Caregiver Grief: Losing your Patient
Summary: Caregiving can be a very beneficial role to take on both for yourself and your patient. Bonds are formed between the caregiver and patient that can have life-long, lasting effects on all parties involved. The stress and grief caregivers face while watching their patient decline and ultimately face their death can take a great toll, if the caregiver is not prepared. Here you can read how caregivers should prepare for the myriad of emotions that are to come, and learn how to process them in a healthy way to continue living.
When someone in your family falls seriously ill, their families and friends pull together to support and care for their person through various methods of care. This might include home care, planning and carrying out of outside care providers and management of financial and insurance documentation, appointments with medical care teams and specialists, and surgical recovery assistance. As time rolls on, one person usually stands out as the primary caregiver.
This caregiver could be anyone, but most often this role falls into the hands of a woman. Studies have shown that those who have multiple daughters, or daughters-in-law, have a higher chance of ending their life in homecare, rather than a nursing home environment.
If you have taken on the role as primary caregiver, you know what this adjustment asks and requires. You will become proficient in nursing care and develop a focused routine with your patient, per the schedule that best works for you both. This may impact your life, weaken friendships, and lessen the amount of activities you are able to do outside of the house. In addition to the life changes and new duties, you may also experience anticipatory grief, which is grief that comes with knowing your patient will soon face death.
As caregivers, we observe the gradual daily decline and then loss of the patient and family member. Watching someone grow frail and less than they were can be extremely taxing and difficult. The hoped-for future is now gone, and you are left to walk them to their end. This is all part of the life left to grieve, which is perfectly normal.
The Grief from Losing Your Patient
When the patient you have been caring for passes away, you will need time to adjust back into life not only not as a caregiver, but without all of the extra duties and stressors that you have grown accustomed to. While this might seem like a nice thought for the future, to be relieved from this stress, the grief that will fill its empty void will be significant. There may also be a dramatic change in your home life, as well. If you were living with the patient, their extra medical equipment will be removed, and medications cleared out. Any feelings of loss and mourning are welcome and should be acknowledged in your new life. Properly processing these emotions can lead to a calmer future with a healthy level of grief and mourning. It is important you give yourself whatever time is needed to help recover from this loss and drastic life change.
Unwelcome Feelings and Awkward Situations
Caregivers have feelings and emotions that other family members who were not directly caring for the patient will not. Your natural relief that the patient’s suffering and pain has ended does not lessen your grief, but instead, could increase it. The overwhelming feelings of guilt for not being able to do more, even knowing this was always the outcome, can be life stopping. Other family members often criticize a caregiver, questioning their motives, accusing them of odd behavior, and making the caregiver feel as if they have done something wrong. Caregivers have been ostracized be their families after their patient’s death for this reason. In these severe cases of grief and familiar withdraw, counseling may be the best option for all parties involved.
Other aspects of the circumstances can influence the way a person chooses to grieve. In certain cases, the caregiver may not have been close to the parent, sibling or relative they cared for, or may not have first established the relationship they desired. These feelings can build to ambivalence and resentment toward the patient that persists after the loss of the patient.
There have also been several cases of caregivers caring for a non-family member or loved one. In some cases, the family remains supportive of the caregiver and their patient, and in other situations, the family does not understand why the caregiver has taken on such a stressful role, and feel it better left to others and the patient’s family to deal with. This can cause undue turmoil for the patient and the caregiver.
Denial is another challenging feeling faced by caregivers, especially those tending to their spouse, receiving no other support from children, other family, or friends. The surviving spouse often has difficulty accepting the death, feeling that their only person is gone. Anger often follows closely behind denial, wishing that the outcome of death had waited, or been postponed even longer.
An unprepared caregiver is more likely to grieve in unhealthy ways, which may include alcohol and illegal substances. Even if the caregiving situation was perfect with the patient, loving and healthy with positive communication, feelings of guilt, denial, anger and relief can taint the grieving process as a whole.
When you lose the family member you cared for, there can be so many complex and unexpected layers to your personal grieving process. It may be beneficial for you to reach out to a support group for caregivers, meet others in the same places you have been, and speak with those who have traveled these rocky roads of grief and love. In today’s world, these groups are abundant and offer many options for different cancer and illness-related situations. If you are in need of this information, simply reach out to your doctors and medical care team to get contact information for something local to assist you today.