Being a parent or caregiver of a teenager is already stressful at times. When a serious health problem is added to the mix, the stress increases dramatically.
Your child's health challenges can affect your wellbeing in a number of ways, including your:
Self-care
As a parent, the time and energy you spend caring for your children can sometimes cause your own physical and emotional health to suffer. For example, if you are employed and your child is sick, you may end up using your vacation days to take your child to medical appointments. Events with friends and relatives may also have to be cancelled or postponed repeatedly. As a result, self-care often comes last on a very long list of things to do.
How you can respond
Take extra care of your health. One parent said:
"When my son gets sick, I’m usually fine through everything, but then once he’s better, I get sick. Apparently this happens to lots of people! I didn’t like it though, so I’ve been paying extra attention to myself as much as I can when my son is sick. I try to make sure I eat well and stay hydrated, and that I get enough rest (sleep is better, but it’s hard to sleep when I’m worrying). It’s not easy, but when I really try to take care of myself, I get sick less often or for a shorter amount of time."
Taking care of yourself is not a selfish act. In fact, it is actually the opposite; if you are well, you are better able to care for those around you.
Remember too that your child’s health issues are chronic (long-term). As your child’s most important role model, you will teach your child, by taking care of yourself, that self-care is important. This is a lesson they start learning when they are young. They continue learning it as they become adults.
Your emotional health
Many parents deal with depression and anxiety when a child is sick. Frustration, guilt, anger and resentment are common responses to the demands of caring for a sick child.
It is normal to feel sad and overwhelmed about your teenager’s need for a transplant. But for some people, the sadness and pressure can take over and make them less able to function and care for their child. This is called depression.
Depression
Here are some signs that you may have depression. Knowing these signs early can help you take steps to prevent or recover from it.
- You are more irritable.
- You feel sad or empty most days.
- You experience little or no pleasure in your days.
- You have trouble concentrating or making decisions.
- You either feel restless or slowed down most of the time.
- You eat more or less than you used to.
- You have trouble sleeping or you sleep too much.
- You feel aches and pains that won’t go away.
- You cry often.
- You feel tired or lethargic almost every day.
It is normal for a parent of a child with a long-term illness to experience some of these symptoms for a while. But if you experience any of these signs for more than two weeks or they are interfering with your everyday functioning, see a doctor or talk to a member of your child’s health-care team.
Having depression does not mean that you are weak. Nor does it mean that you are unable to care for your child. Depression can be caused by the stress of caring for a child with a long-term illness or a history of depression in the family. Sometimes there is no clear cause at all.
Depression can be treated very successfully if you get skilled help. A doctor or a mental health professional (psychologist, social worker or psychiatrist) has many different ways of treating depression that can help you feel more hopeful and able to cope.
Anxiety
It is natural to feel stressed and worried when a child is sick. You may be worried about the future, about your child’s suffering or about how you will cope with all the responsibility linked to your child’s medical care and treatment.
Anxiety is a more intense worry that interferes with you doing things that are important. If you have serious anxiety you may:
- feel tired but have trouble sleeping
- feel constantly tense
- have racing thoughts
- be unable to control how much time you spend worrying
- often feel aches and pains that aren’t due to a real physical illness
- feel irritable most of the time
- have more angry outbursts than usual
- shake or tremble
- have an episode where your heart races, you have a dry mouth or excess sweating or you are short of breath
- expect the worst to happen even though you do not have any proof
Caring for a sick child can make depression or anxiety worse, so it is very important to recognize when you are most at risk. Always do your best to eat well, drink enough water, be physically active and get enough sleep (even though this is much easier to say than do).
If you start experiencing signs of depression, if you are feeling anxious or if other health problems are not under control, see your doctor right away or talk to a counsellor or someone else you trust.
Research has shown that a child’s ability to cope with stress is directly related to their parents’ mental health. If you are reluctant to seek help for your own sake, do it for your child.
How you can respond
This is what some parents have said about how they decrease their stress levels.
Stay organized
Develop a system to keep track of information so you do not have to try to remember everything. One parent said:
"I used to feel really overwhelmed by the sheer volume of information we had to know, so we made a binder where we keep track of everything we want to remember. It has details like contact information for everyone involved in our daughter’s transplant, all of her appointments, a list of her medications and dates and results of important things likes tests and when she was in the hospital. Being organized like this has really helped me feel less overwhelmed."
Let go
This is what one mother said about the challenge of not being able to let go when her child was sick.
“A family friend gently pointed out to me that whenever my son was having problems with his health, I tried to micromanage everything, and that it was making my other kids miserable. (My husband said he was fine, but he was probably also affected by how I wasn’t coping so well.) It’s been really hard, but I’ve been seeing a counsellor and I make a point to talk with other parents whose kids have the same kind of health problems (so I know they ‘get it’). Over time, and with a lot of practice, I’ve gotten better at not trying to control everything.”
Our parent module on letting go has more information to help you let your child take gradually take more responsibility for their own health and wellbeing.
Talk to someone
Some parents find it helpful to speak with a counsellor. You may be able to access a counsellor through your workplace, if your work has an Employee Assistance Program (EAP). Counselling through EAP is free and confidential and your employer is not told that you are receiving these services.
Private counselling may also be available in your community. Your family doctor will know about what services exist and can help refer you to an appropriate counsellor or agency. Many communities have websites that list services, including free counselling agencies. If you are comfortable going online, try looking up “free counselling services in (name of your community)”. You can also ask your child’s social worker for ideas and help in connecting you with an appropriate service.
Relationship with your partner
A transplant affects all members of your family, so it makes sense that relationships between parents are affected.
Different coping styles
Having a sick child can put a lot of strain on a relationship. Differences in parenting styles or coping styles usually become even more obvious and problematic when a child is ill or when a child becomes a teenager and starts to challenge family rules.
We all cope differently. Sometimes worry and concern about a child can show themselves as anger, control or avoidance. Sometimes one parent becomes the main person who deals with medical issues. This can work well, but sometimes it does not, as the parent who is not as involved in medical issues can feel left out and frustrated.
Lack of time together
Parents of healthy children and teenagers often find it difficult to have time together as a couple. This can be even harder when your child has health problems, as more of your time is spent dealing with medical issues.
Time spent together as a couple, preferably not just talking about your children, is a very important protective factor in any relationship. Equally important is being able to communicate clearly, honestly and respectfully. These are not easy things to do when people are feeling stressed out! But time together and good communication skills make a couple’s relationship stronger and more able to withstand challenges.
Parents who are separated or divorced but are both actively involved in their child’s life can also find it very difficult to co-parent a child with a transplant. In this situation, respectful communication between parents is vital.
How you can respond
If you and your partner are finding it hard to make time for each other or communicate, please talk to someone you trust.
Here is one idea that a father has shared.
"My wife and I have 'date night' once a month. If we can't find a relative to watch the kids, we hire a babysitter. At first, we tried to not talk about the kids, but that was impossible, so we do talk about the kids on our date, but we make sure we talk about other things too."
Further information
For more information on the impact of an organ transplant, please see the following pages.
Impact of a transplant on your child
Impact of a child's transplant on siblings
Impact of a child's transplant on finances