Parkinson’s disease affects the whole family, not just those who are diagnosed. This is especially true if you are the primary caregiver for a spouse, parent or other loved one with the disease. Now more than ever being a caregiver can be challenging with changes to doctor visits, exercise classes moving to virtual and social isolation due to the COVID-19 pandemic. The information on this page provides guidance on what to expect from Parkinson’s caregiving and how to care for your own health.
Tips during COVID
1. Try to be patient. Many of us are feeling overwhelmed, anxious and sleep deprived due to the pandemic. We’re experiencing loads of new information and incredible uncertainty. Give yourself and your loved one with Parkinson’s extra time, space and compassion.
2. Get or stay active. Whether on your own or with your loved one, exercise is one of the best things you can do for your body and mind. Even with social distancing or gyms closed, you can work out at home or take a long walk with your partner if restrictions allow.
3. Get support. Make an effort to stay well-connected with family and friends who can offer emotional support. If helpful, consider seeing a therapist virtually or joining an online support group. Also ask for help where useful – perhaps another member of your family could pick up groceries or help with errands.
4. Take care of you. Taking care of yourself is one of the most important (and sometimes most difficult!) things you can do as a care partner. Consider scheduling regular breaks, social time (virtual coffee chats or book clubs, for example) and exercise.
5. Find a “pet” project. Some people and their care partners find it fun and helpful to take on a project together – anything from selecting a recipe and making dinner together, doing a jigsaw puzzle, playing cards, board game or gardening to name a few.
How can I help manage my loved ones care
A spouse, adult child or other family members can play a significant role in helping a person with Parkinson’s disease stay organised and receive the best care possible.
- Find a movement disorder specialist. A movement disorder specialist is a neurologist with additional training in Parkinson’s disease. This specialised doctor is generally on the cutting edge of Parkinson’s disease care and can help your loved one build a plan that works best for them.
- Attend doctor’s appointments with your loved one. Doctor’s appointments can be overwhelming, and it’s helpful to have another person along to listen and take notes. A partner may also have a better sense of whether mood symptoms like depression and apathy are a concern. Take a list of questions with you to help guide the appointment and ensure you get all the information you need.
- Stay organised with a calendar that you can take to doctor visits. Note doctor and therapy appointments, the start and stop dates of medicines, and any side effects you may notice.
- Keep a list of all doctors’ phone numbers and addresses in case of an emergency. Also keep a separate and updated list of all prescription medications, their dosages and instructions and the prescribing provider. Note allergies or medication intolerances as well.
- Familiarise yourself with the terms of your loved one’s medical insurance. Know what services, including prescription medication coverage and therapy session benefits, are included. Talk with your physician about the long-term needs of your loved one, and make sure his or her current medical plan will meet those needs. Engage the services of a social worker if you need help navigating these issues.
- Understand the disease. You do not need special medical training to help at most stages of the disease, apart from the most advanced stages. Most caregivers are primarily called on to aid with daily tasks that may become difficult or impossible for someone with Parkinson’s and to provide ongoing emotional support.
- Exercise together. Besides medication, exercise is one of the most beneficial ways to help Parkinson’s disease symptoms. Your loved one may be more likely to stick with a plan if you find an exercise you enjoy together.
The Michael J. Fox Foundation’s staff movement disorders specialist, Rachel Dolhun, MD, gives practical advice for managing Parkinson’s with your partner on a daily basis and provides tips to help you stay well while doing so.
Long-Term Decisions for Caregivers
Your role in your loved one’s care may also change as the disease progresses. It’s important to know what to expect from the disease and to make plans around eventual disease progression.
- Prepare for later-stage symptoms. Parkinson’s disease is different for everyone, but it’s helpful to familiarise yourself with potential later-stage symptoms of the disease. Some people with Parkinson’s disease experience cognitive impairment, which can range from mild impairment – difficulty with planning and organising activities – to more serious dementia. Parkinson’s disease affects movement, and some people with the disease require a wheelchair later in life. The severity of these symptoms depends on the person’s age at disease onset and overall health.
- Discuss long-term preferences when your loved one is first diagnosed. Discuss the possibility and feasibility of full-time care, assisted living and hospice care. Make sure your loved one has his or her will in order.
- Consider changes that can make your home safer for your loved one. Start with small changes, like clearing the floor of potential obstacles such as throw rugs and extension cords. Add more lights around the house, especially touch lights and lights that respond to sound. If it’s in your budget, consider installing railings along walls and hallways. Some families choose to downgrade to a smaller home or one-story home after a Parkinson’s disease diagnosis. You can also consider building ramps, stairlifts and wider doorways if your budget allows. Medicare covers different types of portable medical equipment, but not permanent installations.
Remember that prioritising your own health allows you to provide the best care for your loved one.
Dealing with Caregiver Stress and Burnout
A Parkinson’s disease diagnosis, and all the care coordination that comes with it, can be very stressful. Many caregivers spend a large amount of their time providing care – in many ways, it may feel like a full-time job. But remember that prioritising your own health allows you to provide the best care for your loved one.
In particular, be on the lookout for caregiver burnout: a state of physical, mental and emotional exhaustion that may come with a change in attitude. You may feel more negative and less caring toward your loved one. If you begin to feel this way or begin experiencing symptoms of depression or anxiety, meet with a mental health professional.
- If possible, bring in professional help. If in-home care isn’t in your budget, try hiring a home health aide to come visit for just a few hours a week or month. It gives you a chance to relax or take care of errands without breaking the bank.
- Connect with other caregivers. Parkinson’s disease support groups can be helpful both for people with the disease and their loved ones.
- Communicate with your loved one about what tasks he or she may be able to perform solo. Working as a team helps keep your loved one engaged in his or her own care, while potentially giving you more breathing room.
- Make time for yourself, even if it’s just for 15 minutes a day. Enjoy a cup of tea, a chapter of a good book, write in a journal or simply breath deeply for a few moments. It may sound impossible to fit into your schedule, but a little bit of self care can go a long way.
- Exercise regularly and get enough sleep. Regular exercise has been linked to decreased depression symptoms and stress levels. Relaxing routines such as yoga or tai chi can also be effective. Studies suggest that exercise may also help you sleep better at night.
Community Support Service – Australia
Navigating Community Support Services in Australia is a challenge. Watch Prof Simon Lewis interviewing Clinical Nurse Consultant, Marilia Pereira about myagedcare and the National Disability Insurance Scheme for people with Dementia, Parkinsons and other ageing brain diseases