Keeping a Part of Myself Just for Me

Keeping a Part of Myself Just for Me

May 27, 2020

As a child, Jill became her mother’s primary caregiver after a stroke paralyzed her. As she got older, she also cared for her father and older sister. She shares how her role as a caregiver changed the dynamics in some relationships, how she learned to be an effective advocate, and the importance of being organized and kind to yourself. This is Jill’s story.

As told to Open Caregiving and lightly edited to enhance readability while preserving the author’s voice.

Getting to know the caregiver

Hi, my name is Jill. I’m a mid-50s, early Gen X, woman from California. I was a caregiver for my parents and my older sister.

What did your life look like when you became a caregiver?

I was the youngest child to older parents. We lived in the Midwest. I cared for my mother, and cared for my father a little initially, for about ten years. I looked after my mother again and oversaw her care when she was in a skilled nursing home in California (we moved her because some family members had relocated). During that time, I coordinated her care and managed her finances.

I became a caregiver to my sister when she became ill with cancer. I was working full time. My supervisors were unbelievably supportive and gave me flexibility with remote work far beyond what I would have expected. I commuted 40 minutes from my house to my sister’s house whenever she needed me and I increased my time there as her cancer progressed. Our mother lived about 25 minutes in the opposite direction. I also kept my obligations to have substantial visits with her twice a week.

Who did you care for and what prompted their need for care?

I cared for three people over the course of my caregiving.

My mother was morbidly obese and became paralyzed by a stroke. We had a very difficult relationship for many years. For whatever reason, I became her primary caregiver after her stroke. Although my parents were together and older siblings were still at home, they expected me to help my mother in just about every way. She was very angry and emotionally immature at that point and saw to it that her needs came first. She was prone to tantrums.

My father was a very good, principled person in general, although emotionally stoic. He had a white-collar job, and we were comfortable financially. He had a medical condition that affected his motor coordination skills. Unlike my mother, he was always reluctant to receive help. He had the personal dignity of trying his best to take care of himself and accepted his own health burdens with an unbelievable amount of grace.

My older sister was always the leader in the family. She was very serious, career driven, and successful. She was unmarried, and although she had boyfriends, she lived alone most of the time. She could have a temper, but I was in awe of her. She was generous and fun loving and was my biggest cheerleader. She was my best friend. I still can’t believe she is gone. She had a series of seizures, which led to her cancer diagnosis. Eventually she experienced paralysis and cognitive deterioration. Like our father, she handled these heartbreaking losses with an incredibly inspiring amount of grace. Literally, I never heard her complain even once.

What was a memorable learning?

I learned to always be the adult in the room, even if I was the only child present. I had to be hypervigilant and proactive in attending to the needs of others. Unfortunately, I also realized that a normal adolescence was out of the question for me. My own needs and goals didn’t matter. As a result, I didn’t fully overcome these limiting expectations and didn’t reach my potential in life.

Also, I kept a part of myself just for me. Some might phrase this as, “Do not let everyone else sip from your cup so that there is nothing left for you.”

What surprised you about caregiving?

With my mother, it astounded me that no one was expected to help me. The only exceptions were when my father got off work and when a housekeeper came by once a month. I wasn’t expecting to experience back pain from dressing and toileting my mother and pushing her in a wheelchair. My mother was an excellent cook and gave me step-by-step instructions from the other room while I cooked in the kitchen. I came away from home with very solid cooking skills.

In the cases of my father and sister, the grace they exhibited in the face of their illnesses surprised me.

In my sister’s case, the many skills I learned while taking care of our parents came into play while looking after my sister. Taking care of someone with a terminal illness is very different from caring for someone who has a somewhat stable chronic condition. The instructions provided by the hospice and equipment rental staff were lacking. Fortunately, I knew how to put pedals on a wheelchair and knew that removing them before placing the chair in the car’s trunk makes for a far easier process. I’m not sure how many others know tips like this when faced with the tasks of home health care for the first time.

How do you try to balance being a caregiver while caring for yourself?

Sometimes I would tell myself, “I’m going on strike for five minutes.” I would have to call my bluff if my family member needed me, but I could mostly give myself a little break during that time.

I’d get massages when my back was sore or when I became too tense. I’d always keep a small treat for myself when I was off from caregiving for the evening, such as blasting a song I wanted to listen to during the drive home, or calling one of my friends who had a good sense of humor. Taking walks were a great source of consolation for years. I’d focus on nature for at least half of the walk and maybe call a friend. Journaling first thing in the morning helped to clear my head, too.

