In July, PMD Alliance held a webinar during which the speaker, social worker Erin Cecchi, focused on how important it is for care partners to ask for help. The speaker addressed barriers to asking help, the strain of care on care partners, the risk of care partners’ own declining health, how to build a support network, and whom to ask before you “hit the wall.” Erin said that there is a wealth of information available by speaking to other caregivers who can provide many ideas on caring for your loved one with Parkinson’s disease (PD) as well as enjoying your own life. As care partners can experience high levels of physical and mental stress, Erin noted that caregivers taking care of their own mental health needs is just as important as taking care of their physical health.
The webinar was recorded, and is accessible on YouTube.
The speaker suggests caregivers contact the local area agency on aging for low-cost or free resources, such as Meals on Wheels. In California, you can find the nearest area agency on aging here.
Outside of California, you can find the nearest area agency on aging here.
For more resources for caregivers, please see this Stanford Parkinson’s Community Outreach webpages:
The speaker encouraged caregivers to attend caregiver-only support groups to understand how other caregivers cope. If you live in Northern California, check out the Stanford Parkinson’s Community Outreach webpage on PD caregiver-only support groups. Some of these groups are meeting in-person or virtually.
See my notes below for the webinar.
– Sheela Sakariya
“The Art & Practice of Planning [for Caregivers]: Asking for Help” – Webinar Notes
Webinar Host: PMD Alliance
Webinar Date: July 21, 2021
Speaker: Erin Cecchi, LCSW, Parkinson’s Disease and Movement Disorder Center, Northwestern Medicine, Chicago, IL
Summary by: Sheela Sakariya, Stanford Parkinson’s Community Outreach
Care partner’s role
When a person is diagnosed with Parkinson’s disease (PD), someone who is close to them — whether a spouse, child, parent or friend — usually becomes their primary care partner. Care partners take on many responsibilities, from accompanying a loved one to doctor appointments to managing more household responsibilities. For the most part, care partners do not need special medical training. What’s important is establishing a partnership — a mutual understanding of what kind of help with daily tasks and emotional support the person with Parkinson’s wants and needs as the disease impacts your routines and lives. It’s essential, too, for care partners to take care of themselves. Parkinson’s progresses slowly, and the role of the care partner can last for decades. Care partners need to take time out to renew their energy and stay healthy.
Barriers for caregivers in asking for help
Most of us feel stressed and overwhelmed from time to time and realize when it’s time to ask for help but actually doing it is a much harder feat. In general, care partners provide an average of 45 hours a week of care and 81% feel guilty asking for help.
There are a lot of reasons that caregivers do not ask for help. Some caregivers do not need help while others do not know how to ask for help. Others have this preconceived notion that getting help may make things worse for them. Or, another reason is that caregivers do not want to invest the time in teaching the person what to do, and explain where help is needed. Additionally, caregivers are oftentimes embarrassed to ask for help multiple times, as well as questions arise such as will people actually help even if you ask? Many times people believe it’s too much effort/work to ask for help and do not want to impose on others. Hence, caregivers often decide they will do everything alone and that’s the only way to live their life.
Covid and cost
Recently, Covid-19 has been another major reason that caregivers hesitate to ask for help. In such unprecedented times, safety is a very large issue and a huge responsibility. A lot of times, individuals are willing to do everything on their own, as they do not wish to risk their safety as well as their loved ones with PD during the Covid-19 pandemic. Another challenge during Covid-19 was everything was shut down, including facilities that may provide some relief were also not available due to fear of infection.
Cost is another major concern that is cited for not getting help. Given that cost has gone up universally during the pandemic, cost of help has also increased and not all caregivers can afford the help that is needed.
Guilt is a feeling, real or perceived that we have done something wrong. It’s also tied in with shame. As caregivers, they need to name this feeling and recognize it. The next thing is to do something about it – guilt is something we do not want to feel. It’s a negative emotion, and it will spill over if you ignore that emotion. Be compassionate with yourself. Guilt can be caused due to an unmet need or expectation for yourself. Caregivers can feel guilt with that nagging feeling that a loved one with PD is not being cared for like they should be. The caregiver can feel guilty asking for outside assistance or help.
Caregivers are also fearful of asking for help because they might be concerned about how others may judge them for not doing their job. Another fear that is too common among caregivers is they are worried that outside assistance will not provide the same level of care as they might. Caregivers are often worried that they will hurt their loved ones’ (with PD) feelings if they bring someone else to assist in caregiving duties.
Rigidity in thought and words
Caregivers often find themselves trapped within their own minds and emotions. For example, they may make statements which include the words “should,” “ought,” “always,” and “must,” which binds them into this feeling of having no choice. These types of words and thoughts also cause an increased level of stress and drain their mental health.
As PD progresses, your loved one needs more help, patience, and kindness. That pressure builds on the caregiver. Denial can come in minimization of stress about how stressed the caregiver really is or how much help is really needed. Denial is also about recognizing how much the scale is tipping on you as a caregiver as you keep taking more and more responsibility.
Tips on asking for help
Having the conversation with loved one
Talk to your loved one and tell them that as a caregiver “I need help.” Most of the time, loved ones will understand and will be more than willing to work with outside assistance. Also, it’s important to ensure the conversation does not stray into the loved one feeling like a burden, but more about taking care of the physical and mental needs of the caregiver. These are not easy conversations to have, and there may be a myriad of reasons to not ask for help. But it’s extremely important to have this conversation with your loved one and acknowledge that as a caregiver you are a human being, and need to have additional help.
Building a team
Caregivers can ask for help and help build a team of individuals to care for the loved one. This may include a therapist, a companion, or a singing teacher. Also, caregivers should tap into informal support networks that do not need to be paid including family members, friends, faith-based groups, support groups, high school students, and book clubs. Many times, the doctor’s office provides care coordination and support, so please speak to your loved one’s health care provider. Additionally, there are in-home services and technology-based services that are free or private pay.
[Editor’s Note: We’d be interested in knowing what Northern California doctor’s offices provide care coordination services! This has not been our experience.]
Area agency on aging
These agencies can provide a list of resources that are available in the area for cost and for free. This is a great way to access community support and set up a team of community members who are willing to help and assist you as a caregiver.
Other care partners
Speaking to other care partners will help understand and give ideas about what services they have utilized for their loved ones and if you can employ similar services. Join care partner support groups which help you not only gain ideas about outside assistance and how/when to use it, but also get tips on how to deal with some PD issues (like incontinence, swallowing, exercise, etc.). There is a wealth of information that other care partners have that should be utilized to relieve their own mental and physical stress as well as plan for loved one’s care.
Caring for yourself
Caring for a person with a chronic illness can be exhausting. It can also be a source of pride, and some care partners feel guilty about taking any time off. But taking care of yourself will help you to be a better care partner. Put together a list of friends and family members whom you can call upon just to speak with them. Don’t forget your own interests and your life outside of Parkinson’s disease. Schedule regular social activities and time for yourself. Go out with friends, enjoy a physical activity independently or take classes that interest you. Take care of your own health. Stay up to date with your own medical appointments and health care needs. Remember to eat well and to get enough sleep.
In general, there is a lot of negativity associated with asking for help. Instead, it’s best to stop and think about what your role is as a caregiver, and how much of it can be outsourced to prevent burnout. Additionally, having that conversation with your loved one about when to ask for help and planning it out will reduce stress on the caregiver and keep their mental health stable.