Life in the Corner of a Care Partner
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.
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.
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.
The news of a serious illness 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.
Grief experts have termed the feelings of loss associated with this type of experience “Anticipatory Grief.” This is grief felt by those who either have, or care for those with, a chronic or terminal illness, before loss of the person has occurred. The feelings related with 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.
Another reality for care partners is the physical reaction to caregiving and the stress that accompanies this role. 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. 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 that care partners pay attention to the affects stress may have on their bodies. 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 is important to self-care.
Another thing to be aware of is how the stress of being a care partner can affect one’s cognition. When stress is severe enough or Anticipatory Grief is strong, care partners can experience 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. I remember when my mother was at the worst of her illness, I drove away from my office with a file folder on top of my car not once, but TWICE in a week. I was so affected by the stress of what was happening and my absent-mindedness was a clear indicator that I needed to check my own self-care.
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 doctor’s 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.
There may come a time when driving restrictions or safety concerns make it difficult for the care partner to leave home alone to be with friends and maintain social connections. 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: someone 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 an 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 Cornerchicks care for one another, share ideas and support each other through struggles.
Caring for a loved one is extremely difficult and emotional work. Self-care is imperative. You simply can’t give what you don’t have. Reach out for help. Use humor when you can. Take time for yourself too. Be attentive to your feelings. Don’t dismiss your emotions. Your loved one will thank you as you become an even better care partner by caring for yourself.
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