Caring For Someone with Parkinson’s: Care Partners
By Sherri Bickley, MSW, M.Th., Vice-President of Clinical Support Services, Crossroads Hospice and Palliative Care and Owner/Head Coach, Rock Steady Boxing-Wasatch Front.
The news of a diagnosis of a serious illness for a loved one brings with it a real sense of loss and emotional pain. Plans and dreams that have to be altered or forgotten, the loss or shift of established roles within the family, possible loss of income, and fear of the unknown are all concerns that can bring a variety of emotions. As a Medical Social Worker and Rock Steady Boxing Coach, and having been the caregiver for my own mother during an illness, I am acutely aware of the challenges faced by these very important individuals. I am also aware that they often push their own needs aside in a selfless effort to be more present for their loved ones. There are some basics of self-care that are important for all care partners to remember along this journey.
But being a care partner doesn’t have to be a lonely job, and it shouldn’t be. Without the proper outlets or support, stress from being a care partner can take a toll. Rock Steady Boxing shares ways you can relieve your stress and avoid straining your relationship with your loved one diagnosed with Parkinson’s Disease or another life-altering illness.
Issues You May Experience as a Parkinson’s Care Partner
Caregiving for a loved one with a serious and chronic illness, such as Parkinson’s disease, is among the most stressful tasks that many people will face throughout their lives. The strain can be felt emotionally, physically, cognitively, and socially. Often, the care partner is too busy with the actual tasks associated with the role to bother caring for themselves. This can lead to burnout and illness on the part of the care partner; which then renders them unable to care well for their loved one. It can become a vicious circle.
News of this illness, along with the time it takes to care for someone, can put a lot of strain on family members and caregivers. It’s important to remember to take care of yourself, both emotionally and physically. These are some common issues caregivers experience that are important to address.
“Anticipatory Grief” is grief felt by those who either have or care for those with, a chronic or terminal illness, before the loss of the person has occurred. The feelings related to traditional grief, such as anger, loss, denial, fear, sadness, and others are experienced in a very real way. This can take some people off guard, as there has not been the traditional type of loss that usually triggers a grief response, such as a death.
These feelings are all normal and can be very powerful. It is important to recognize them for what they are, discuss them and not try to ignore or downplay the reality of them. Care partners can seek support from friends and family, disease-specific or caregiver support groups, and mental health professionals if the Anticipatory Grief is severe.
Stress can bring serious health issues when not dealt with appropriately. A depleted immune system can lead to frequent illnesses or infections. Heart or blood pressure issues can develop, along with gastrointestinal issues at times, and sleep disturbances can occur. A disregard for one’s own health maintenance, such as diet and exercise, can be a factor when a care partner is overwhelmed and entrenched in the care of another.
It is imperative to pay attention to the effects that caregiver stress may have on your body. Stay consistent with routine medical care. Finding time to exercise and eat well is important. With Parkinson’s, for which exercise is key to living well, the care partner could join in the exercise regime held by their loved one. Exercise helps relieve stress and can also boost one’s mood. Simple activities to relax and unwind are also helpful. Keeping a routine of yoga, getting a weekly massage, a monthly card game, and other activities are important to self-care.
Caregiver burnout is a very real symptom of stress and Anticipatory Grief that can affect your mental health in many ways. Common signs often include forgetfulness and confusion. This can be very alarming when it is not recognized as a possible reaction to stress but is a sign that the care partner may need to invest some time in their own health and well-being.
It’s important to find a balance between being a Parkinson’s Caregiver and caring for your own well-being. Burnout affects you more than you probably realize. It’s not selfish to feel tired or sick of being the only person that’s taking care of someone, but if you are able to find a support system of people that can help you take care of yourself as well as your loved one with Parkinson’s, then the effects of burnout won’t be as severe.
How Care Partners Can Help Themselves
Being a care partner can feel like the loneliest job in the world at times. People often find themselves lacking the social support they need. The rapid pace of medical appointments, figuring out medications, adjusting other familial roles and other events can leave individuals with little time to seek important social connections with others that share their experience.
This progressive disease may change your loved one’s abilities over time. As the disease progresses, driving restrictions or safety concerns make it difficult for the care partner to leave home alone to be with friends and maintain social interactions. I often hear care partners say they don’t want to be a bother to anyone so they don’t reach out for help. At the same time, I hear from others involved in their lives that they wish they could do more to help the situation.
Care partners need to feel empowered to share their struggles and needs with others. Reaching out for help is not a sign of weakness or a bother to others. It is necessary for good self-care. Be specific in your requests for help with caregiving responsibilities. Assign family members to help with some of the driving duties, a shopping trip, some respite so you can have a little time alone, or simply someone to vacuum and dust once a week.
It is also important that the care partner realize that they are not alone in this role. There are various support groups and social media forums that can help build important social support. Oftentimes, communities have disease-specific organizations that offer opportunities to connect with others.
One of my favorite things about Rock Steady Boxing, as a coach, is watching our Cornermen and Corner-chicks care for one another, share ideas and support each other through struggles.
These groups provide a range of options for caregiver education, support, and networking.
AARP Caregiving Resource Center: 877-333-588
ARCH National Respite Network and Resource Center: 919-490-5577
Caregiver Action Network: 202-454-3970; Check out the “Family Caregiver Toolbox”
Family Caregiver Alliance: 800-445-8106
Family Caregiver Council: http://familycaregivercouncil.com/
Lotsa Helping Hands: http://lotsahelpinghands.com/
National Adult Day Services Association: 877-745-1440
National Alliance for Caregiving: 301-718-8444
Well Spouse Association: 800-838-0879
Promote Healthy Living with Rock Steady Boxing
Exercise is not only important for a person with Parkinson’s, but for their care partners as well. We encourage care partners to be a part of the exercise program Rock Steady Boxing provides, if not for the exercise, but to connect with other care partners to help lessen the burden of caring for someone alone. Find a Rock Steady Boxing class near you to help connect you and your loved one to a community of care partners and help lessen the effects of Parkinson’s Disease for your loved one.