It was no accident that Gwyn had to be her husband’s caregiver. She was a wellness instructor and understood the value of preventive care. The goal of wellness is to prevent illness. Gwyn had just turned 50-years-old and her husband was diagnosed with multiple myeloma. Gwyn knew the importance of creating balance in her life. But was she prepared for the upset of her husband’s illness? Was her wellness experience key to creating an advance care plan?
Preventive care is necessary for you, as a family caregiver, to guard against burnout and heartache. It’s been said, an ounce of prevention is worth a pound of cure. Meaning – it’s better to be prepared than needing to fix problems later. Having an ounce of prevention is the necessary tool that allows you to survive caregiving and prompts you to do no harm.
In staking out a garden, flags are posted every so often in the yard to mark the spot where a new plant will either flourish or perish. The garden becomes a pin-cushion for your hopes and dreams. By the same token, your patient may feel like a pin cushion when he experiences repeated needle sticks. Your hopes and dreams might appear as inflicting harm to your patient.
3 Preventive care tools can help caregivers do no harm:
A gardening project can get out of hand. You may think you’d like a lot of plants or that mowing a large lawn is not a chore. What if you had to hire someone to keep up your garden? How expensive does this become? There is no such thing as a low-maintenance patient. Caring for your loved one is often manageable at first. Then like a vine, the growing responsibilities begin to creep into every aspect of your life.
Keeping it simple requires that you begin to think in reverse. Breathing tubes and feeding tube need a lot of maintenance. Frequent hospitalization results in burnout. Encouraging others to get better is like beating your head against the wall. It becomes self-defeating.
Tell yourself that your job is not to prevent your loved one from dying. Commit to making life easy for you and your patient. You have the choice to say, “We can either do this the easy way or the hard way.” The hard way means inflicting harm. Oftentimes, for no good reason.
Do you tend to slave away or enjoy life? Saying, “I love what I am doing” often becomes fleeting as the years pass. A true labor of love is giving yourself permission not to do everything or achieve any results. You can just “be me” or “live in the moment” without expectation or judgement.
“Love is patient . . . Love is not easily angered.” When you become angry, you are caring too much. You have reached a boiling point. You need to turn down the heat and allow a cooler head to prevail. Losing your patience might reflect that your patient losing his battle with chronic illness. Learn how to use love to let go of fear and anger.
Allowing nature to take its course is a labor of love. There is strength in being both aggressive and passive. As a caregiver, your work is to find balance between being gung-ho and letting go. This prevents you from losing your sanity and becoming sick yourself.
The value in receiving a gift is you can take it or leave it. Can you think of caregiving as not being important to you? How can you give up being a caregiver when someone is depending on you? In this context, your loved one has become more of a parasite than a person.
Living together is a close physical association can mean that you share a symbiotic relationship. Each person gains some advantage through being together. Viewing one another as a gift, you may appreciate this relationship as a blessing and a curse. Establishing this middle ground upfront may prevent you from feeling like killing each other.
Caregiving is only a gift if you remain indifferent to it, i.e. you can take it or leave it. Remaining indifferent is the path to doing no harm. It’s a passive tool that caregivers rarely use. Guard against staking out the perfect garden. Allow enough room in the space for indifference. You’ll experience serenity as a gift when you allow nature to help fill in the gaps.
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.