Taking care of one’s health and taking preventative measures, such as diet and exercise, should be of paramount importance. Each day, I stayed mindful of the basics: get enough rest, eat healthy food, and get some exercise. I would meal prep and freeze portions so that when I came home exhausted, I could easily reheat it.

Even though I have been rather blunt in recounting the negatives I experienced as a caregiver, one thing that really got me through was having a good attitude towards myself. I believe that positive self-talk can be very nurturing. When my sister was in the last weeks of her life, I had a family member pull me aside and say to me, “Just hang in there.” This is such a simple phrase, but I repeated it often to myself. I reminded myself that I did the very best I could. Replaying words of positive recognition from those I took care of proved to be very uplifting.

What resource would you recommend to caregivers?

Caregiving is so multifaceted and depends on the circumstances.

If the caregiver is a child, as I was, I would suggest reaching out to a school counselor or other trusted adult to confide in. I had limited success in that, even though I tried it.

If the caregiver is caring for someone who has a stable condition, like paralysis after a stroke, I would recommend searching on YouTube for basic caregiver tips. You’ll learn tips like putting the patient’s weaker arm in the sleeve first when helping them get a sweater on, or changing a bed sheet by getting the patient on their side and rolling a sheet under them. If funds permit, I also recommend getting an hourly caregiver from an agency for a few sessions so you can learn from them.

If the caregiver is looking for skilled nursing facilities, do thorough research in your area. The highest rated or newest nursing home might not be the best. Narrow the search to three or four possibilities based on need and distance.

Go unannounced to each nursing home and walk in as if you’re visiting someone. Talk to families or lucid residents in the common areas and ask them what they like or don’t like about it. Besides questions about the living conditions and quality of care, I directly ask, “Should I consider placing my mother here? Are you happy here?”

Once you’ve narrowed it down, call the nursing home back and ask for an appointment. During the appointment, ask a few nurses or nurses’ aides about the staff turnover and if they like working there (do this out of ear shot of administrative staff). Bring your loved one to the nursing home before you both make your decision, if possible. In California, CANHR (California Advocates for Nursing Home Reform) is a wonderful resource.

When you have placed your loved one in the nursing home, clear the calendar and be very visible during the first week or so. Pop in during each shift and stay at least an hour or two. Get to know the names of nursing and office staff and be friendly. Bring donuts and put them at the nurse’s station. Show them you care, that you’re involved and observant. If you’re invested from the beginning, they’ll also be invested in your loved one’s care (if it’s a good nursing home).

If the caregiver has a patient recommended for hospice, it’s also important to do your research about that hospice. Work with the patient’s doctor or nurse practitioner and see if they recommend the hospice or know anyone there. You’re not locked into the hospice they select for your loved one.

Be present for the initial appointments for each of the hospice care staff including the hospice nurse, bath care aide, chaplain, and others. Firmly, but politely, speak up if you’re unhappy about aspects of care or if you don’t fully understand what they’re saying.

The chaplain will usually be clergy, but will provide nondenominational counseling and advice to you and the patient as part of the hospice services. The chaplain can act as a great liaison and problem solver when there is friction between you and unreasonable family members who don’t understand that the comfort and last wishes of the patient need to be respected. Don’t ask me how I know this!

What advice would you give to caregivers?

Stay as organized as you can. Write everything down immediately on your phone or in a binder with dates and names of those in your conversations.

For each new phone number, I would immediately enter it into my phone by patient name first. For example: “Dad – Dr. Smith / Dentist”. That way, I could scroll to “Dad” and all of his care contacts would be grouped together.

Is there anything else you’d like to share?

Be prepared for changing dynamics in your relationships. Some unlikely people will probably step forward and offer to help. Others that you fully expected to be by your side will turn away from you. Someone’s prior role as a caregiver doesn’t mean that person is compassionate. The unlikely people who offer to help, and follow through for you, are worth their weight in gold.

Finally, you will never regret being kind as long as you can effectively advocate for someone else. The rewards of caregiving can show you the depth of your own capability to love and help another person. Even in my most challenging caregiving relationship, our behavior towards one another developed into respectful, effective communication. I’m humbled by these experiences.

Although my loved ones are no longer with me, I’m consoled by knowing that I did my best for them while they were here.

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