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Anticipatory Grief When Caring For a Loved One With Dementia

Your loved one with dementia may still be alive, but you may be deep in the throes of grief already, feeling the weight and pain of the impending loss. This is called anticipatory grief and it refers to the emotional pain of losing a loved one in advance of the person’s death — a common phenomenon among people who care for the terminally ill. Support groups and other bereavement support services are in place to ease anticipatory guilt among caregivers in Alameda County and elsewhere.

Goodbyes are always painful, especially long-drawn-out ones such as those involving Alzheimer’s. Anticipatory grief for your loved one in this situation is inevitable due to the slow, incurable and progressive nature of the disease. Researchers out of Indianapolis polled 400 caregivers this question: “What is the biggest barrier you face as a caregiver?” More than 80 percent said it was the loss of the person they used to know. Anticipatory grief can hurt just as much as when your loved one dies. Sometimes, it makes the ultimate loss after death a bit easier, but this isn’t always the case. Allow yourself to feel the grief, process it and try to appreciate the time you have left with your loved one.

Dementia Grief

People who are informal caregivers for people with Alzheimer’s tend to experience a unique version of anticipatory grief — something many doctors refer to as “dementia grief”. This is when the condition affects people caring for patients with AD or other cognitive diseases. The memory loss and personality changes that a person with dementia exhibits often leave personal caregivers such as spouses or children feeling like their loved one is already gone. Despite the fact that they are still physically present, psychologically the patient is no longer the same person, which is something referred to as ambiguous loss.

From a lost sense of companionship to loss of intimacy, there are many factors that put caregivers in a sort of limbo state as they “wait” for their loved one to die. Caregivers of loved ones with dementia differ from caregivers of those with other illnesses when it comes to the opportunity to say goodbye. In someone with, say, cancer, expressions of love and the resolution of past conflicts are all possible. Not so with someone suffering from dementia, as they often lack the ability to communicate or remember.

As the caregiver, many feelings may overcome you, from anxiety to dread to sadness as you await their passing. In addition, you could feel a sense of loss and longing as your “old life” seems out of reach. You no longer have your independence and freedom because you are spending so much time caring for your loved one. These feelings can lead to guilt, anger, bitterness, and resentment points out WebMD. Just remember that these are all common, normal feelings and you shouldn’t feel bad.

Getting Help

As a caregiver who is always willing to help when needed, you may have a hard time reaching out for help for YOU. However, it’s important to know when to pick up the phone, call a friend, or join a support group. There are many other people going through the same thing you are. Here are some steps you can take to ease the anticipatory grief you are feeling:

  • Ask friends or family for help around the house as well as emotional support.
  • Try to live for the moment without focusing so much on the future.
  • Keep a journal and write down your feelings every day.
  • Appreciate what your loved one can still offer, from a smile to holding hands to giving a hug.
  • Accept that you may not always be the best person to handle your loved one’s needs. At some point, you may have to get them full-time care in a nursing facility or hire home health care professionals.

Doing what you can to ease the emotional pain of caring for your loved one with Alzheimer’s Disease is a smart step, especially since it’s been shown that those suffering from anticipatory grief are at increased risk for complicated grief. This is a more severe form of grief that affects about 20 percent of people who care for individuals with dementia, characterized by distracting thoughts, inability to accept the loss, and more.

If you’re having trouble with anticipatory grief, speak with your doctor, who can refer you to support groups, professional counseling, and other resources.

Contact Pathways Home Health and Hospice

Here at Pathways, we offer several bereavement support services for caregivers. To learn more about our support groups, workshops, and counseling, contact us at 888-978-1306. We understand that everyone grieves differently. Some do this in private, while others thrive on a network of friends and family that can meet their needs. But we have found that many people like you benefit from participation in a support group or activities with others who are also grieving.