Caregiving can take so much of your time and mental energy that it overshadows and changes the relationship you had with your loved one. A relationship with a spouse, based on mutual affection and interests, can feel as if there's nothing left but caregiving duties, medication schedules, and doctor visits. Or you may be caring for a parent to whom you looked for guidance. But after years of caregiving, you find that roles have reversed and your parent becomes dependent on you despite needs you may still have of them.
At the not-for-profit Visiting Nurse Service of New York, home care nurses help educate family caregivers about the importance of self-care and finding personal balance in order to coordinate the best care for the patients they serve. With National Nurses Week just ahead, I am hoping the following will inspire family caregivers to set healthy boundaries, ask for help from the experts around them, and learn to better care for themselves.
Kathleen* has been providing care for her father James for many years. James has had progressively worsening kidney failure for over 40 years and in 2009 he started hemodialysis at home. Home hemodialysis requires a great deal of assistance and Kathleen, who is also a nurse, felt increasing pressure to be involved. Kathleen felt a responsibility to help her father and be there for her family, but at one point she realized she had to separate herself for her own emotional health.
When did you start being a caregiver to your father?
My father has had a progressive form of kidney failure since the 1970s. When I was a child it was controlled by medication and diet but he eventually needed dialysis. My father had always managed his illness on his own but as his health declined his needs increased. In 2004 and 2008 he had prolonged periods of hospitalization and when he came home I provided his primary care.
In order to continue to manage his own care, he made the decision to start home hemodialysis (not to be confused with peritoneal dialysis) in 2009. However, home hemodialysis is a big commitment and you can't do it alone. It requires help from a partner 4 hours per day, 5 days per week. When he first started, I was his primary partner.
Did you know how to provide this care?
This kind of caregiving is a big responsibility. Caregivers typically help with inserting/pulling needles, setup and breakdown, monitoring the machine's settings, and recording blood pressure readings. You have to be able to manage an emergency and troubleshoot alarms on the machine. My dad has an excellent understanding of how the machine works and manages setup and breakdown on his own.
I am a nurse and my medical training certainly helps, but it's still difficult and scary to perform a life sustaining medical treatment in the home without the benefits of a controlled health care setting.
How has being a caregiver for your father been difficult?
First was the sheer amount of time I've devoted, at times giving up other things in my life, such as hobbies and time with friends. I knew I needed to take time for myself but when I tried to set boundaries guilt set in, and I became consumed with the thought that I wasn't doing enough.
The worst part was that my relationship with my father seemed to revolve around his illness and caregiving and I mourned the person I had turned to for protection and guidance.
What prompted you to take action for yourself?
Unfortunately, my mental health was suffering. Between helping my dad and working full-time I was no longer enjoying life. I spoke with a caregiver coach who helped me realize that I could help my father yet still maintain some life of my own. My mother has been a huge source of support to my father and to me as well. She's the one who helps him the most now.
How did your father react to your pulling back?
He has always felt guilty about the burden his illness placed on our family, but when I pulled back it was clear he felt as if I didn't want to care for him. Unfortunately, we didn't have open discussions about this, just arguments about unimportant things and my visits became a time of conflict. We had to work to reach a middle ground -- where he knows I love him and will care for him whenever possible, but I have my own needs too.
Have you found balance now?
Balance is fluid, not static. It's best found in a family when each person's needs are taken into account. We're learning to find ways to balance together. My husband and I now live in the apartment behind my parents' home. I can be there when they need me, but they've learned to not call on me every day. It felt like a real victory the other day when I went over just to chat and my dad made me a plate of spaghetti. It was such a simple yet loving gesture. It was therapeutic for us both; it felt normal.
Has being a caregiver positively affected your life?
I believe it has made me a more compassionate and empathetic nurse. I understand more of what my patients and their families go through because we have a shared experience. It's made me stronger as a person, not only because of the caregiving responsibilities I had to meet, but also because I had to learn to take care of myself and set boundaries.
- First, talk to someone (such as a home care nurse, therapist, friend, or relative) who can help you work out what limits you need to set on caregiving so that you can still find time to live the life you want to live.
- Communicate openly with your loved one about what you are able to do and not able to do. This requires being honest with yourself first and accepting your own limits.
- Find ways to support your spiritual and emotional health: pray, do yoga, express yourself creatively.
- Don't wait until you are having emotional breakdowns to make changes. Small changes can have big effects and even an hour to yourself can help you cope.
- Maintain your relationship with your family member apart from illness and caregiving. Do things together: go to a show, share a simple meal, or just talk. Do the things you used to do before caregiving was part of the picture.
- Know that no one can do it all. Take advantage of online newsletters and resources for caregivers, and reach out to outside services and other family members to share responsibilities.
* name changed to protect the family's privacy