Jun 10, 2014

The Role of Anticipatory Grief in Alzheimer's and Dementia Care

Anticipatory Grief often begins to occur in the mid - late stages of Alzheimer's disease, and allows one to become emotionally prepared for the inevitable.

Marie Marley
Alzheimer's Reading Room

As Ed’s mental capacity declined I became more and more depressed and felt overwhelmed by the prospect of his approaching death.

The Role of Anticipatory Grief in Dementia Care

Then when I finally arranged for hospice care I began focusing almost exclusively on how I would feel after he died. I became acutely aware that the time was coming closer and closer.

I had trouble carrying out my usual daily life activities and would often sit at home numbly staring at the TV without understanding what was being shown. I was suffering from what is called anticipatory grief – grief that occurs while awaiting death.


Back in March I published an article here entitled, “Grief and More Grief – A Tragic Emotion for Caregivers.” It discussed various kinds of grief. And last week I published an article on “How to Deal With Never-Ending Grief.”

The present article focuses exclusively on anticipatory grief.

Anticipatory grief is defined on MedicineNet.com as “The normal mourning that occurs when a patient or family is expecting a death.”

Paula Spencer Scott, writing on Caring.com, in an article entitled "How to Cope With the ‘Living Death’ of Alzheimer’s", says that when dealing with Alzheimer’s this grief most often occurs in the mid- late-stages of the disease, as death is seen to be quickly approaching.

Although anticipatory grief doesn’t always occur, when it does it’s important to understand it’s normal.

The Medicine.Net article states that symptoms of anticipatory death include: depression, extreme concern for the dying person, preparing for the death, and adjusting to changes caused by the death.

An article on Harvard’s Helpguide.org lists additional symptoms such as -- sorrow, anxiety, anger and denial.

MedicineNet also states that the purpose of anticipatory grief is to give “family and friends more time to slowly get used to the reality of the loss.

The Family Caregiver Alliance says it is “a way of allowing us to prepare emotionally for the inevitable.”

Alone

Anticipatory grief  when a loved one has Alzheimer’s is similar to that which occurs with other terminal illnesses, but also has some distinct features. The chief among these is loss of the person one used to know – which doesn't typically occur with other medical conditions.

The Harvard post lists three primary ways to deal with anticipatory grief:
  1.  Talk with sympathetic friends or family members, especially those who have weathered similar situations,
  2. Join a support group  online or in person,
  3. Read  books or listen to tapes designed for caregivers.
Scott also lists ways of coping with this type of grief. These include, among others,
  1. Know your feelings  are normal, 
  2. Understand that it’s real grief
  3. Be nice  to yourself, 
  4. Tap into hospice care (which provides support for caregivers as well as the patient.)
In my experience, the single most important way to cope with anticipatory grief is to stop focusing on the person’s impending death and begin focusing on how you can  improve their quality of life in the time that’s remaining.

I personally thought of and carried out all the activities I could think of that would bring Ed more pleasure, such as:
  1. visiting more often, 
  2. taking my little Shih Tzu (whom he loved) to visit him, 
  3. arranging for a classical violinist to come and play a concert just for him in his room, 
  4. playing classical music on his CD player, 
  5. and taking him more stuffed animals, each of which he loved more than the one before – just to name a few.
Once I began doing these activities, my anticipatory grief lightened considerably and we had a beautiful conclusion to our 30-year relationship.

Does anyone have any other strategies that helped you deal with anticipatory grief?

About Marie Marley

Related Articles in the Alzheimer's Reading Room
  1. What is Alzheimer's Disease?
  2. Test Your Memory for Alzheimer's (5 Best Tests)
  3. 10 Things a Person Living with Dementia Would Tell You If They Could
  4. 3 Ways to Get an Alzheimer's Patient to Eat More Food

Original content the Alzheimer's Reading Room