In early August 2023, the Parkinson’s Foundation hosted movement disorders specialist Dr. Janis Miyasaki on the topics of why addressing caregivers’ needs is vital, reasons caregivers might be reluctant to seek help, and sources of emotional support for caregivers. She speaks with many caregivers for those with movement disorders as part of her work, and is familiar with signs of caregiver strain. Also, Dr. Miyasaki cared for her mother with Parkinson’s Disease (PD). Even as a specialist in the field, she found it very difficult, but found that caregiving can also be an incredibly rewarding experience. Note: there is nothing specific about PD in this webinar. We share below our notes from the event.
During her presentation, Dr. Miyasaki challenged some of the thought processes that may prevent care partners from seeking help. Care partners may hesitate to ask their adult children for help, thinking that they don’t want their adult children burdened. Dr. Miyasaki said that many children are relieved and happy when their parent(s) ask for help with caregiving. Neighbors and friends can also be excellent at providing help with errands, and emotional support.
During the webinar, especially the question and answer section, her empathy and compassion for caregivers was apparent. At the end of the question and answer session, Dr. Miyasaki offered some final encouragement to care partners: “You are doing a very important job. Never discount that, and be kind to yourself.”
As a source of emotional support, Dr. Miyasaki mentioned support groups. If you live in Northern or Central California, see our list of PD caregiver-only support groups
If you are outside this area, you might consider some of these video-based support groups
A recording of the webinar is available on the Parkinson’s Foundation YouTube channel
You can find resources for care partners and caregivers on Stanford’s website:
Below are my paraphrased notes on Dr. Miyasaki’s presentation, and the question-and-answer session.
“Care Partners – Why They and Their Needs Matter”
Speaker: Janis Miyasaki, MD, MED, FRCPC, FAAN
Webinar Host: Parkinson’s Foundation
Webinar Date: August 9, 2023
Summary by: Jordan Dagan, Stanford Parkinson’s Community Outreach
Dr. Janis Miyasaki is the division director of neurology at the University of Alberta, and also serves as the VP of the American Academy of Neurology.
WHAT DOES A CARE PARTNER DO?
- Attend doctors’ appointments
Having another set of eyes and ears can be very helpful for someone with PD. The care partner can take notes, letting the person with PD focus on the appointment and conveying their needs to their doctor. The care partner can also help advocate for their loved one, and provide extra history to the clinician. Care partners often organize the majority of medical care, which is essential for those with PD who also have other medical or mental health conditions.
- Help with making decisions
This doesn’t only include making medical decisions. People with PD often have trouble putting together complex information, prioritizing what information is important or relevant, and planning for the future. Their care partner often helps them collaborate with their care team, and with the care partner themself, to come to an agreement.
- Planning for the future
Loved ones with PD may not realize how much they are affected by their disease, and may have trouble predicting how future changes will affect their day to day life. A care partner offers an outside perspective on the challenges their loved one is facing, and can help anticipate their loved one’s needs in future months or years.
NO TWO CARE PARTNERSHIPS ARE THE SAME
Care partners experience a very wide variety of experiences when caring for their loved one. Each relationship between a person with Parkinson’s and their loved ones is different. As the relationships change from friend/spouse/neighbor to care partner/caregiver over the course of disease progression, unique challenges will arise. In addition, each person’s presentation of PD will be different, and symptoms will also vary over time. These combined factors can be overwhelming, especially if the person with PD previously filled a leadership role in the relationship.
Dr. Miyasaki recommended that as care partners stay open to the idea of explicitly renegotiating their needs with their loved one, and also to the possibility of asking for help. She says that caregiving for a loved one is a gift, and can offer meaning in life, affirmation of personal values, and satisfaction for the care partner.
THE IMPACT OF CAREGIVING
Dr. Miyasaki shared the evidence-based impacts that caring for a loved one has. Compared to those without, people with PD who have an involved and encouraging care partner have better outcomes for their health, better quality of life, and less emotional distress. Care partners help their loved ones adhere to their treatment plan, offering reminders and encouragement, and finding ways to engage with them on a personal level. Exercise is especially important for people with PD, and having a care partner present to help them exercise regularly can both improve a loved one’s mood, sense of self-efficacy, balance, and overall mobility.
Care partners provide perspective on how the changes with Parkinson’s will affect their loved one on an individual level, which leads to more thorough planning for the future. This improves access to government services and hospitals, and better accessibility in the home. Care partners also offer emotional support if their loved one must move houses to access care. Dr. Miyasaki said that moving is often a difficult process for people, because of the emotions and memories associated with their current home.
