Caregiving: 3 Tips to Help With Anticipatory Grief

Anticipatory Grief

[By Christine Brownlee]

Medicine has come a long way. There are so many treatment modalities to help someone with a life-threatening disease. Unfortunately, many of these modalities do not completely cure; life is merely prolonged. The treatments or procedures often leave the person very debilitated or, at the very least, quite ill with the side effects. Moreover, the final outcome or prognosis may not change all that much.  One in four people will have a serious, debilitating and disabling chronic disease. Many will rely on family or friends to be their caregivers until they end up in a hospital or hospice for their final days.

The caregiver is caught in a mesh of trying to provide care for someone they love such as a child, spouse, or parent along with caring for themselves, in some cases working full or part time and suffering their own mental anguish knowing that death is inevitable and only a matter of time. Both the person who is ill and the person who is doing the caregiving may realize that these are the final times. That time can be days, months or years with a roller coaster ride of good times and bad, where the illness seems to subside and then come back full force with a vengeance.

This is the ride that I took with my husband’s illness from a heart attack 20 years ago and all of the resultant ups and downs of heart disease, to drug toxicity, to lupus and then to a stroke one year ago. During one of the low points I realized I was not sleeping well and I was just so very tired. I saw my doctor and there was nothing clinically wrong to account for the fatigue. In further discussion of my husband’s illness I suddenly blurted out: “I feel like I am grieving but he is not dead yet!” Realizing what I had just said caused me to burst into tears. It sounded as though I was angry that he wasn’t dead but that was completely untrue. The feelings I was experiencing were conflicting and troubling. I thought that I was not normal or at the very least that I was the only person who had ever gone through this.

I realized after some thought and investigation that I was experiencing anticipatory grief. Anticipatory grief, according to the Fundamentals of Hospice Palliative Care, is the separation anxiety experienced by dying persons, family and friends as they witness the terminal illness and slow death.

How do you know you are experiencing anticipatory grief? Here are some clues:

  1. You feel sad intermittently at sudden unexpected times.
  2. You feel exhausted. You believe there is no time for you to do things for yourself.
  3. You feel guilty whenever you do anything for yourself.
  4. You believe that your desires and life goals have been put on indefinite hold.
  5. You think about and worry about the death of your loved one so you start to pull away from times of closeness and intimacy believing that you won’t hurt so badly if you start your grieving now.
  6. You wish it were over and then feel ashamed of such thoughts.

The following tips helped me.

Tip 1:  Knowing that what I was experiencing was completely normal helped immensely; however, no matter how normal a reaction it was it was still causing me physical health problems. It is extremely important to attend to your own physical health; otherwise, you will become ill with a new disease or an exacerbation of one you already have. You will be unable to fulfill your caregiving role or worse, need caregiving yourself. It has been found that many times a caregiver dies before the person they are caring for does. Don’t let this be you.

Tip 2:  Take time for yourself! I cannot stress this enough. If you do not do at least one activity per week that gives you joy, happiness, peace or even just relief at getting out of the house your mental health will deteriorate. It doesn’t have to be a trip away for a week, although that would be wonderful if you would arrange for respite care to do this, but it does need to be something you enjoy doing. It may be something that you liked to do but gave up because you felt too guilty taking time away. If you do this you will not only come back home feeling more able to tackle the caregiving duties with a livelier step but you will also stay connected to who you really are; your life dreams and desires.

Tip 3:  Know this – anticipatory grief does not lessen the amount of grief you will feel once death occurs. You will still have that grief work to do. Withdrawing emotionally from the one you love in hopes to lessen that final grief work won’t help. What it will do is make your loved one feel somewhat abandoned, which will only increase your guilt. Spend time with your loved one doing things together as long as possible. This might be from simply taking the time to sit and talk to having a dinner with family at home to going out for dinner or a movie. As time goes on, and the disease progresses and many of these are not possible then a foot rub or sitting and holding hands might be all that is needed to bring closeness and comfort.

Knowing what the signs of anticipatory grief are will help you understand what is happening to you. I hope that these tips that helped me alleviate some of my pain will be just as helpful for you to cope and manage this type of grief.

About the Author

Christine is a RN with 35+ years of experience. She is a certified “From Heartbreak to Happiness” Grief Coach specializing in encouraging and inspiring women whose partner has died or is dying to reconnect with their life dreams and soar from sadness and sorrow to peace and happiness. She is currently working on her book ‘A Caregiver’s Story’ – 7 Tips to Navigate and find Balance. This book stems from her being in the caregiving role for her husband on and off for the last 20 years. Visit her website for more information.

Article Source: Caregiving: 3 Tips to Help With Anticipatory Grief