Terminal childhood diseases are devastating for families, healthcare providers, and the community. These are genetic abnormalities or illnesses that will ultimately result in the death of a child, despite healthcare measures taken to improve the child’s wellbeing. Many illnesses or genetic abnormalities will result in a very short lifespan, giving the families only a little bit of time to bond with their child. Most of that time is consumed with hospital stays, doctor visits, and treatment plans, reducing the amount of quality time that families can spend with their child.
Dealing with the death of a child is never easy. The death of a child can be the demise of many relationships, trigger alcohol and drug abuse, and lead to issues maintaining employment. It can upend one’s whole world to lose a child. Without proper coping skills, both before and after death, it may be even more devastating dealing with the reality of the situation. Although there is no quick fix to accepting the death of one’s child, there are some ways to help progress through grief and be able to function at a manageable level. Find the right coping skills for you and work together with your family to find a way that everyone can move forward and begin healing. Here are some ways to help cope with terminal childhood disease.
Understand the disease
The first step in coping with a terminal illness is to understand it. Without a proper understanding, families may think that medical professionals are just giving up and not trying everything. There are certain diseases where genetic abnormalities or illnesses take over and go beyond what current medical treatments are capable of addressing. The more you know about your child’s disease, the more you’ll be able to understand the true limits of medicine.
Some diseases progress really fast, making it difficult for medical professionals to properly diagnose it before it’s too late. Some are slowly progressive degenerative disorders that will eventually lead to a detrimental decline in function of your child. The genetic nature of some of these diseases makes it hard to find a treatment because it affects so many different cells in the body. If there is a treatment available, talk with the healthcare provider and ask if your child is a good candidate. If you do your own research and are okay with experimental trials, or top tier professionals who may have advanced in their treatment of that disease, that is also an option.
However, for many of these terminal diseases, the best treatment option is palliative care and ensuring that your child and you are both comfortable while the body continues to try and fight the battle.
Make fun memories while you can
The diagnosis of a terminal illness is not the immediate end of a child’s life. They still have life to live, and although most of it will be consumed with medical treatments, all of it does not have to be. It will be a more positive experience for both you and your child to try and make as many fun memories while you can. It may help bring you solace that even though so much was out of your control and seems unfair, you at least got to spend time doing fun things to improve the joy your child felt.
Children are resilient and depend on their parents for guidance during times of adversity. Children may not necessarily understand the full extent of their diagnosis, or what lies in the future. They are very present individuals, and parents should aim to be that way as well. It’s so easy to fall into the trap of thinking about what is down the road. But then that reduces the amount of time you do have at the time.
Find some games or activities they can do, and try to really enjoy doing that with them. These will provide you with better memories of their final moments than just being a sick child in the hospital. Get your entire family together to enjoy a good time. It may serve as a well-needed distraction from a tragic reality.
Find community or spiritual support
Dealing with the diagnosis of a terminal illness is tough. It’s even tougher when it’s a child because they haven’t even been given a chance to explore life. There is so much that adults wish their child could experience, and may almost feel robbed by the diagnosis. It’s very difficult to deal with this alone or find solace in our own understanding.
Community and/or spiritual support will be very important in a time like this. With social media, it’s so easy to connect with other parents who may have gone through the same thing and can share how they dealt with the situation. Spiritual and religious leaders may help easy the acceptance of the transition from life to death as they bring a more optimistic and promising perspective on the after life.
Find people outside of your immediate family who are not consumed by the emotion of taking care of a terminally ill child. This will give you a break from the merry-go-round of the hospital, and will also give you a new perspective on how to deal with the situation.
Traverse grief as a family
Families can be so easily strained by a terminal diagnosis or a death in a family. Children may not understand the full concept, but spouses or partners may be pulled apart, which will further put strain on the other family members. People deal with grief differently, and this difference of pace in acceptance may be the center of strain between two people. Financial strain from hospital bills can also cause issues, as well as various coping skills, some of which may be detrimental (substance abuse, infidelity, gambling, etc.).
It’s important to try and stay together in this moment. Everyone does grieve differently, but talk openly about what you need and listen openly about what the other person needs. It’s unfair to be upset with someone because they grieve in a way other than what you want them to. However, if their habits only cause more strife to the family, then it’s very important to have a conversation about it early before it spirals out of control.
Work with outside professionals who will serve as the mediator between various personalities, coping skills, and phases of grief. Grief counselors, marriage and family counselors, and even hospital staff or pastoral leaders can provide that unifying force. It’s important to start this early, like as soon as you receive the diagnosis. If you wait until things are bad, it may be too late. But if you can start at point A together and make it all the way to Z with support and guidance, then that may provide you the support you need to keep you family together.
If you have a terminally ill child and require extra support, then please reach out to Diverse Health Services. We have plenty of home health options that may make it easier for families to make time to get this support while knowing your child is being taken care of and having their needs met.
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