One of the most difficult things that a caregiver will have to face is undoubtedly watching their loved one’s life slowly slipping away, knowing that there is nothing that they can do to prevent the deterioration of their loved one’s health. We cry while the person we knew disappears long before they leave this earth, because we maintain a relationship with a transformed person, who we no longer recognize, but for whom the power of feelings remains. This process is called anticipatory grief, or ambiguous loss, and it is common in loved ones of people with Alzheimer’s, cancer or other incurable or degenerative diseases.
As the disease progresses, the caregiver will experience losses and sorrows not linked to the physical loss of their loved one, but rather to everything that the disease is taking with it: the projects that will not come to fruition, the much-enjoyed activities that are now inaccessible, the package of personality traits we loved in the person that are crumbling away, a spouse or a parent whose presence is no longer the same, etc.
Although it is different from the grief we experience after a death, anticipatory grief stirs up the same emotions: sadness, anger, distress and depression and it is often accompanied by exhaustion caused by the caregiver role.
The caregiver is torn by a range of disconcerting emotions. This is completely normal. Accompanying a person until the end of their illness allows the caregiver to progressively get used to the idea, despite their powerlessness to stop the suffering or the approaching death. It is very demanding emotionally.
Although this concept is poorly understood by friends and family and sometimes by the caregiver themselves, anticipatory grief allows caregivers to do the following:
- slowly become aware of the imminent departure of the care receiver and gradually detach themselves emotionally;
- discuss their sorrows and fears with their loved one, when this is possible;
- fully enjoy precious moments with their loved one before they depart;
- make up with the person who is dying, if needed, and come to terms with life continuing after the person’s death.
Here are a few things to keep in mind to help you get through this stage with a little more serenity:
- Accept the emotions that arise in you: anticipatory grief is normal. Being able to identify what you are feeling will help you find solutions that will allow you to overcome the grief.
- Surround yourself with people who are experiencing similar difficulties by joining a support group. This can help you break the feeling of isolation and provide you with an opportunity to share your experience with other caregivers.
- You may feel like you are abandoning your loved one by accepting the fact that they are at the end of their life; this is not the case. The fact that you are by your loved one’s side in this last stage means that you are committed, empathetic and attentive toward your loved one. Accepting the departure of a loved one often comes with fear, pain and sadness. This is a process that requires courage and the ability to face the realities of life and what is destined to happen.
- It is false to believe that time itself heals all wounds when it comes to grief. Recognizing that you are experiencing anticipatory grief will help you start on the path toward healing. Anticipatory grief is mentally and emotionally exhausting. To be able to accompany your loved one and continue your role as a caregiver until the end, it is important that you take care or yourself and your hurts.
- Unlike a sudden death, a death that follows the course of a long illness sometimes causes friends and family to feel some relief when the ill person departs. This feeling is completely normal for a caregiver who may have taken care of a loved one for many years before this person’s death. This in no way diminishes the love that you carried for this person, but you may well experience relief that a stressful and exhausting situation is over.
Know that there are resources to support you through grief, whether or not it is anticipatory. Ideally, you will find someone who is neutral and outside your situation, such as a psychosocial worker, who will be able to listen to you without judgement and advise you as needed.