Expert Patricia Smith offers a caregiver stress-relieving advice as she tries to cope with her daughter’s disability.
QUESTION: My daughter has had a double lung transplant. Her lungs are great, but she also had a stroke that affected her speech. Also, her attitude has changed completely. She will not exercise or eat right. She spends a lot of time in bed and sleeps. She doesn’t want anyone telling her what to do. If she doesn’t start eating, they will put in a feeding tube. I believe in healing. I know God wants her healthy and well. I also know I have a role to play in this and I don’t want to get it wrong at her expense. She is a fighter but seems to have just quit. I feel my hands are tied. Do you have any advice for me?—Nancy
ANSWER: Both you and your daughter have weathered a very difficult crisis. Often, after all of the medical procedures are completed, it appears the worst is over. Unfortunately, in many cases, the most heart-wrenching tasks still lie ahead.
First of all, it is important to check in with your daughter’s medical professionals and assess if she is experiencing debilitating depression. Her body, mind and spirit have survived a fair amount of trauma and need time to repair and heal. As her caregiver, your hands are never tied. Assess what you can do to help, such as making sure her immediate medical needs are met. Is she taking her medication regularly and in proper doses? Is her environment clean, safe and well-organized? Does she have access to everything she needs, such as fresh water and easy access to a restroom?
Once her basic needs are met, you can then tackle some of the tougher tasks. Helping her to understand the need for proper nourishment can present a challenge. Forcing her to eat may solve the problem in the short term, but you require a long-term solution as healthy food choices will help to heal her body and spirit. Start the process by thinking of the two of you as a team. You are traveling together on her path to wellness. This dictates that you discuss everything with your daughter and allow her to lead the way. Being respectful of her choices is a must. If at any time you do not know her choice, ask. The most important thing a caregiver can do to promote healing is to allow those we serve to remain as independent as possible, for as long as possible. We only need to take control when someone in our care is in immediate physical or mental danger.
When communicating concerns to a physician, nurse, physical therapist, nutritionist or other healthcare professional. it is imperative to gather as much information as possible so a successful assessment can be made. There is help in this area, such as Cheryl Carmichael’s excellent book Dare to Care—Caring for our Elders, available on Amazon.com. While her book is geared toward elder care, the checklists and other helpful hints offer a wide range of useful tips in caring for all ages.
Healing is possible, but more time is required. Give both your daughter and yourself permission to “stay in the moment” and allow for the gift of healing to take hold. Monitor her actions and behaviors, and call on help, if necessary.
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Patricia Smith is a certified Compassion Fatigue Specialist with 20 years of training experience. As founder of the Compassion Fatigue Awareness Project© (www.compassionfatigue.org), the outreach division of Healthy Caregiving, LLC, she writes, speaks and facilities workshops nationwide in service of those who care for others. She has authored several books including To Weep for a Stranger: Compassion Fatigue in Caregiving, which is available at www.healthycaregiving.comor Amazon.com.