Caregiver Grief, Mourning, and Guilt

27607spt

It’s normal to feel loss when someone you care about has Alzheimer’s disease. It’s also normal to feel guilty, abandoned, and angry. It’s important to acknowledge these emotions and know that you may start to experience them as soon as you learn of the diagnosis.

Alzheimer’s gradually changes the way you relate to the person you know and love. As this happens, you’ll mourn him or her and may experience the stages of grieving: denial, anger, guilt, sadness, and acceptance. These stages of grief don’t happen neatly in order. You’ll move in and out of different stages as time goes on. Some common experiences in the grieving process include:

Denial

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

Anger

  • Frustration with the person
  • Resenting the demands of caregiving
  • Resenting family members who can’t or won’t help provide care
  • Feeling abandoned

Guilt

  • Wondering if you did something to cause the illness
  • Feeling bad because you’re still able to enjoy life
  • Feeling that you’ve failed if, for example, you can’t care for the person with dementia at home
  • Having negative thoughts about the person, wishing that he or she would go away or even wishing that he or she would die
  • Regretting things about your relationship before the diagnosis
  • Having unrealistic expectations of yourself, with thoughts like: ‘I should have done…” “I must do everything for him or her’ or “I must visit him or her every day.”

Sadness

  • 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

Acceptance

  • 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

It’s important to take care of yourself during this time.

couple kissing

Face your feelings

  • Think about all of your feelings — positive as well as negative
  • Let yourself be as sad as you want
  • Accept feelings of guilt — they’re perfectly normal
  • Work through your anger and frustration
  • Prepare to experience feelings of loss more than once as the person with dementia changes
  • Claim the grieving process as your own. No two people experience grief the same way. Some people need more time to grieve than others. Some realize their feelings right away, while others may not grieve until caregiving has ended. 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.
  • Know that it’s common to feel conflicting emotions, such as love and anger, at the same time
  • Consider writing in a journal as a way to help you express your feelings.

Accept yourself

  • Think about what you expected from yourself. Are your expectations realistic?
  • Ask yourself whether your feelings of guilt are justified and whether you can do something differently to change them.
  • Accept things that are beyond your control.
  • Make responsible decisions about the things you can control.
  • Think about the fond memories you have of the person.
  • Allow yourself to feel good.
  • As time permits, get involved or stay involved in activities that you enjoy.
  • Turn to spiritual beliefs, if you choose, for consolation.

Get support

  • Talk with someone you trust about your grief, guilt and anger — a counselor, pastor, family member or friend.
  • Connect with other caregivers, family members and friends affected by Alzheimer’s.
  • When you talk with other caregivers, share your emotions. Cry and laugh together. Don’t limit conversations to caregiving tips.
  • 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 is still alive but terminally ill.
  • Get support from others in similar situations by attending a support group or joining ALZConnected.
Advertisements

6 Comments »

  1. As caregivers, we spend a lot of time trying to understand the emotional changes our loved ones with dementia are experiencing. But just as important to understand is the emotional upheaval we as caregivers are going through. This blog post outlines the five stages of grief, and offers coping tips.

  2. Reblogged this on The Memories Project and commented:
    As caregivers, we spend a lot of time trying to understand the emotional changes our loved ones with dementia are experiencing. But just as important to understand is the emotional upheaval we as caregivers are going through.

  3. My father was diagnosed with lymphoma in 1958, at the age of 44. As was common during those times, the doctors advised my mother not to tell him. But, after a crisis hospitalization, she did tell my brother (age 15) and me (age 11). This became a family “secret” that was never discussed. Four years later, Dad chose to go to the Mayo Clinic in Rochester Minnesota, because he did not believe (accurately) that his physicians were telling him the truth about his diagnosis. There he was told that he had lymphoma. He died within a few weeks, never having returned home.

    When my mother passed away suddenly 35 years later, all that I could think was, “She’s finally with him again; she has waited so long.” My father’s early death did, of course, have a profound impact on me. When I grieve for my parents (which I seem to do more the older I become), it is always in the context of the times our family lost with him—things like his never knowing his grandchildren.

    In my husband’s family, grieving was more intense when their mother was alive and rapidly disintegrating day by day. It is not uncommon for children to struggle with facing their parent’s or parents’ deterioration—whether it is cognitive or physical—and grieve for the loss of the person they once knew even while that person is still living.

    My husband and his siblings seemed to have a value about death that is similar to mine: As sad as it is to lose a parent, if that loved one has lived a long and good life, as my mother-in-law did, we didn’t look at death as tragic—just the natural end to living.

    In truth, whenever I know of someone of advanced age who is sick and suffering and heading toward life’s end, I always say this little prayer: “Lord, take this soul quickly and gently into the night to be with You in your heavenly kingdom and in Your perfect love.”

    • trusso599 said

      Thank you for sharing your story. We all grieve and experience end of life uniquely, and I think your comment expressed this eloquently. My sincere condolences to you and your family for the loss of your loved ones.

      • Thanks for your response. It’s nice to know when we are being “heard.”

  4. Reblogged this on What to Do about Mama? and commented:
    My father was diagnosed with lymphoma in 1958, at the age of 44. As was common during those times, the doctors advised my mother not to tell him. But, after a crisis hospitalization, she did tell my brother (age 15) and me (age 11). This became a family “secret” that was never discussed. Four years later, Dad chose to go to the Mayo Clinic in Rochester Minnesota, because he did not believe (accurately) that his physicians were telling him the truth about his diagnosis. There he was told that he had lymphoma. He died within a few weeks, never having returned home.

    When my mother passed away suddenly 35 years later, all that I could think was, “She’s finally with him again; she has waited so long.” My father’s early death did, of course, have a profound impact on me. When I grieve for my parents (which I seem to do more the older I become), it is always in the context of the times our family lost with him—things like his never knowing his grandchildren.

    In my husband’s family, grieving was more intense when their mother was alive and rapidly disintegrating day by day. It is not uncommon for children to struggle with facing their parent’s or parents’ deterioration—whether it is cognitive or physical—and grieve for the loss of the person they once knew even while that person is still living.

    My husband and his siblings seemed to have a value about death that is similar to mine: As sad as it is to lose a parent, if that loved one has lived a long and good life, as my mother-in-law did, we didn’t look at death as tragic—just the natural end to living.

    In truth, whenever I know of someone of advanced age who is sick and suffering and heading toward life’s end, I always say this little prayer: “Lord, take this soul quickly and gently into the night to be with You in your heavenly kingdom and in Your perfect love.”

RSS feed for comments on this post · TrackBack URI

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: