coping with chronically ill parent

This kind of communication doesn't always have to be verbal. In a tangible sense, having a parent, sibling, child or spouse with a chronic illness takes a toll on family members’ time, money and energy. these feelings are interfering with daily function, or your child seems withdrawn, 8 Tips for Overcoming Obstacles to Exercise. Explain that that you and your family will make him or her as comfortable as possible. Coping with Chronic Illness -- see more articles For specific medical advice, diagnoses, and treatment, In all cases, parents should pay close attention, © 1995-document.write(KHcopyDate); The Nemours Foundation. How you answer will depend not only on and should be encouraged and given opportunities to express those feelings and any advice on how to talk to your child about the illness. If you or another member of your family is coping with a serious illness, you know the impact it can have on your children as they confront the anger and anxiety that can come with changing roles and routines. Support from care providers, such as mental health professionals and social workers, can help families navigate some of these challenges. What that entails will vary, depending on whether children attend child care, the availability of relatives and friends, and a partner’s ability to get time off work. Regardless of their age, it's important for kids to know that there are people Does Divorce Damage Infants and Toddlers? If your child's treatment is expected to Coping as a Chronically Ill Parent Let me draw your attention to a good article by a parent on The Huffington Post called “ 6 Survival Tips for Parenting When You’re Sick .” Please read before continuing. Work closely with the school. Encourage your child to share thoughts and feelings about dealing with his or her illness. Regular text size. Â, It’s important to acknowledge these losses, both to ourselves and our children.  When we allow our children to give voice to their emotions, we create a space for intimacy.  For example, a child may burst into tears or become angry at his parent for not being able to do what he would like.  A parent who can respond with gentle tolerance—“You are so angry that I can’t play hide-and-go-seek with you.  It really does stink when I am stuck on the couch”—lets her child know that anger is an acceptable emotion.  “I see you,” is the subtext of this parental response.  “I see that you are angry and disappointed, and I still love you.  You can talk to me about these hard feelings and I will be with you as you feel them.” Â, Flexibility is also key as chronically ill parents find ways to meet their children’s needs.  For example, a parent can say to a child demanding to be carried, “I wish I could pick you up, but my arms are not working great today.  I would love to hold you, though.  Could we snuggle together on the couch?”  Parents can offer a different type of play to a child who wants an active game, suggesting an art project or a book or even offering to watch as the child is active.  “I can’t run with you today, but I can watch you run.  Show me how fast you can go!” Â, Humor also is helpful, as a parent can imagine aloud in an exaggerated fashion the fun things she would like to do with her child if her health allowed.  “If my legs were stronger today, I think I would like to jump up to the moon.  Would you come with me?  What would we do there?” Â, It can be frightening for a child to see a parent experience illness.  One question that children wonder about is who will take care of them if their parent dies or becomes incapacitated.  Acknowledging this worry and the scary feelings that accompany it is important, as is honest reassurance.  “I do have an illness, but I have excellent doctors and nurses taking care of me.  Let’s talk together about the things you are worried about.”  Explaining in age-appropriate language what the treatment plan is and the benefits expected can help children retain confidence that adults are acting appropriately to solve a difficult problem.  Keeping children in the dark by telling them that they are “too young to understand” leaves a child alone with his fears and his imagination, increasing anxiety.Â, Children also may wonder if they can catch their parent’s illness.  Again, empathy and honest reassurance are called for.  Parents also may stress healthy behaviors as a family value, stating, “It’s important to us that we all take good care of ourselves.  That’s why we try to eat healthy foods and get enough sleep and exercise.”, Finally, children may imagine that they caused or exacerbated their parent’s illness, thinking, “If I weren’t so bad, Mom would would be well.”  Children use this type of thinking in an attempt to control that which cannot be controlled.  Our response can help children move toward a healthy acceptance that there are things they cannot change.  We might say, “My illness is caused from the cells in my body not working as they should.  I didn’t cause it, and neither did you.  Sometimes things just happen and we don’t know why.”Â, Having a network of caring adults in a child’s life is always important but takes on additional meaning when a parent lives with chronic illness.  Extended family and close friends can pick up the slack when a parent’s illness flares.  They also can fill in for a parent whose illness makes it difficult for her to engage in particular activities.  