The ER doctor asked Tilly, a 96-year-old woman, what she wanted to do? She had COPD and difficulty breathing. There was no evidence of pneumonia on her chest x-ray and her lab studies were unremarkable. Did Tilly feel comfortable going home or did she prefer to stay in the hospital?
Carol, her daughter, gave her mother a chance to respond. Tilly thought she might like to go home and Carol rolled her eyes. Carol pushed the issue by stating, “Do you want to die?” Tilly quickly came to her senses after she angered her daughter, acting as her caregiver. Tilly promptly agreed to stay in the hospital.
What was Carol’s advance care plan for her mother? Did she intend to lighten up at the end or to create hardship for her mother? Was Tilly near the end of life? If Tilly wanted to die, could she do so without shame? Who was responsible for this squabble between the patient and her caregiver? Should Carol have anticipated this upset and been more sensitive to Tilly’s wishes?
Patients rarely know what they want, particularly, when it comes to dying. Family caregivers rely on their patients to tell them what they want. Starting in 2017, caregivers need to be adept at advance care planning. No longer can they set themselves up for failure and grief. Healthcare providers need a New Year’s resolution to support caregivers. My “Blog Series for the Seasons of Caregiving” is dedicated to discussing advance care planning throughout 2017.
The nature of planting a seed offers three tips for caregivers:
As a caregiver, you become a steward for the life of another. You often manage their healthcare, finances, and social activities. You stake a personal claim on your loved one’s life. Your loved one becomes your patient, and your patient becomes the most important aspect of your life, which is likely to become all too time consuming.
Family caregivers often have no idea of what they are getting into. Your duty as a caregiver tend to evolve from supporting your patient to controlling them. You might forget that the patient’s self-determination is the only advance directive needed. By listening more and demanding less, you learn how to let go, allowing nature to take its course.
The nature of famil caregiving, like gardening, is you cannot let it go unattended. Gardening is often thought of as a side job – you’ll get to it when you can. Eventually, you realize that neglecting the situation makes it worse and harder to manage. You might quickly realize that you don’t have the tools or skills to maintain a garden. The inclination is to hire someone to do the work, but that often feels self-defeating.
Your garden, like your life, is your domain. Your family members creep in and out of your garden like thistle. Thistle is a beautiful type of daisy. It has prickly stems and leaves with rounded heads of purple flowers. It is the symbol or devotion, durability, and determination. These characteristics strengthen family ties and entice you as a caregiver. Yet, thistle can choke off other aspects of your garden and thus your life.
You, as a caregiver, rarely have time for anything and everything is on your to-do list. No one struggles more than caregivers. It is often futile for others to know what lies in your heart and mind. Caregivers often express, “You don’t know what I am going through.” This reflects the weight upon your neck, back, and shoulders. You are right. More emphasis is placed on your patient’s well-being, and not enough attention is given to your sanity.
Through containing the situation to a particular season, your purpose becomes more certain. Every patient has a time to live, to survive, and to die. Your contribution to your patient’s life has to respect each of these times with different care plans. In the summer, you care for yourself and others differently than in the winter.
Insanity is doing the same thing over and over again and expecting different results. Caregivers drive themselves insane by expecting a terminal illness to get better. If you believe all patients need the same treatment, you have little regard for the seasons of life. Any advance care plan has to honor the season of life.
The New Year is the beginning of another journey. An inaugural opportunity to plant an intention and watch it grow through the year. In 2017, follow this “Blog Series for the Seasons of Caregiving.” Learn how to better nurture yourself as you care for others.