5 Tips in Caregiving: When a Loved One Refuses Care
These are some of the biggest challenges I have faced as a doctor and caregiver, so I thought perhaps these pearls would help with the frustration many of us struggle with on a daily basis. It can be exhausting caring for someone, especially long-term. It can be even worse if the person you are trying to help refuses any type of care, from medical treatment to assistance in the home, despite obvious challenges.
What is the answer?
Tip 1: Keep emotions under control
This is hard to do especially when you're emotionally exhausted; especially for those of us who try to juggle family, work, and even own illness. Getting mad, blaming others, or making the patient feel guilty will not ameliorate the situation. Don’t take things personally! If you feel like emotions are running rampant - walk away to cool down. Then discuss the problem calmly.
Tip 2: Ask why your loved one is refusing care
I have learned that most times there is a very logical explanation for the irrational behavior and refusal of care. These typically arise from fear of illness, losing independence, financial trepidation, or uncertainty of future. At first glance, the patient's fears may seem unfounded. But, unless deemed incompetent to make their own decisions by a judge, each person has a right to refuse care. The key is to listen carefully to patient’s wishes. Our job is to put align their decisions with their expectation. Do they mesh? For instance, they want to remain independent, but are falling all the time and refuse therapy and/or medications. The first is incompatible with the second.
Tip 3: Give your loved one options
Ask them to help come up with a solution. In a patient who is falling, ask what they think can be done to prevent falling? Do they want to learn to walk safely, be in a wheelchair, or end up in the hospital with a broken hip? But, highlight the positives; if you can walk without falling you can continue living alone rather than a nursing home.
Tip 4: Focus on the positives
We not only want to provide care but we want to keep them safe and allow them dignity and choice in their life journey. Focus on things they are good at or love doing. Stress that by accepting care or treatment they might live pain-free, enjoy their life more, and be able to do those things which they love. For instance, if a patient loves to bake but is unable to do so because of tremors, then say that medications will help them bake again. (Rather than focusing on possible side effects).
Tip 5: Ask for help and support
This is the fastest way to getting burned out. Feel free to delegate duties to other siblings, family members, and nurse aids to help ease the burden as a caregiver but also for the patient. Get social workers, financial planners, and counselors as well so that you and your loved one can enjoy quality time. Despite the fact that it was very stressful caring for my grandmother and dad, the outside support allowed me time to enjoy the little things that really mattered.
Do you find music to be an important factor in your life with PD?