Rob Cares – a virtual place caring for caregivers – defines a caregiver as typically a family member, or friend who willingly sacrifices time, energy and, in some cases, their entire being to tend to the needs of a loved one. A caregiver is one who is prepared to be with the patient day and night, through thick and thin, providing anything and everything their care recipient needs.
I spent nearly 30 years living in different spots around the country, first as an active duty member and then as a military spouse. I had no intention of settling back near my parents. We enjoyed their visits throughout the years but they were content living in the northeast and we were content living in the south. Then, came the call. Mom had fallen down the stairs and suffered a pelvic fracture (then, she fell again and suffered back-to-back broken hips a year later). My sisters were desperate for better care; Dad could no longer stay afloat with her at home and the alternatives were to be desired. Alzheimer’s was accelerating and consuming their emotional, physical, and financial wherewithal. Fast forwarding two years, we’ve now settled in for the long-haul. My parents live nearby but separately due to their care needs; certainly not ideal for a 63-year marriage. For the most part, I’ve fulfilled Rob Cares’ definition of a caregiver. I have also become painfully aware of what caregivers are not.
1. You are not perfect. “Self-criticism will always be a part of daily life; it’s how you learn and also how you motivate yourself to do better,” says award-winning PTSD blogger and author Michele Rosenthal. Although most of us are aware of our faults, there’s a sticky point between acknowledgment and acceptance. To grow and move forward, we have to occasionally fail. It is in the failing moments that we grasp humility, grace and mercy. Embracing such healing gifts can prove rather challenging though. This past week, I had the joy of engaging 5th graders in one of our charitable events. They colored stick-characters and one student added a flower and a comment to her sheet: “You don’t have to be perfect.” Her words struck me. Was she simply insightful .. or struggling at that sticky point? Don’t get stuck. It’s okay. It’s normal. You are not perfect.
2. You are not a warehouse. When emotions run too high for too long, stress can warehouse itself in our brain, deep in our muscles and even inside our cells. Stress saturation can lead to a loss or reduction of cell regulation, transforming proto-oncogenes (the original form of DNA) into oncogenes (mutated DNA); that’s like activating cancer’s potential. Our bodies may rebel on us in other ways when stress builds. Coping tips when mom has cancer include a timed “crying session” to let go of worry and stress. That practical tip applies to other difficult journeys too. Our body’s defenses are replenished and our minds restored when we regularly clean out the warehouse. Let go of hurt and you make more room for hope. You are not a warehouse.
3. You are not an army of one. I wrote an “army of one” article for a Common Sense Caregiving forum. The responsibilities are rarely accomplished in fast-paced fashion. From the daily tasks to the journey itself, time and energy are exhausted over and over again. I knew that going in and still I was caught by surprise when my husband, my primary back-up, had a serious heart incident. Then, my alternate back-up caregiver’s own mother fell ill. I learned the value of having a back-up of the back-up of the back-up! Because I had connected, ahead of time, an army of many saw us through. From the moment my mother entered the long-term care center, I began forging relationships by becoming part of her care-team there. I routinely reach out to friends and family for prayer and logistical support. I volunteer to help others in the Alzheimer’s journey by facilitating memory cafes. Then, when resilience falters – which it will – my relationships became a saving grace. Don’t isolate yourself; there will come a day when you’ll need an army of many. You are not an army of one.
4. You are not the great pretender. There are places and people where venting is safe and constructive. Facebook may be a good place to petition prayers from family and friends and share inspiring photos. Yet, it’s probably not the go-to place if you’re edging on burn-out or need to hear from others in your shoes. There’s a camaraderie among Alzheimer’s support groups, caregiver seminars, memory cafes, and online groups. You are best understood by those immersed in the day-to-day like yourself. Caregiving for a loved one with Alzheimer’s has rewarding moments laced between the inherent stressful ones. Connect with people and places where you can be honest and forthright. Everything is NOT fine and you are not the great pretender.
5. You are not just a caregiver. It is an all-consuming world at times. You can combat isolation by taking a constructive look at who you are outside of being a caregiver. Whether you’re one of the nearly 60 percent of caregivers working outside the home or one of the growing numbers caring for a parent with Alzheimer’s 24/7, other parts of you can too easily fall by the wayside. Regularly engage and celebrate who else you are … make it a priority like any other appointment on the calendar. Take time to be present as a spouse, mother, sister, daughter, friend – connect over something other than caregiving – they need it as much as you do. Play a board game, immerse in a 1960’s potluck party, sit outside after dark and count the stars, engage in water sports, imagine a different time … make a bucket list. When you lose your loved one, your connection to others shouldn’t be lost too. You are not just a caregiver.