A diagnosis of Parkinson’s disease can be a shock at first. Most people have a vague understanding of the disease, especially if they know someone with Parkinson’s or have read about it. When your loved one receives a Parkinson’s diagnosis, you will have many questions and, of course, concerns about what this means as the primary caregiver.
Jump ahead to these sections:
- Tips to Help You Care for Someone With Parkinson’s Disease
- Tips to Help You Care for Someone With Advanced Parkinson’s Disease
- Tips to Help You Care for Yourself While Caring for Someone With Parkinson’s Disease
One of the confusing aspects of Parkinson’s disease is the individual nature of the symptoms. Some people have more motor symptoms such as gait and balance problems with tremors, while others also suffer from non-motor symptoms such as depression, dementia, sleep disturbance, and loss of smell.
Parkinson’s disease is progressive, meaning that symptoms worsen over time, but how quickly that happens varies. Since there is no cure for Parkinson’s, the focus of treatment is to improve quality of life by addressing symptoms. As a caregiver, your role may change over time in response to your loved one’s symptoms and needs. Fortunately, there is a great deal of information available to support you as a caregiver.
Tips to Help You Care for Someone With Parkinson’s Disease
As you struggle to make sense of what this diagnosis means for you and your loved one, it can help to understand and accept that things are likely to worsen. Planning for the future while focusing on the present is a delicate balancing act. But we have tips to help you manage, both now and for the long term.
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1. Learn about the disease
Chances are your loved one has a neurologist who is following their care and making treatment recommendations. To some extent, a Parkinson’s physician can predict the course of the disease and the expected prognosis.
As a caregiver, you’re an advocate. To be the best advocate for your loved one, you have to be educated about the disease. Read and learn about lifestyle changes, treatment options, and safety concerns. Don’t be afraid to ask questions and make suggestions to healthcare providers. Include your loved one in these discussions so they feel empowered to decide what is important to them.
2. Keep track of everything
Life is busy. You may have a full-time job, children, or other responsibilities, and now you suddenly have another job—caregiver. One way to help you manage your time is to be organized right from the start.
Everyone has different ways of staying organized, and you’ll need to find the way that works best for you. One thing to consider in deciding is the ability to share information with other family members. There are several online options for keeping track of medical appointments, maintaining a medication list, and filing a copy of advance directives.
Keeping track of physical and mental health symptoms helps medical providers make appropriate recommendations for care and treatment. Although you can’t predict the course of the disease, you can anticipate what you might need to do when you observe your loved one getting worse.
3. Focus on the relationship
Your relationship with your loved one will change. How the two of you manage and adjust will take flexibility and patience. You both may experience anger, frustration, and confusion. These feelings are normal.
Communicating your feelings openly and honestly is a good start. Tending to the positive aspects of your relationship will help build a foundation of care and compassion to rely on when things get tough. Writing down activities, words of love, gestures of affection, and referring to those will help ease tensions.
Don’t hesitate to seek out couples counseling for support. Many therapists specialize in working with couples who are coping with chronic medical conditions.
4. Advance planning
If you have delayed decisions on advance planning, now is the time to complete these. Consult with an estate planning attorney to finalize advance directive documents for your state. These documents will include a power of attorney and end-of-life decisions.
You and your loved one may find these discussions challenging but necessary. One of the possible consequences of Parkinson’s is dementia, where you will need to make surrogate healthcare decisions and help guide care.
Advance planning also includes the possibility of supportive residential care. Unless your loved one has a long-term care policy, you will need to pay for this care. Talk with a financial advisor on how to plan for that possibility.
5. Home assessment
You and your loved one may have lived in the same home for many years and been very happy doing so. But now, you will want to take a closer look at how to make the home safe and accessible for your loved one.
Mobility and balance problems will require some modifications, including grab bars and stair railings. An occupational therapist can do a complete home evaluation and make recommendations for changes and additions.
6. Emphasize quality of living life
Regular physical activity can have an enormously positive effect on someone with Parkinson’s. Many people with the disease benefit from Tai Chi, yoga, dance, swimming, walking, and stationary biking. All of these activities improve mood and can help your loved one cope with depression.
Most health experts recommend a balanced, healthy diet for people with Parkinson’s. Include whole foods such as vegetables, fruits, whole grains, and high-quality protein. Some specific foods may be contraindicated with certain medications, so check with your loved one’s doctor to get guidance.
