People with Parkinson’s disease rely on caregivers for a wide range of support — from driving them to doctors’ appointments to helping them get dressed. As the disease progresses, dependence on caregivers increases substantially.
Caregivers can help people with Parkinson’s adjust to the disease’s effects on the body. And knowing that a loved one is cared for can help the entire family adjust to the diagnosis.
But the person with Parkinson’s disease isn’t the only one who should be cared for.
Caregivers must take care of themselves too. Being a caregiver can be a complicated — as well as a physically and emotionally draining — experience.
Here are 12 ways to handle your role as a caregiver without neglecting your own well-being.
As caregiver, it’s important for you to become familiar with all aspects of the disease. This will ensure better care for the patient and easier transitions for you as the disease progresses.
It will take time and continual effort for you to learn about the many varied Parkinson’s symptoms and how to manage them. As time goes on, you will also need to learn about medication regimens, which can be complex.
Several organizations, including The National Alliance for Caregiving and the Family Caregiver Alliance, provide assistance and care specifically to caregivers. These caregiver support groups offer:
- education seminars
- enrichment resources
- connections to other individuals in similar situations
Parkinson’s disease begins very slowly. It typically starts with a small tremor in one hand or difficulty walking or moving. Because of this, the role of caregiving is often thrust on a person with very little warning or a chance for preparation.
But once the diagnosis is made, you will lessen future stress by preparing now for the road ahead. Much of the work can wait, but you will want to start thinking now about the basics, such as:
- Who will do food shopping and prepare meals?
- How will medications be stored and administered?
- What will have to change in the home setup to keep things safe and easy?
Of course, everything doesn’t have to change at once. And your loved one can probably share in a lot of it in the beginning. Talk with your doctors and other medical professionals about when and how much to restructure your lives.
As your loved one’s Parkinson’s progresses, their mental abilities will likely diminish. They will be less able to make decisions and plan.
At that point, prioritizing planning ahead will help both of you. Using an app may be helpful to make daily schedules as well as reminders for appointments, visitors, and special occasions.
When a loved one is diagnosed with Parkinson’s disease, treatment for the disease should begin almost immediately. This is a time of major change not only for the person with Parkinson’s but also for you, the caregiver.
Doctors strongly encourage caregivers to attend doctors’ appointments. Your input may help your doctor understand:
- how the disease is progressing
- how the treatments are working
- what side effects are occurring
As Parkinson’s disease progresses, dementia may make the patient’s memory worse. By going to the appointment, you can help remind your loved one of what the doctor said or instructed. Your role during this time is especially important to the treatment plan.
Many family members, friends, and neighbors will be happy to help if you need to run errands or just take a break. Keep a handy list of people you can call on occasionally when you need help.
Next, designate which people are the best to call on for specific situations. Some people may be more helpful with certain tasks, like grocery shopping, mailing packages, or picking up children from school.
Caring for a loved one can be deeply satisfying. It’s a chance for your family to draw together as you face the challenges of Parkinson’s disease head-on.
However, providing emotional and physical care for someone with an illness can become stressful and, at times, overwhelming. Balancing your personal life with caregiving can be difficult. Many caregivers will face periods of feeling guilty, angry, and abandoned.
Of course, you don’t have to experience this alone. Support from other family members or professionals can help:
- relieve stress
- reevaluate approaches to treatment
- offer new perspective on the caregiving relationship
Ask your doctor or your local hospital’s health outreach office for contact information for a Parkinson’s disease caregiving group. The person you’re caring for will likely also benefit from being part of a support group.
Support groups allow for open communication with other people facing the same struggles. These groups also provide an opportunity to share suggestions, ideas, and tips among the group members.
Especially in the latter stages of Parkinson’s disease, caring for your loved one may become more difficult. When this happens, you may need to seek professional care from a care facility or organization.
Certain symptoms and side effects of Parkinson’s disease may be best treated with professional assistance or home health nurses, or in a nursing home environment. These symptoms and side effects may include:
- difficulty walking or balancing
- severe depression
At some point, you may feel that both you and your support network are stretched thin. You’re tired, and you don’t feel comfortable asking friends and family to pick up the slack.
But the yard really needs upkeep. And the house isn’t as clean as it should be. And suddenly, it seems, you’re totally out of food, as well as the energy to go grocery shopping.
Hiring a gardener, a house cleaner, or a grocery delivery service can help if this is an option for you. Your physical well-being will thank you for it.
Caring for a loved one with Parkinson’s can place a great deal of stress on your relationship. A person you love is changing both physically and mentally, and both of you are needing to adapt.
The Michael J. Fox Foundation recommends keeping communication as open as possible and being flexible with your changing roles. Be aware that some changes, such as new apathy or irritability, is not directed personally at you.
If both you and your loved one are willing, consider consulting a therapist together. You can work through any of the anger, denial, or upset you are feeling, and find ways to keep your relationship healthy and loving.
As caregiver, you are going to feel stress. You may feel fear, anger, helplessness, and more as you meet new challenges every day.
It’s important for you to know what triggers your stress and develop practices to manage your emotions and release them effectively. Journal writing, going for a walk, or calling a friend can all help.
Other coping skills might include:
- Do something you enjoy. Tend the garden, talk to a neighbor, or read a book. Take at least a few minutes every day to enjoy yourself.
- Try deep breathing. Even spending 1 minute taking 10 or so deep breaths can give your mind a rest and your energy a boost.
- Get a massage. Getting a massage can release stress and give you the much-needed sense of being cared for.
- Try a TV show. It’s OK. Be a couch potato for a half-hour or so. Watch your favorite TV show. It may help distract you from difficulties.
- Exercise. This is one of the best stress-busters there is. Make time for it and find one you enjoy.
As a Parkinson’s caregiver, it is sometimes hard to remain rooted in the here and now.
In one moment, you might harbor hope that your loved one will somehow miraculously return to normal and be themselves again. In the next moment, you might think differently.
These are the times to take a few deep breaths and focus on how things truly are in this moment. Ungrounded fears and hopes can distract you from carrying on with life as it is.
If you need it, professional help can teach you tools and tips for how to do this. Mindfulness training, talk therapy, and meditation are all avenues you might explore.
The Parkinson’s Foundation points out that part of caring for your own mental and emotional well-being comes from noticing and understanding the changes both you and your loved one are experiencing.
The physical abilities of your loved one will change over time — and sometimes very suddenly. It is up to you to notice the change since they may not. By paying attention to these changes and managing them, you can make the road ahead easier for both of you.
You also have to keep a close eye on your own changes.
Whether you’re a spouse, parent, child, or friend, your role as a caregiver is to be on call 24/7. You’ll likely feel as if your entire world revolves around your loved one, while your personal life takes a backseat.
As the demands of caring for a loved one increase, many caregivers neglect their own health. It’s important to be proactive and take care of yourself. Keep current with your own medical appointments and healthcare needs.
Other things you can do to stay in shape include:
- eat a balanced diet
- exercise regularly
- get proper sleep
- schedule social activities for yourself
- get temporary respite care when you need it
Caregiving for someone you love who has Parkinson’s is a major undertaking that can bring changes and challenges to every aspect of your life.
You will likely face emotional and physical hurdles, but also joy and the pleasure of helping someone you love. A brief prescription for succeeding as a caregiver includes:
- educating yourself
- asking for help when you need it
- taking care of yourself
Don’t be shy about asking your medical providers, caregiving organizations, friends, and family for help. You need to do everything you can not only to help your loved one, but to also keep yourself healthy and positive as well.