A child whose parent can’t play sports, for example, may have a relative or friend who can participate in athletics with them. As much as possible, try to maintain the same family routine you had before your child became ill. Beyond handling physical challenges and medical needs, you'll have to deal with your child's emotional needs and the impact that a prolonged illness can have on the entire family. Let them carpool siblings to soccer or theater practice. that might go with along with those treatments. Some emerging research conducted in the fields of medicine, nursing, and family studies has suggested that children of chronically ill parents are at an increased risk for adjustment difficulties and emotional and behavioral problems. If you and your spouse have Develop working partnerships with health care professionals. Many parents struggle with how to speak to a child about his or her illness. Help your child cope. reality. your child’s medical situation, but also your child's age and maturity level. Remember that you can't do it all. said, or did. If it is reassuring to your child, you may refer to your religious, spiritual, They can keep an eye out for are all part of the team. Don't pretend When most of us think about parenting, we imagine being active participants throughout our children’s lives.  We envision chasing after our toddler at the park, attending high school sporting events, and hosting yearly birthday parties.  We picture family dinners, bike rides, and vacations to new places.  What we don’t foresee is the difficulty of parenting while coping with the fatigue, pain, medication and hospitalizations that comprise life with chronic illness.  Can we parent well while living with illness? Children of parents with a chronic medical condition (CMC) are at an increased risk for developing health-related and social-emotional problems, such as somatic complaints, social isolation, and excessive concern to acquire an illness themselves (Compas, 1994; Earley and Cushway 2002; Faulkner and Davey 2002; Pedersen and Revenson 2005). How Many Years of Life Will a Bad Relationship Cost You? Your doctor or other medical professional probably can offer child. De Baets, S., Vahalst, M., Coussens, M., et al. A chronic illness may never go away and can disrupt your lifestyle in many ways. This includes ‘anticipatory guidance’ that reinforces the need for health maintenance to help prevent the need for crisis care. Â, It can be painful to observe other adults’ involvement with one’s child.  A father living with chronic illness may think, “I want to be the one playing sports with my daughter; I don’t want her aunt to have that closeness when I can’t.”  This is an understandable feeling.  Remember, though, that NOBODY can replace you as the parent.  While other adults can step in and provide your child with experiences important to their development, they are not and never will be a replacement for you.  These “other adults” should be conscious of bringing you into these experiences even when you cannot be present physically.  They can take photographs or video of the child for the express purpose of “showing Dad when you get home.”  They can say, “Mom will be so interested to hear all about our time together.  What do you think she’ll say when you tell her about it?” Â, Children can feel helpless when a parent is ill, and this helplessness may be expressed in a variety of behaviors.  Some children might balk at going to the hospital to visit a sick parent. Others may torment a sibling when a parent is not feeling well.  Allowing children to “help” in a way that calls upon their talents can increase their feeling of efficacy and decrease their need to act out.  An artistic child may draw beautiful pictures to decorate his father’s hospital room; a musical child may put together a special playlist of inspirational songs for her mom when she’s having a flare.  An active child can accompany Dad as he walks a bit more each day after surgery.  A fashion-forward child can be in charge of picking out a new bathrobe for Mom. support. impossible, but spoiling or coddling can only make it harder for a child to return Taking care of a chronically ill child is one of the most draining and difficult tasks a parent can face. Just like any adult, a child will need time to adjust to the diagnosis and the also need the routines of childhood. Parents with a chronic illness need a Plan B, and most likely a Plan C, for child care. Methods: Employing a narrative, meta-synthesis of the current literature, this review identified 3 key themes related to working parents of children with chronic illness. have to deal with your child's emotional needs and the impact that a prolonged Prior to this, I had no experience with a chronic illness. The "old normal" may have been the entire family around the and to address them specifically. be honest if a procedure may cause some discomfort, pain, pressure, or stinging. However, this … Let procedures, and frequent checkups can throw big kinks into everyone's schedules and take an emotional toll on the entire family. Article: Resilience in Health and Illness. Instead, To ease the pressure, seek help to keep the family routines as close to normal Many hospitals give parents the option to speak to their child about a long-term Coping is an ongoing process and there is no right or wrong way to manage this time of your life. illness can have on the entire family. Beyond handling physical challenges and medical needs, you'll Depend on friends. on clinic nights. concerns and fears. If they are involved as a family in caring for the chronically ill child, and also are able to savor the sweet kindness experienced in helping that brother or sister, they may be more forgiving and understanding of his needs. Caring for a Seriously Ill Child. How Parenting Affects a Child's Development, Invisible Wounds of the Sensitive, Emotionally Intense Child. behavioral changes or signs of stress among your kids. table for a home-cooked meal at 6:00, while the "new normal" may be takeout pizza The answer is a resounding YES.  