On November 12th the Davis Phinney Foundation hosted a webinar on Mental Wellness for Parkinson’s Care Partners. The speaker was social worker Elaine Book who touched briefly on several aspects of caregiver wellbeing with Davis Phinney Foundation moderator, Melanie Dizon. Topics broached included ambiguous loss, stress reduction tips to prevent caregiver burnout, communicating about changes brought about by Parkinson’s, self-care during COVID, and more.
You can access the webinar here.
In this webinar Elaine talks about the importance of talking through your feelings in the face of the uncertainty and grief that a Parkinson’s diagnosis brings. She believes that knowledge is power and advises caregivers to continue to educate yourself so you can be as prepared as possible, even for the unexpected.
The Stanford Parkinson’s Community Outreach Program’s website is a great resource for continued Parkinson’s education on several topics mentioned in this webinar. Our staff can even provide referrals to counselors on the peninsula (San Francisco Bay Area) to help you and your loved one talk through your feelings and, as Elaine says, “peel back the layers of the onion” after many years of marriage. Reach out to our staff anytime.
Elaine mentions what you all know, that nonmotor symptoms are more difficult to cope with than motor symptoms, particularly anxiety, depression, apathy and hallucinations. Learn more about the diagnosis and management of those symptoms:
Elaine also talks about how being diagnosed with Parkinson’s when you are still working and have dependents, is very different from being diagnosed in retirement years. The profile of care partners at those different ages is also significantly different and caregiver burnout can happen at any age. Find more information about those topics:
Elaine mentions attending a caregiver support group and journaling to relieve stress. Support groups are currently offered virtually, and it works well. Find a support group at a time that is most convenient for you here:
- Northern California Parkinson’s Caregiver-Only Support Groups
- Stanford-run Parkinson’s Caregiver-Only Support Groups
My notes are a quick read, and the webinar is worth watching if you need a reminder to prioritize your own selfcare.
So, on with my notes…
Mental Wellness for Parkinson’s Care Partners
Davis Phinney Foundation
Speaker: Elaine Book, MSW
Elaine became involved with Parkinson’s care families when looking for part time work when she had small children. She found working with Parkinson’s families and Parkinson’s care partners to be rewarding and it has become her passion.
There is a lot of individual uniqueness to Parkinson’s disease, but there are commonalities of both motor and nonmotor symptoms. In fact, the nonmotor symptoms are more difficult to deal with and impact quality of life for both the person with Parkinson’s and the care partner. Anxiety, depression, apathy, and hallucinations are often the most difficult to cope with.
Challenges also change throughout the progression of the disease, so the challenges of caregiving continually change as well. Young onset diagnoses have very different challenges than those of a person diagnosed after retirement. The profile of the care partner is so different at both ends of that spectrum, as well.
The experience of loss or grief is common to both people diagnosed with Parkinson’s and their care partners and families. People at every stage of Parkinson’s are referred to the clinic where Elaine works, so she has followed the Parkinson’s journeys of many families.
There’s a lot that can be done to cope with the uncertainty of the future and progression of PD. Acknowledging your feelings about this is first and foremost. Keeping the lines of communication open between family members and your medical team is crucial. Educating yourself is very useful because knowledge is power. When you know what you might expect you can prepare yourself for all eventualities. For caregivers it can be helpful to understand what your family member with PD is capable of controlling and what they can’t, like depression, anxiety, and apathy. Reality is probably going to be somewhere between the worst you’re envisioning, and the rosy future Parkinson’s foundations often portray.
Ambiguous loss is another thing that’s difficult to manage. Ambiguous loss is the idea that someone can lose their physical abilities but still be cognitively present, or vice versa. It can be difficult to manage these losses that are changing every day. One resource to learn more about ambiguous loss and how to cope with it is Pauline Boss is the guru on ambiguous loss. She has authored or co-authored five books on the subject and hosts a website on the subject.
I am most commonly referred to a Parkinson’s family when there are signs of caregiver burnout. Caregivers don’t realize burnout is on the horizon because stress builds over time as the caregiver becomes responsible for more and more tasks. Caregivers also often have unrealistic expectations, like feeling they should be able to do everything that is asked of them.
Signs of burnout include feelings of being overwhelmed and can manifest as over or under sleeping or eating, depression, apathy, more frequent colds or feeling ill, or irritability that is not typical of a person’s personality.
To overcome burnout, you need to address your feelings. It doesn’t matter how. You can talk with friends, family, clergy, counselor, etc. Each individual needs to decide what they can and can’t handle in their given circumstances. Acknowledge you are not a nurse and don’t have the training for everything that is being asked of you, especially if you are younger with children and still working. It is too much for one person to do everything.
Sometimes, stepping back from doing everything yourself, hiring help or moving your loved one to a facility and managing their care is the best way to be a caregiver. If you choose to care for someone at home, think about what you need to know to do the job of caregiving well. That involves connecting with experts, like PT, OT, SLP, fall prevention, etc. so you have all the tools in place. You might trade chores with neighbors. One caregiver Elaine knew traded cooking for a neighbor family in exchange for them doing her yard maintenance.
Stress can build when you avoid addressing a topic that needs attention, like having your loved one stop driving, deciding whether to hire in-home help, etc. The best way to decrease that stress and anxiety is to actually have the conversation with your loved one. You don’t have to take on these conversations alone. You can get help mediating the conversation, like clergy, a social worker, even a family member or friend your loved one tends to respect and listen to.