SIGNS OF CAREGIVER STRAIN
In the last month, has your own health suffered due to the stress of caregiving?
In the last month, have you…
- Felt stressed by balancing caregiving with other responsibilities?
- Felt that you don’t have time for yourself?
- Felt that you have lost control of your life since your loved one’s illness began?
- Felt stress when near your loved one?
In the last month, has your loved one with Parkinson’s…
- Put strain on your other relationships?
- Shown physical aggression towards you or others?
- Shown sexual aggression towards you or others?
If you answered “yes” to any of these questions, this is important for your care team and your loved one’s care team to know. They may be able to help, by changing your loved one’s treatment plan or medications/dosage, or by recommending changes to your own care routine. If your loved one is showing aggression, either physical or sexual, to you or to others, a change in medication may help decrease the frequency of these instances.
RELUCTANCE TO ASK FOR HELP
Common sentiments shared by care partners looking after someone with Parkinson’s include:
- “I’m worried others will think I’m weak.”
Asking for help is a sign of great strength! Asking for help means you’re not giving up, and is a sign of resilience. The people you ask for help will probably respond more positively than you think; many people are honored and relieved when someone they care about comes to them for help.
- “I feel guilty that I want time away from my loved one,” or “I’m not doing enough.”
It’s not selfish to want a full night’s sleep, a shower without worry, a social engagement, relief from anxiety, or to realize you can’t manage all aspects of caregiving on your own. Carers have social, emotional, and health needs too! When was the last time you slept through the night? When was the last time you did something nice for yourself? Don’t neglect your own care! You won’t be able to help your loved one with PD if you end up getting sick or injured because of stress and fatigue. Consider how your loved one would cope if you had to go to the hospital for a time.
- “I’m not keeping the promise I made to take care of my loved one.”
How could you have made that promise, when you didn’t know what would happen? Your loved one’s needs may have progressed slowly and “snuck up on” you both, or might have progressed faster than you were prepared for. You can’t have predicted how your loved one’s support needs would change, and you have limited knowledge of the condition. Even Dr. Miyasaki had a lot of difficulty caring for her mother, and she’s a professional! She encourages caregivers to give themselves some grace and forgiveness.
- “I don’t want to burden others. They have their own lives,” especially when considering asking for help from adult children of the care partner or loved one with PD.
Consider the times the people you might ask for help, especially adult children, needed your help. You helped them, and took care of your children when they were sick or scared. You made time for them. Most people, including adult children of someone with PD and/or their care partner, respond with relief and happiness at hearing a call for help. Dr. Miyasaki says that she’s heard many times, “I knew something was wrong, but my parent kept saying everything was fine. I’m glad my parent feels they can call on me for help.”
SOURCES OF HELP
Adult children, and/or other relatives, offer individualized care by those you and your loved one are already familiar with.
Neighbors and friends may be especially good at providing help with transportation, running errands, house-sitting, taking care of pets, and/or emotional support. They can help offer a break from caretaking, privacy from your loved one, or even a brief vacation.
Your loved one’s neurologist, or other members of their care team, can offer professional expertise with PD, referrals to government agencies or nonprofits, access to help lines or hotlines, and/or referrals to mental health professionals. They can assist care partners with planning for the future, including predicting how their loved one’s needs might change over time.
Local, state, or federal government agencies have departments and staff prepared and trained to offer help, including in-home nursing, or referrals to local sources.
Nonprofits offer lots of specific experience with PD, access to support groups and personalized resources.
Support groups are a great source for emotional support, networking, and personal experiences.
Therapy or counseling can help caregivers process feelings of frustration, grief, guilt, anxiety, anger, and more.
Questions and Answers:
(This section is paraphrased from the video recording. Timestamps are included, marking when the questions were discussed during the linked YouTube video.)
(28:50) Comments by Dr. Miyasaki:
Being a care partner is a journey, and challenging with the current healthcare resources available. When Dr. Miyasaki became a care partner for her mother, her lack of knowledge surprised her, as did the lack of care she and her mother were able to access through the healthcare industry. She understands the challenges of caregiving, and the experience of caregiving as all-consuming. She notes that it is important for centers of excellence to pay attention to care partners. When the care partners do well, the patients do well; care partners are part of the circle of care.
(30:50) Question: How can we communicate to others that we’re on a caregiving adventure?
Answer: It’s challenging, because most of the world prefers to hide their struggles. Just because someone functions very well at one time, doesn’t mean they’re not struggling behind the scenes. Patients often say with pride, “people can’t tell I have Parkinson’s,” but this is not always the case. The renegotiation of the relationship between care partner and patient is difficult. Maintaining mutual respect and maintaining autonomy must be balanced with acknowledging of difficulty, especially with making decisions. Patients may sound capable for periods of time, even when cognitive difficulties may be present. A patient’s paranoia may be expressed to others, bringing difficulty for the caregiver. At each step of the journey, it is important to share what you are experiencing as a caregiver, and what can help you to stay resilient. It’s a marathon, not a sprint.
(33:55) Question: How can we help a patient accept that they need help from a care partner?
Answer: Share your own experience of needing help and how you’ve benefited from it. Especially when attending healthcare appointments, there is so much information in such a short time that having someone to simply take notes can make a huge difference. A study was done on what patients remembered after a doctor’s appointment that was several minutes long, and patients did not remember what the doctor intended to emphasize! In a specialist environment, appointments can be much longer, and the amount of information can be overwhelming. Patients are often unsure how to report the neurologist’s notes to their care partner or family. Another pair of eyes and ears, and another advocate to your doctor, can make a huge difference. Patients often want to show their best selves to their doctor, but the doctor can’t help with what they don’t know about. Sharing your loved one’s experience with their doctor may seem like “tattling” at first glance, but it can truly help develop your loved one’s care plan to make it easier to adhere to.
(36:50) Question: Do you have any suggestions for how to find a quality care partner, if you don’t currently have a care partner during your journey with Parkinson’s?
Answer: Finding an engaged care partner can be very difficult. This is especially true for women with Parkinson’s, even if they are married. Adult children can help provide support. If they don’t live in the same area as their loved one, they may be able to attend doctor’s appointments and provide support via Zoom. Neighbors can be a strong resource as well. Dr. Miyasaki encourages patients to look outside the box, and ask themselves, “who would I call if I was in an emergency department? Who would pick up the phone and come help me?” Often people have a very good sense of what to do to help others. A care partner is a sounding board, connected enough that they can help think of solutions to problems.
(39:55) Question: How can care partners communicate to their loved one that they need a break, or that they need outside support?
Answer: This is a very common challenge, and introducing others early in the Parkinson’s care journey is important. Caregiving help introduced early, rather than postponing until the situation is dire, will give the both person with Parkinson’s and the caregiver peace of mind. Adult children or other family members can help ease the transition by providing care from a familiar source, but some care partners report that their relatives visit, but don’t provide active care for the person with Parkinson’s. Letting visitors know that you’ll be leaving the house, if only for a couple of hours to run errands, can introduce the reality that you need a break from caregiving. There are also day programs which provide therapy, exercise, social time, and structured routine. This helps the person with Parkinson’s to socialize and have recreational time independent of their primary care partner.
(43:55) Question: How can care partners cope with guilt for needing a break, or for feeling relief when they find time to themselves?
Answer: Try to expand your activities as a caregiver to include friends and relatives. It’s common for caregivers to feel a combined tension between feeling that they’re not doing enough, and also feeling exhausted. Dr. Miyasaki says that guilt and tension is a common sign of caregiver strain.
(45:55) Question: When a person with Parkinson’s wants to do something physically taxing which isn’t realistically possible for them to do, should a care partner let them try or should they intervene?
Answer: That’s a tricky question. Dr. Miyasaki encourages care teams to break the task down into small steps, and see how the person with PD manages. For example, if the person with PD wants to go on a vacation in another country, start by accompanying them while taking a trip to a museum for a couple of hours. If the person succeeds at the smaller task, make a plan for incrementally raising the amount of difficulty. If they struggle with the smaller tasks, make a plan for how to get the person’s needs met without them taking steps that may be dangerous. Smaller tasks may still let a person feel connected and have meaning. During this process, try to offer emotional support; it may be disheartening for a loved one to compare their abilities several years ago, to their abilities in the present.
(49:00) Question: How can people with PD respond when they share their diagnosis, and someone says, “I’m so sorry,” or expresses pity?
Answer: People show their feelings and judgment in their words and tone. Many of Dr. Miyasaki’s patients respond by saying that though this isn’t how they imagined their later years, they’re making the best of it. The person with PD might ask “what’s behind you saying you’re sorry,” or they might share experiences they’re still able to enjoy. It’s important to help people reframe what is possible while living with PD. By expressing sadness, people may intend to acknowledge the difficulty that comes with living with PD. People often don’t know what to say, but they want to show that they care. It depends on the person with Parkinson’s, whether this type of comment is felt as pity, or as validation of a struggle. Many people with PD feel hurt by dismissal of their symptoms as well.