In today’s blog post, we’ll look at some of the challenges associated with combining parenthood and chronic illness and address ways to meet those challenges. Music, drawing, or that your child is right. For example, you may need to: cope with pain or discomfort from your symptoms consult your doctor. Article: The Impact of COVID-19 on Pediatric Adherence and Self-Management. Also, consider talking with your other children's teachers or school counselors The foremost — and perhaps trickiest — To the Parents of a Chronically Ill Child If you’re anything like me, you want people to tell you the truth. When they come to the hospital, they can develop a more realistic picture explain and prepare your child for treatments — and any possible discomfort It's also important to accurately who love them and will be there for them, and that they'll be kept comfortable. goal. for it (if that's the case). Effects of Chronic Illness When you have a chronic illness, pain and fatigue may become a frequent part of your day. Â, Heightened Emotional Attunement as a Response to Physical Limitations, Many parents with chronic illness battle symptoms that limit their ability to perform physical tasks.  Lifting a child, making dinner, and playing active games are just some of the activities that can challenge us when illness is flaring.  It can feel painful both to disappoint our children and also to miss out on our own longed-for experiences. Print. Siblings should continue to attend school and their usual recreational 13 In contrast, in a recent meta-analysis by Mendelson et al, 19 the authors found that NICU-based maternal depression- and … that they are sick. It followed from the answers of respondents that they most frequently applied internal coping strategies to cope with problems – the redefinition of a stressful event as a more manageable … task for worried parents is to treat a sick child as normally as possible. physical illness. (You also may want to reassure your other kids that nothing they said or did caused their sibling's illness.). Planning a and Clipart.com. the situation less frightening and more understandable. Think about getting professional counseling if you see signs that At times it's difficult to focus on your healthy child when there is a family member who is seriously ill. One rule of thumb is to focus on spending quality rather than quantity time with your child. While their illness may create certain difficulties, with the support of their parents and other community based services as needed most lead happy, effective and exciting lives and grow up to become productive adults. Depending Taking care of a chronically ill child is one of the most draining and difficult The hospital, tests, and medicine may feel frightening, but they're part staffs, or accompanying their sick sibling to the clinic for treatments can help make Sita's talk asks you to confront the issues surrounding chronic illness. Don't give too much information, but also don't try to hide the facts. common for them to fear that they brought their sickness on by something they thought, present. The importance of effective coordination of care is also stressed and efforts are made to incorporate family members as an integra… Hit the nail on the head! the illness. You want that specialist to come into the room and tell you exactly what is going on, what they know, what they don’t and how much they’re guessing with the … Why are so many people drawn to conspiracy theories in times of crisis? This may seem Coping with a chronic illness is one thing, but trying to parent whilst living with pain, disability or health issues is next level. nurses, etc.) It's important for kids to know it's OK to feel angry about Consult other parents in support groups at your care center or hospital or online. so that their other kids don't feel pushed aside by the demands of their sick The content of this field is kept private and will not be shown publicly. It’s important for parents to maintain their mental health as well. Kids with chronic illnesses certainly require extra "tender loving care", but before bringing up your own feelings or explanations. Are Emotional Support Dogs Always a Cure-All? Develop illness action plans for trusted adults to follow, such as grandparents, babysitters and school staff. distinct coping styles, talk about them and try to accommodate them. Reward your child for daily cooperation with medical management tasks, or for taking age-appropriate responsibility. tasks a parent can face. death such as "going to sleep." of care. It can also help them to be included in the treatment process when possible. It's important for a child to know that he or she is sick and will be getting lots The perception of stress by parents differed significantly (p < 0.01) according to the kind of chronic disease (mostly the parents of children suffering from celiac disease, juvenile rheumatoid arthritis and diabetes mellitus). But Early Adolescence and Losing Popularity with One's Child, Tokophobia: Fear of Pregnancy and Childbirth, Sound the Alarm: The Moms Are Not Alright, Psychology Today © 2020 Sussex Publishers, LLC, Inferring Psychiatric Illness Based on Digital Activity Crosses Milestone, Sleep Biomarkers and Alzheimer's Disease Risk, Music Achievement's Academic Perks Hold Up Under Scrutiny. depressed, and shows radical changes in eating and sleeping habits unrelated to the fights or fall behind in schoolwork. Understand that your child’s thoughts and feelings may change over time, and help your child cope by providing distraction, remaining active, encouraging social interactions and being positive. The third stage in coping with a chronic illness is all about taking it in stride. diagnosis alone, or with the doctor or the entire medical team (doctors, social workers, When your child leaves the hospital for home, normalcy is the This review paper aims to summarize and critique existing literature on working parents of children with a chronic condition, by focusing on patterns of parent work, the challenges experienced, and the flow-on consequences to well-being. Kids also may need reminders that they're not responsible for the illness. Despite the circumstances, this means setting limits on unacceptable at night.

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