Anticipatory Loss, Grief, and Dementia

Some have called Alzheimer’s disease “the Long Goodbye;” because of the gradual decline people with the disease experience, those close to them feel as though they’re losing them little by little over many years.  Caregivers can become trapped in a cycle of grieving as the disease progresses and they mourn new losses.  Because  loss and disability have a significant impact on the daily life of a care team, grief is a fact of life for many Alzheimer’s families.

“Anticipatory grief” refers to the complicated emotional process that can take place in people who are expecting the death of a loved one.  These feelings can be just as powerful as those experienced after the death of a loved one, and can be a tremendous weight for a caregiver to carry.  Anticipatory grief can include many of the same stages as grief that occurs after a loss.  How many of us have seen a caregiver respond with denial to news of a loved one’s illness?  Or anger, or depression, or even bargaining, thinking that the right alternative treatment or intervention may bring the person they knew back to them?  The difference might be that with anticipatory grief, the loved one’s continued decline makes it difficult to cope with this type of grief – once you’ve come to accept their level of impairment, they suffer another loss.

Because this type of grieving isn’t as widely recognized, these feelings or a caregiver’s reaction to them may be misunderstood.   Caregivers often feel guilty about emotions like anger, not having a framework for accepting their anger as part of the very natural process of grieving.

The emotional work of caregiving is difficult, and caregivers must be gentle with themselves and practice good self-care in order to remain emotionally healthy.  Feelings like anger or resentment – towards the disease, the situation, even toward the person with Alzheimer’s – are natural.  Allow yourself the kindness of absolving yourself from guilt for having these feelings, and find a healthy outlet for expressing them.  Also know that you will make mistakes, you will have moments where your grief gets the better of you, and forgive yourself for the times you don’t meet your own expectations.  Be patient with yourself, and try to be sensitive to your own feelings so that you can recognize when you’re having a bad day and provide yourself with the necessary support.

Make your own mental and physical well-being a priority.  Make time to keep regular appointments with your doctors, work within your budget and schedule to eat as healthy a diet as possible.  Exercise not only to preserve your health, but also to cope with the stress and anxiety of caregiving.  Schedule regular breaks from caregiving, where you can have time for yourself to reflect and process some of these difficult emotions.

The time and space we recommended above may seem like an impossible luxury, but it may be more readily available than you think.  Many caregivers are reluctant to reach out to family and friends for support, or feel guilty that they can’t meet all their loved ones needs alone.  If you were mourning the death of a spouse or parent, it would be considered totally reasonable to accept help with the responsibilities of caring for a young child, so why shouldn’t a person who is struggling with anticipatory grief not also receive support in meeting the significant care needs of a person with dementia?  The second scenario is less familiar to some, but the feelings involved are no less powerful.

It can be very therapeutic simply to know that you’re not alone, to hear from others who struggle with the same feelings.  Alzheimer’s Texas maintains a network of dementia caregiver support groups throughout Central Texas, and we highly recommend that people caring for a person in any stage of any type of dementia attend a group in their area.  Caregivers who attend a group not only learn practical solutions to common challenges, but also learn that their feelings aren’t unreasonable or atypical.  This can help caregivers not only identify grief-related emotions when they arise, but also reduces the need to repress or deny these emotions, and allows caregivers to process their grief more effectively.

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