Knowing you have back up care in place in case something happens to you as the primary caregiver can also help reduce anxiety and stress. Put back up people in place for transportation, meals, housekeeping, house maintenance, etc. and keep the information on your refrigerator where everyone can find it. You might even prepare a ‘go’ bag in case you have to head to the hospital unexpectedly and stay for a few days. A go bag should include all the PD medications, change of clothes, etc. You may never use these backups but having them is place relieves anxiety.
Attending a support group or journaling lets you relieve stress and anxiety by getting your thoughts and emotions out. Expressing your thoughts and emotions in complete sentences provide clarity and perspective. It helps you determine which direction in which you should proceed when you come to a crossroads, things are not going smoothly, or you find yourself being stressed out.
The most common idea I hear that is I don’t love the person with Parkinson’s in the way I did before Parkinson’s. They feel the person with Parkinson’s has changed and intimacy has changed. They still love them and are willing to provide care, but the relationship has changed in the extreme.
Another common feeling I hear from PD caregivers is resentment about Parkinson’s impacting their lives and/or how the family member with PD is caring for themselves. Caregivers feel their loved one isn’t exercising enough or doesn’t have their meds adjusted properly but can’t convince them to do something about it. That inaction is making daily life more difficult for both the person with PD and the care partner.
Communication is key for couples to manage these feelings. It is common for people to have imperfect communication before Parkinson’s enters the picture, so people need to learn to communicate effectively. There is also a difference of perspective about the disease between partners, so they need to find common goals and common ground to overcome resentment.
On the care partner side of the equation there must be some ‘letting go.’ You can’t control everything, and you need to pick your battles. How important is it to take meds on time vs. quantity of exercise. Whereas when to stop driving due to safety is something that is non-negotiable.
Be sure to approach a difficult topic when both of you are rested, hydrated and fed. You may need to drop the conversation and revisit it several times before the issue will be resolved. Try role playing from the other person’s point of view. It will give you some perspective about the other person’s position. You may need to enlist the help of a counselor.
Care partners wear many hats. Oftentimes caregivers will feel guilty for taking time for themselves, but it is important to embrace that one of those hats is personal time for you and your wellbeing. Build time in your week for self-care and personal time separate from your family member with PD because care partner self-care is crucial for the best care of your family member with PD.
If your family member with PD has speech or voice issues you need to connect with a speech language pathologist. There is a wealth of information, skill, and tools to help with speech and swallowing.
A care partner webinar attendee is no longer intimately in love with her husband, but he is increasingly reliant on her. Elaine advises she should seek counseling to peel back the layers of the onion because there is a lot of history in a long-term marriage. If you didn’t have really open communication before this point, it will be very difficult to work through all the issues without a trained mediator.
When you need more personal time you should have a conversation with your loved one about how you can work together to create that time apart for your best care. It is common for a person with Parkinson’s to become self-absorbed because there is no break from PD for them. It is not intentional or selfish, it is just becoming hyper focused on that which impacts your life every moment. The conversation needs to change from, ‘you need help’ to, ‘I need help from you.’
You can start the conversation by asking your loved one, “What is the most helpful thing I do for you?” Once you know how you are most helping them, you can share what the most helpful thing they do for you. Continue to expand upon that sharing to express your needs gently and develop new routines in which your loved one, is more helpful or helps you find time for yourself.
Gaining some knowledge about the cognitive changes that are common to PD will help you know how to phrase questions to your loved one and communicate with them more effectively.
You can support a friend who is a PD caregiver by meeting them where they are. You need to ensure they know your offer of help is genuine and not a passing, “Let me know if I can help.” Share with your friend that you can’t read their mind and want to know exactly what would be most helpful. You can research in-home care services, motivate them to exercise, arrange for grocery delivery, etc. You can also step in to do something for them. Tune in to comments your friend has made like, “I am so tired of cooking,” then inform them you will be providing dinner every Thursday.
If your loved one is hallucinating remember the experience is very real to your him/her. Sometimes the person who is hallucinating has some insight and you can remind them it is a hallucination, and it will pass. Changing the environment can make it pass sooner so take their arm and lead them from the room or the building. Try engaging their attention in an activity, exercise, a snack, or chore. Inform your medical team when hallucination first occurs because they are often caused by medications. A medication adjustment can minimize or eliminate hallucinations.
Three things care partners can do every day for their own mental health. Self-care is the overarching theme. It can be physical, emotional, spiritual, but it all involves carving out time to make your self-care happen. Putting it on your calendar is the best way to make self-care happen. It doesn’t have to be a long amount of time, but 10 minutes of having a cup of tea with a magazine when you need a break is useful. It is refreshing, re-energizing, and allows you to continue doing what is asked of you. Remember, you can’t pour from an empty cup. Your role as a care partner is similar to any job. You are allowed breaks by law for a reason.
When Parkinson’s care partners were asked how their loved one is doing during COVID, most said their loved one is doing as well or better than before COVID. Because they are stuck at home, they are exercising and have the assistance of the care partner at all times.
When asked how they are doing as Parkinson’s care partners during COVID, most said they are not doing as well as before. They don’t have opportunities to leave the house and get as much personal time as before. Since they are home more, they are more available for their loved one and as such are more put upon. This is why self-care must be seen as a priority for care partners more than any time before.