It is a sad truth that the journey of caregiving may well end in loss. With brain tumor patients, the family’s grieving process and feelings of loss can begin even while the patient is still living. A terminal diagnosis, and perhaps changes in personality and behavior, can accelerate the sense of bereavement, adding to the emotional burden that caregivers face.
Coming to Terms
It’s not unusual to begin grieving the loss of a gravely ill loved one while they’re still alive. A brain tumor can rob you of your loved one’s company long before their passing. This “anticipatory grief” can be just as painful as the feelings of loss at the time of death.
- Family caregivers who have watched their loved one deteriorate, perhaps beyond recognition, may wish for the end to come, then feel horrible guilt for thinking such a thing. These feelings are not uncommon, and should not be a source of shame. When there’s no hope for recovery, a desire to reach the end of the journey is a desire to see the loved one at peace.
- Acknowledging that the end would bring a release to both the patient and the survivors can smooth the way for the family to begin preparing for the final loss. Lean on the professionals – palliative team members, hospice workers, spiritual advisors – to help you support the patient through the final length of the journey, and to support you as you deal with the details attending the final passage.
As the end approaches, it is comforting to realize that palliative care and/or hospice care will keep your loved one comfortable and pain-free during the final days. Your pain at losing this person may be greater than any physical discomfort the patient experiences. It can be helpful to understand what it is you’re witnessing during the final days, and how you can support the patient.
- When a life approaches its end, there are two separate systems that shut down: the body and the spirit. The body goes through a progression of quiet, physical changes as it prepares to stop functioning. The spirit begins to let go of its earthly connections as it prepares to depart. Death occurs when both the body and the spirit complete their processes; the final release comes quietly, and although long expected, may leave you with a sense of shock that this life has ended.
- When terminally ill patients near the end of their lives, it can be hard for them – and their caregivers – to surrender. They don’t want to leave, and you don’t want them to go. When the end is near, ease the transition for your loved one by saying goodbye, and telling them it’s all right to go. Difficult as it sounds, saying goodbye with love can bring you peace, and can help the patient in the final days.
- There is no right or wrong way to go through this passage. Some people like to have their clergy or spiritual advisor with them; others prefer to be surrounded by family; still others want to be alone with the patient. It is your decision, and no one should question or dictate how you behave in this situation. If you are being pressured to behave a certain way – whether it is a spiritual issue, a visitor issue, or even being told how to keep vigil – and aren’t comfortable, do not hesitate to push back and protect yourself. Do what is right and respectful for you and your loved one.
Taking Time to Grieve
When the journey has ended, a new journey will begin for you. Grieving and dealing with loss is a complicated process that affects each person differently. Again, no one can tell you how to do it. The initial grieving of a bereavement – the intense feelings of loss – generally last anywhere from three months to a year. Some people experience this profound sense of loss for two years or longer. Grief can have a devastating effect on a person’s physical, mental and spiritual health, particularly during the early stages.
- A grieving person often exhibits physical symptoms similar to depression; low energy, headaches, loss of appetite and interest in the outside world. You may feel excessively tired, and want to sleep the days away. While this is normal, it is important to maintain a healthy lifestyle of diet, exercise and rest, in order to help your body stay strong through the process.
- Emotionally, a grieving person may at first feel numb, and have difficulty returning to everyday life. In addition to mourning the loss of your loved one, you are also adjusting to yet another change in lifestyle… you are no longer a caregiver. Irritability, depression and lack of focus are not unusual. Nor is anger, which can manifest itself in unexpected ways. Give yourself permission to not feel OK for awhile. Grieving takes time.
- Everybody deals with grief differently. Some people throw themselves in to work. Others may take refuge in high-risk behavior as a way to numb the pain. Still others pretend they’re fine. There are many resources for bereavement counseling and support groups, either through the hospital where your loved one was treated, a hospice center, a place of worship or a counseling center. This is not a process you want to attempt alone, when you’re already struggling with the sense of loneliness that loss brings.
- Eventually someone coping with bereavement emerges from the fog of grief. The day will come when you’ll be able to think of the one who’s gone without the pain of loss. You will be able to celebrate that person’s life and how he or she enriched yours. You will have come full circle.