7. Have fun
You and your loved one had fun before the diagnosis of Parkinson’s, and you can still have fun now. Humor, play, and creativity are vital to well-being. Talk with your loved one about what activities they would like to continue and any new ones to try. Finding ways to bring laughter into your daily lives will help you both cope with stress.
Tips to Help You Care for Someone With Advanced Parkinson’s Disease
Advanced Parkinson’s can involve worsening symptoms such as dementia, depression, anxiety, trouble swallowing, difficulty speaking, and mobility issues requiring a wheelchair. At this stage of advanced Parkinson’s, caregiver duties are intense and time-consuming. Caregiver burnout is a real danger at this point.
8. Ask for instruction
With advanced Parkinson’s, everything takes care and attention, from dressing to bathing to eating. Safety is the primary concern.
Your loved one may be receiving home health, so this is a good opportunity to learn techniques to provide safe care. There is a high risk of choking and falling at this stage, and you might need round-the-clock care.
Look online at caregiver resources provided by the Parkinson’s Foundation to get suggestions on how to help with activities of daily living.
9. Consider help
At this point, considering help in the home is reasonable and acceptable.
Many people choose to hire a private caregiving agency to assist with daily care. Hours can be flexible, but make sure the caregivers are able under state regulations to provide what your loved one needs.
10. Watch for signs of depression
Although depression is common in people with Parkinson’s, that doesn’t mean that it shouldn’t be treated.
Talk with your loved one’s healthcare provider about signs of apathy, sadness, fatigue, and hopelessness. There could be medications or counseling that can help.
Tips to Help You Care for Yourself While Caring for Someone With Parkinson’s Disease
Taking care of yourself while caring for someone with Parkinson’s disease is crucial to your health, well-being, and ability to continue caregiving. Our tips will only work if you include them in your daily life. One idea is to keep a daily journal of your self-care efforts so you can see the progress you make.
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11. Take time off
You are probably thinking, how can I take time off? The answer—with lots of planning and a commitment to understanding the value of time away from caregiving. The way you can do this is to ask family or friends for some relief. Asking for a short stay with your loved one can give you much-needed time to yourself.
If you are working, check with your employer on possible leave benefits that might include flexible working arrangements or caregiving leave. More and more employers understand the stress and time that caregiving takes and have policies to support their employees.
12. Join a caregiver support group
Caregiver support groups can be a terrific way to connect with other people who know and understand what you’re going through. Support groups also provide an opportunity for exchanging ideas on care tips.
13. Explore caregiver resources
Caregiver resources abound on the internet. Some of these resources are specific to Parkinson’s, and others offer general information on caregiving. Local resources are worth exploring to see if any respite programs are available to give you a break.
14. Self-care habits
The stress associated with caregiving can lead to unhealthy habits. Pay attention to a healthy diet, getting exercise, relaxation techniques, and avoiding too much alcohol. Healthy habits mean accepting that you deserve time to focus on yourself.
15. Maintain a social life
Time has a way of passing you by when you are a caregiver. Before you know it, you have lost touch with friends and family when you need them the most. It may not be possible to maintain the same social life you had before your loved one was diagnosed with Parkinson’s, but you can find other ways of staying connected.
The responsibility for maintaining a social life will be up to you. When you can, include your loved one in any get-togethers. But also honor your relationships where alone time with a good friend can lift your spirits and give you time to talk about your feelings. Most people want to help; they just don’t always know how.
Parkinson’s Caregiving Tips
You and your loved one can have a meaningful and full life after a Parkinson’s diagnosis. Assemble your support team, take care of yourself, and offer your complete love and compassion through the journey.
- “Parkinson’s Disease.” National Institute on Aging. nia.nih.gov
- “Parkinson’s Disease and Caregiving.” Family Caregiver Alliance. caregiver.org
- “Fighting Parkinson’s Disease with Exercise and Diet.” John Hopkins Medicine. hopkinsmedicine.org
- “Caring for Someone with Advanced Parkinson’s.” Parkinson’s Foundation. parkinson.org
- “Managing Care in the Late Stages of Parkinson’s Disease.” Parkinson’s Disease.net. parkinsonsdisease.net