Caring for your family after transplant
You have probably noticed a number of changes in family life following your child’s transplant. It will be important to sit down as a family to regularly discuss how everyone is coping. You may find that there are periods when things seem to be going well and you feel like things are “under control.” At other times, you may find that your family is struggling. On top of the responsibility of caring for a child(ren) with a chronic illness, you are likely juggling many other personal and/or professional responsibilities, which can be overwhelming. These feelings are normal, but should not be ignored as they tend to contribute to declines in mental health over the long run. We encourage you to give yourself permission to ask for help when needed. This may mean reaching out to a close friend or family member who can provide comfort or guidance, requesting help with daily tasks (e.g., meal preparation, grocery runs, etc.), or seeking mental health support for you and/or a family member.
Below we highlight different ways to support your family as a whole. While this list is not exhaustive, we aim to provide helpful tips, tools, and strategies to nurture the psychological health and wellbeing of each member of your family and, if applicable, to strengthen the relationship between you and your spouse or partner.
You have probably noticed a number of changes in family life following your child’s transplant. It will be important to sit down as a family to regularly discuss how everyone is coping. You may find that there are periods when things seem to be going well and you feel like things are “under control.” At other times, you may find that your family is struggling. On top of the responsibility of caring for a child(ren) with a chronic illness, you are likely juggling many other personal and/or professional responsibilities, which can be overwhelming. These feelings are normal, but should not be ignored as they tend to contribute to declines in mental health over the long run. We encourage you to give yourself permission to ask for help when needed. This may mean reaching out to a close friend or family member who can provide comfort or guidance, requesting help with daily tasks (e.g., meal preparation, grocery runs, etc.), or seeking mental health support for you and/or a family member.
Below we highlight different ways to support your family as a whole. While this list is not exhaustive, we aim to provide helpful tips, tools, and strategies to nurture the psychological health and wellbeing of each member of your family and, if applicable, to strengthen the relationship between you and your spouse or partner.
Caring for YOUR OWN wellness
As you care for your family and juggle many responsibilities, one thing you may notice is that it is easy to neglect your own health while prioritizing everyone else's. You likely have been in “survival mode” and prioritizing what needs to get done for your family. You may not have even had time to stop and think about your own needs or emotional state. We are here to remind you that making time to care for yourself is crucial. You are an important and valued individual that deserves to feel as physically, mentally, and emotionally healthy as possible throughout this journey. Before planes depart, flight attendants state if the cabin experiences sudden pressure loss, you should secure your own oxygen mask before helping your children and/or others. Putting on your oxygen mask first means you won’t run out of breath and can help others afterwards. Similarly, prioritizing your health will fuel you to help care for your family too. For some parents and caregivers, self-care means having time to talk about topics other than ALD with close friends. For others, it means connecting with other ALD parents who can listen non-judgmentally about what you’re going through. Some caregivers find that a bit of time spent engaging in a hobby or pleasurable activity on a regular basis (e.g., weekly) just for themselves can go a long way to maintaining a sense of connection with their own needs.
Remember: it is okay to not be okay. There will be days that are really challenging and that test your patience and strength. A practice of self-forgiveness is important on those days when you’re not feeling like your best self. Having a journal or outlet to process and share what your family is going through may be helpful for you. You may also find yourself grieving the idea of having a “typical” life. Sometimes it may even seem like “ALD is winning.” These feelings are natural. As you learn to live with your child’s diagnosis of ALD, you will start to feel like you can take greater control over your life again. Be sure to take advantage of volunteers who offer to help so that you can have time for yourself to do what is most energizing and fulfilling for you.
Putting aside time to care for yourself might feel unrealistic, but many of the practices we offer below can be included in your daily or weekly schedule and completed in 10 minutes or less! A small practice goes a long way.
Meditation
Meditation has been practiced worldwide for centuries and more recently became a very popular self-care practice in Western countries. Meditation encourages awareness of your feelings and environment and then teaches you to simply observe these circumstances. One goal of meditation is to teach you to live with the array of emotions you feel daily and promote calmness in the many situations that are outside of your control. Some benefits associated with meditation can include reduced stress and negative emotions, and may help manage symptoms related to anxiety and sleep. A few ways to access meditation guides include apps (Headspace, Calm, Insight Timer), podcasts (Meditation Minis, Mindful in Minutes), YouTube, books by Jon Kabat-Zinn (Creator of Mindfulness-Based Stress Reduction), and in-person individual or group instruction.
