If you crave the support of such a group, but had a bad initial experience, try another. If there are no groups in your area that work for you, consider starting your own.
- Watch out for depression in the Parkinson's patient. Depression is a symptom of Parkinson's disease - not just a "natural" reaction to diagnosis. It can cause a Parkinson's patient to withdraw and seem absent or out of character. Depression is treatable. If the Parkinson's patient is exhibiting signs of depression for a few weeks or longer, talk to them about seeking treatment.
- Most Parkinson's patients experience fatigue, which can make them less interested in socializing or engaging with friends and family. It is often the case, however, that once the Parkinson's patient gets out of the house, he or she will shed that listless manner and enjoy interacting with others. So if you encourage the Parkinson's patient to take that first step, he or she may quickly re-engage.
- Medications can also cause a range of side effects, from a sedated appearance to irritability. If a sudden shift in mood or behavior follows a change in medications, consult a qualified physician about the possibility of side effects.
Taking care of your own emotional life
Lonnie Ali says: Caring for yourself is as important, if not more so, as caring for your loved one. Eat healthfully, get plenty of rest, and make it a point to exercise. But most importantly, don't stop living! Although your life has changed, you still have one. Preserving as much of your life as it was before the diagnosis will enhance the overall quality of life for you and your loved one.
Ask for help. No one is able to take care of a person with a chronic illness 24 hours a day, 7 days a week. Put together a list of friends and family members whom you trust and can call upon to relieve you for a few hours or in case of an emergency. If the financial means are available, seek outside professional help for in-home assistance.
MJFF's caregiver editors add:
- Many Parkinson's patients choose not to reveal their diagnosis right away. This can be a source of stress for loved ones who are obliged to honor that decision, but don't feel comfortable being evasive or in some cases having to lie. There is no simple answer to the question of how best to support the Parkinson's patient and still feel comfortable with oneself. Factors to be weighed carefully include how deeply each person feels about the issue, the seriousness of any social concerns for both of you, and any possible career and economic fallout (now or in the future). Try to work out an agreement that both of you can live with. The agreement should take into account your motivations and the consequences that are likely to result from a decision to continue to conceal or reveal the diagnosis (including when, how and to whom).
- Don't forget your life outside of Parkinson's disease. Schedule your own social activities and time for yourself. Go out with friends, enjoy a physical activity independently, or take classes that interest you. Don't sacrifice all of your own interests to care for your Parkinson's patient. For Parkinson's patients who require constant care, check out local programs that will take care of them on a temporary basis (sometimes called "respite care"). This will allow you the time to seek the support that you need.
- If you are receiving strongly negative reactions to offers of assistance, it's wise to balance your empathy for the Parkinson's patient's difficulties with respect for your right to be treated civilly. Explain simply, and without defensiveness, that your offers of help are not meant to embarrass or diminish him or her, but come from your desire to make life easier. In the long term, ask the Parkinson's patient for some guidance as to when to offer help and when not to. This can help reduce the frequency of misunderstandings.
Diagnosis and the first days with Parkinsonís disease
Lonnie Ali says: Educate yourself and your family about all aspects of Parkinson's disease. Research causes, symptoms, long-term prognosis, available treatment options and possible new treatments that become available. Arming yourself with knowledge will enable you to anticipate and prepare for changes in behavior as well as physical, mental and emotional needs.
Research and find the best nearby physician/specialist. If at all possible, choose a movement disorders specialist, not a general practitioner or neurologist. Movement disorders specialists have specific knowledge and are aware of the latest treatment protocols available that will affect the long-term well-being of the patient.
Before appointments, prepare a list of questions for your doctor. Particularly in the early days of diagnosis, your list may include long-term prognosis, symptoms you need to be aware of, other existing medical conditions that may affect the health of your loved one, medicine protocol, non-medical treatments and clinical studies that need you or the Parkinson's patient.
MJFF's caregiver editors†add:
- A Parkinson's diagnosis is a life-changing event for everyone affected. Dealing with a diagnosis of Parkinson's disease is similar to dealing with any great loss. Parkinson's patients and caregivers alike may react with denial, fear, anger, acceptance or even guilt.
- As with any other important development in the lives of two people who are close, a Parkinson's disease diagnosis should be discussed as openly and honestly as possible. Don't consider your own concerns as a caregiver less important than those of your Parkinson's patient. Talking openly about what you are experiencing, and clearly communicating on a day-to-day basis, are critical for both the Parkinson's patient and the caregiver.
- No one wakes up one morning transformed into a "caregiver." Every close relationship has an element of caregiving in it. That's what family and friends do - they take care of each other. You should not need special medical training for any but the most advanced stages of the disease. Most caregivers are primarily called on to help with the daily tasks that may become difficult or impossible for the Parkinson's patient, and to provide ongoing emotional support.
One exception of note: If the Parkinson's patient has trouble swallowing food, it may be useful or even life-saving to learn how to use the Heimlich maneuver to dislodge food stuck in the throat.
Additional Resources for Caregivers and Loved Ones
The Web site includes articles, comprehensive checklists and links to key resources designed to make it easier for family caregivers to quickly find the information they need to care for a loved one.
An social network for neurology patients and caregivers.
A site and ListServ for caregivers.
An social network for persons dealing with grief, death and major loss. Several support groups are available.
Research, patient and caregiver information as well as a biannual newsletter from the Mayo clinic.
Motivating Moves is an approach to exercise that emphasizes coordination, balance, flexibility, postural alignment, diaphragmatic breathing, spatial awareness and dynamic movement range.
MyAgingFolks.com helps connect family caregivers of the elderly to knowledgeable elder care professionals.
An information source for caregivers nationwide. The site also provides contacts for support groups.
A place for people with neurological and brain disorders to find support.
Educated, empowered, e-patients transforming perceptions of Parkinson disease through global collaboration and creative advocacy.
A source of comprehensive, up-to-date information on movement disorders for health care professionals, patients, and the public.
Clinical Trials Need Controls
You can help your loved one by participating in the research.
Living with a chronic disease is most difficult when you donít have much information. You donít know what to expect from the disease or what your choices are in dealing with it.