Losing your child is often a huge crisis
It is a common notion that children should outlive their parents. Unfortunately, this is not always the case. Sometimes we have to give up our children far too soon.
Child Death Families Käpy ry provides peer support in Finland to parents that have lost their children. The loss of a child, whether sudden or after a prolonged illness, is one of the most traumatic experiences that a parent can go through. Peer support can help you process this grief.
Read more about Child Death Families Käpy ry (Link leads to external service)
Whether the loss of a child occurs suddenly or gradually, you can never fully prepare for it. However, a treatment plan made in advance can help the child live as good a life as possible before death, despite the fact that there is no available treatment to cure their illness.
Palliative care, treatment plans and end-of-life care
Palliative care is a form of care provided to an incurably ill person where their symptoms are actively treated and the focus is on alleviating pain and supporting a good quality of life. In palliative care, treatments that are unnecessary and impair quality of life are abandoned following a medical decision. A palliative approach to care can last for years and is not confined to the last moments before death.
Ideally, a patient’s plans for treatment during the final stages of life should be formulated before their general condition deteriorates and their prognosis worsens. The doctor draws up the advance care plan together with the patient and their loved ones.
It is important to give the patient the opportunity to discuss their own death freely. One way to do so is to bring up matters related to death while developing the advance care plan.
End-of-life care is provided during the last weeks or days of a dying person's life and aims to make sure that they feel safe and pain-free. Support from family and friends is also important in ensuring good end-of-life care.
Parent concerns regarding their own death
Parents of a person with special needs may worry a lot about how their young or adult child will manage after their parent's death. For this reason, it is important that the child gets to practise living independently even if they still live with their parent as an adult. For example, the child can practise independence when their parent is away on their caregiver’s leave.
The loss of a parent is always tough, even if the parent and the child no longer live together. It is therefore important that professionals know how to support a bereaved person with a disability through their grief and experience of death. Siblings can also provide an important safety net following the death of a parent.
Guardianship and wills
A parent may also be concerned about the finances of their special needs child after the parent's death. If an adult child is unable to manage their finances, they may be appointed a guardian.
In matters relating to estates, the guardian is disqualified from their duties if there is a conflict of interest, such as if they are also a beneficiary of the estate. In such cases, the person in need of a guardian will be appointed substitute guardian.
The guardian must act in the best interest of their client, or ward, in all situations. As a parent, you can draw up a will in which you express your wishes on how the guardian should manage your estate for the benefit of your child.