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Grief and Loss as Alzheimer's Progresses
It is common for caregivers to have feelings of loss and grief as their life is changed by Alzheimer's. You're entitled to these emotions and may start to experience them as soon as you learn of the diagnosis. Share your feelings and seek support as you go through this process.
It's normal to feel loss when you care about someone who has Alzheimer's disease. It's also normal to feel guilty, abandoned and angry.
Alzheimer's gradually takes away the person you know and love. As this happens, you'll mourn him or her and may experience the different phases of grieving: denial, anger, guilt, sadness and acceptance. The stages of grief don't happen neatly in order. You may move in and out of different stages as time goes on.
Some common experiences in the grieving process include:
- Hoping that the person is not ill
- Expecting the person to get better
- Convincing yourself that the person hasn't changed
- Attempting to normalize problematic behaviors
- Being frustrated with the person
- Resenting the demands of caregiving
- Resenting family members who cannot or will not help provide care
- Feeling abandoned
- Having unrealistic expectations with thoughts like: “I should have done...” “I must do everything for him or her” or “I must visit him or her every day.”
- Feeling bad because you’re still able to enjoy life.
- Having negative thoughts about the person or wishing that he or she would go away or die
- Regretting things about your relationship before the diagnosis
- Having unrealistic expectations of yourself, with thoughts such as: "I should have done..." "I must do everything for him or her," or "I must visit him or her every day"
- Feeling overwhelmed by loss.
- Crying frequently.
- Withdrawing from social activities or needing to connect more frequently with others.
- Withholding your emotions or displaying them more openly than usual.
- Learning to live in the moment.
- Finding personal meaning in caring for someone who is terminally ill.
- Understanding how the grieving process affects your life.
- Appreciating the personal growth that comes from surviving loss.
- Finding your sense of humor.
We Can Help
- Face your feelings.
Think about all of your feelings — positive as well as negative. Let yourself be as sad as you want. Work through your 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 your feelings. They are a normal part of the grieving process.
- Claim the grieving process as your own.
No two people experience grief the same way. Grief hits different people at different times; some people need more time to grieve than others. Your experience will depend on the severity and duration of the person's illness, on your own history of loss, and on the nature of your relationship with the person who has Alzheimer's.
Everyone grieves differently and at their own pace. If your grief is so intense that your well-being is at risk, ask for help from your doctor or a professional counselor.
- Talk with someone.
Talk with someone you trust about your grief, guilt and anger. If you decide to meet with a therapist who specializes in grief counseling, interview several so you can choose one you're comfortable with.
- 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 you relieve stress and grief, and strengthen your support network. Stay involved in activities that you enjoy.
- Join a support group.
When you talk with other caregivers, share your emotions. Cry and laugh together. Don't limit conversations to caregiving tips. Alzheimer's Association support groups take place all across the country. Find one near you. If you prefer online support, join ALZConnected, our online caregiver community with message boards.
- Know that some people may not understand your 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.
- Accept yourself.
Think about what you expect from yourself. Is it realistic? Learn to accept the things that are beyond your control. Make responsible decisions about the things you can control.
- Take care of yourself.
The best thing you can do for the person you are caring for is to stay healthy. This includes taking care of your physical, mental and emotional well-being. Create balance in your life. Do things that bring joy and comfort, and give yourself time to rest.