Counseling or Therapy
Counselors and therapists apply their knowledge and training in psychology and mental health to better understand the lives of others and guide individuals down avenues to help deal with their struggles. They improve people’s lives by teaching how to understand feelings, emotions, and actions and provide them with skills to navigate and cope with difficult life experiences. Counselors and therapists work with clients individually, with couples or families, or as a group. Therapy may be offered to address short-term or long-term issues. To find a counselor or therapist, call your insurance provider to learn more about mental health coverage and how to get connected with a professional within your network. Virtual options may be available. Another option is to visit the following sites to search for professionals near you:
Psychology Today
Good Therapy
BetterHelp
Medication Management
For some individuals, they may feel gripped by anxiety or grief or it may be hard to get out of bed, to stop negative thoughts from taking over, and to overcome feelings of guilt. Even if you are already participating in therapy or counseling, you may find that you need more support to improve your wellbeing day-to-day. Medications can be helpful for reducing negative emotions and improving overall well-being. As a first step, talk to your primary care provider about your symptoms. They may be able to prescribe medication, or they may refer you to a psychiatrist who has expertise in the treatment of mental health concerns with medication options.
Other Ideas
Self-care does not have to be complicated, time consuming, or expensive. It can be as easy as changing your sheets or putting aside 10 minutes to read a book. Exercise is also very important for improving mood, attention, energy, and overall well-being. Try to make time each day for some exercise, such as a 15- to 30-minute walk outside or around the hospital. Other self-care ideas include improving your sleep habits, healthy eating, and spirituality. Visit this blog for more free self-care ideas.
Caring for your other child(ren)
As with the transplant process, your other child or children are likely still feeling a wide range of emotions about their sibling’s health: guilt, anger, sadness, worry, protectiveness over their sibling, love, and concern. These feelings may manifest in behaviors ranging from withdrawal from activities to a noticeable increase in emotional expression. While they may not have the same needs as your child who went through transplant, your other child or children may still have a lot to process about their sibling’s experience. They may have developed feelings surrounding changes in family dynamics, such as parents/siblings being gone from home for lengthy periods, or concerns about changes in their siblings’ activities or behaviors. Meet them where they are at mentally and emotionally, and find ways to build and maintain positive relationships with all of your children. Try to make an effort to ensure their well-being is attended to and let them know they are supported during this time too. One way to do this is spend one-on-one time with them when the opportunity is available. Even 5-10 minutes may be enough to feel a stronger connection on any given day. Consider also having regular check-ins with your child to see how they are doing.
If you feel like any of your other children are shutting down or having a hard time talking about their feelings, they may benefit from working with an individual or family therapist. You can also look into support programs for siblings such as Sibshops. Sibshops includes activities, games, and discussions about common experiences, joys, and concerns in a group setting with other children and teens who have a sibling with a disability or chronic health condition. Lastly, keeping in mind their developmental level, we encourage you to be transparent and honest when answering questions about their sibling’s condition to reduce any feelings of confusion and/or concern. Giving your other child or children a role or age-appropriate tasks during your family’s ALD journey could also help them feel empowered and included. If any adult children assist with care-taking, be sure to include them in all conversations with doctors and medical professionals related to caring for your affected child.
Caring for your marital/romantic relationship
Parenting stress will likely continue to ebb and flow as you readjust to life after transplant. There may be weeks where you feel like things are going well for your family, while other weeks you may find yourself overwhelmed by a new hurdle or aspect of your child’s care. This stress, along with other life stressors, could lead to marital or relationship strain. Finding time and energy to maintain your relationship might feel low on the list of priorities, but it is important to continue to find time to connect with your partner.
Boston Children’s Hospital interviewed parents who were navigating their children’s illnesses and asked them to provide tips on how they maintained their relationships. Some of their “lessons learned” include: celebrating small wins, being flexible with each other, talking about “normal” things, laughing together, supporting each other “judgment free”, showing grace, practicing forgiveness, taking breaks, having patience, and remembering this long journey should be conquered as a family.
Another way to strengthen your relationship is to utilize respite care. Respite care gives caregivers a break and a chance to relax and recharge. It provides short-term care that can be in-home or community-based. Research has shown parents caring for children with chronic illnesses and disabilities who use respite care services may experience improved marital quality and/or reduced stress (Harper et al., 2013; Roberston et al., 2011; Strunk, 2010). Taking a break and putting some of your time and energy into caring for yourself and maintaining relationships is critical. Whether you spend respite care time with your partner or alone, having the opportunity to indulge in “typical” activities (e.g., a workout, date night, grocery shopping) can positively affect your marriage. To find respite care near you, visit the National Respite Network And Resource Center.
Other ways to improve your relationship include having consistent communication, remembering that you are on the same team and have the same goal, attending couples counseling, changing negative habits, giving each other space when needed, and finding ways to have fun together.