Grieving for Someone With Alzheimer’s Disease

It is common for caregivers to have feelings of loss and grief as their life is changed by Alzheimer’s. It is also normal to feel loss caring for someone who has Alzheimer’s disease or to have feelings of guilt, abandonment and anger.

Someone with Alzheimer’s gradually seems to disappear. As this happens, individuals and families report mourning the loss and experiencing the different phases of grieving: denial, anger, guilt, sadness and acceptance in spite of the fact that the person hasn’t actually died. The stages of grief also don’t happen neatly in order. A grieving caregiver may move in and out of different stages as time goes on. The process may also repeat itself once the person with Alzheimer’s does die.

Some common experiences in the grieving process include:
Denial

• Hoping that the person is not ill
• Expecting the person to get better
• Being convinced that the person hasn’t changed
• Attempting to normalize problematic behaviors

Anger

• Being frustrated with the person
• Resenting the demands of caregiving
• Resenting family members who cannot or will not help provide care
• Feeling abandoned and resenting it

Guilt

• Wondering what caused the illness and whether it could have been prevented by doing something differently
• Regretting interactions after the diagnosis
• Feeling bad about taking a break
• Feeling like a failure (For example, when having to place a loved one in a care facility)
• Having negative thoughts about the person or wishing that he or she would go away or die
• Regretting things about the relationship before the diagnosis
• Having unrealistic expectations with thoughts such as: “should have done…” “or must do everything or visit every day”

Sadness

• Feeling despair or depression
• Withdrawing from social activities
• Withholding emotions

Acceptance

• Coming to terms with the diagnosis and with the reality that day-to-day life will eventually change
• Finding personal meaning in caring for someone who is terminally ill
• Finding pleasure by being with the person in the moment
• Seeing how the grieving process affects life
• Appreciating the personal growth that comes from surviving loss

The Alzheimer’s Association recommends some tips for coping:

• Face feelings
  Think about positive as well as negative feelings. Be sad, work through anger and frustration. These are healthy emotions. Know that it is common to feel conflicting emotions. It’s okay to feel love and anger at the same time.
• Prepare to experience feelings of loss more than once
  As dementia progresses, it is common to go through feelings of grief and loss again. Accept and acknowledge feelings as a normal part of the grieving process.
• Own the grieving process
  No two people experience grief the same way. Grief hits different people at different times; some people need more time to grieve than others. The experience will depend on the severity and duration of the person’s illness, personal history of loss, and on the nature of the relationship with the person who has Alzheimer’s. Everyone grieves differently and at their own pace. If the grief is so intense that the caregiver’s well-being is at risk, ask for help from a doctor or a professional counselor.
• Talk with someone
  Talk with someone about grief, guilt and anger. Some therapists specialize in grief counseling, interview several to choose the right one.
• Combat feelings of isolation and loneliness.
  Caregivers often give up enjoyable activities and companionship. Make a lunch or movie date with friends. Taking a break may help relieve stress and grief, and strengthen support networks. Stay involved in enjoyable activities.
• Join a support group.
  Share emotions with other caregivers. Cry and laugh together. Don’t limit conversations to caregiving tips. Alzheimer’s Association support groups take place all across the country. Find one nearby. Online support is also available. Join ALZConnected, an online caregiver community with message boards.
• Know that some people may not understand individual grief
  Most people think grief happens when someone dies. They may not know that it’s possible to grieve deeply for someone who has a progressive cognitive illness.
• Acceptance
  Think about personal expectations. Are they realistic? Learn to accept the things that are out of reach and focus on what can be controlled and managed.

The best thing a caregiver can do for the person they are caring for is to stay healthy. This includes taking care of physical, mental and emotional well-being. Create balance by doing things that bring joy and comfort, as well as time to rest. Find ways to spend time with a loved one that keeps things present. Don’t worry about the laundry or other daily household chores. Focus on precious moments even if that means sitting quietly on the couch together. The person with Alzheimer’s is probably no longer able to keep track of time but spending it with someone they know and love can bring comfort and contentment.

For help with caregiving contact the Alzheimer’s Association at 800.272.3900 or go online to alz.org/co