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Surviving The Waves of Dementia Care Grief

Karen Francis's picture
Dementia caregiving

If you are caring for someone with a diagnosis of Alzheimer's disease or another form of dementia, you've certainly been sailing on a tumultuous sea of emotions. Although you may have educated yourself about the disease and what to expects as the disease progresses, we all dread the reality that our loved one will soon be gone altogether.


We may try to brace ourselves for the sadness of losing our loved one to Alzheimer's disease for the extreme loss and emotional pain that we will surely feel when they are gone. We may try to tell ourselves that when they pass it will be a blessing because they will not be suffering, but that doesn't minimize the feeling of loss of feeling lost because once they are gone, our routine and identity change.

If you are caring for someone with dementia, you are continually losing pieces of your loved one and the life you have had with them.

Each of these specific losses cause grief which comes in three phases:

1. Unfolding Grief - This grief comes as you experience many additional losses caused by the effects of the person's dementia. In some cased dementia may progress rapidly but Alzheimer's disease can be a long and insidious disease, with life span ranging from 2 - 20 years from time of diagnosis. Not only are you slowly losing a parent, spouse or friend, you are losing the role you have cherished as a daughter, son, wife, husband or friend along with the relationship you had prior to the diagnosis. You may have lost the spouse who handled the household finances or the mother who loved to make Christmas cookies with you or the father who worked on your car or projects around the house.

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2. Anticipatory Grief - A caregiver experience anticipatory grief with each passing day, knowing that there is inevitable death ahead. Sometimes there is a deep regret that no matter how well you have cared for your loved one, he or she will be facing the sunset of his or her life. It is normal to experience regret and guilt, not only when you wish this person would be relieved of his or her suffering but also when you have expectation of someday being released from your role as the care provider.

3. Acute Grief - It can be agonizing to watch the dying process as the body shuts down. Acute grief comes as the physical death takes place and you face the finality that your loved one is gone. A combination of guilt and relief come from anticipatory grief and acute grief. The situation is compounded by painful emotions and the loss of the caregiver role and sense of identity. There are also peaks and valleys in the magnitude of grief that you feel.

Among the feelings you may experience are the following:

  • After the loss, you may feel uncomfortable and may be afraid to show joy because it seems to be dishonoring the person you have lost or because you are worried about how others will perceive you if you do not behave in the manner they think is appropriate.
  • You might feel bad because deep down you are relieved that you are now finished with a very frustrating and unhappy role into which you were thrust.
  • You might also feel that caregiving was very rewarding and gave you unexpected closeness and treasured times with your loved one.

Now that he or she is gone, you may feel empty. Some people may try to encourage you to "move on". Be thankful that your loved one is in a "better place" or "It was a blessing they were suffering" an they may assure that you that "time heals". There will be days when you feel like avoiding contact with other people just so you will not have to their "helpful" advice. People's grieving experience may have similar emotions, but every experience is different.

Dementia care is not a "one-size-fits-all" plan and there are no "one=size-fits-all" reactions and grieving process that the caregiver may experience or feel. Do not treat the grief that you are experiencing as an illness or weakness. Grief is a normal and necessary response to collective loss. Grief is not the price we pay for loving someone...it is a natural and inescapable part of being a human being.



i amthe only caregiver for my 71 yr old mom