Grief and Dementia

Many of us are aware that grief is a normal part of every loss we experience, but does grief only occur after the loss? Anticipatory grief is the form of grief that occurs when one is confronted with a chronic or life threatening illness or when one anticipates the death of a loved one (or oneself). Anticipatory grief does not substitute, or necessarily lessen, grief that occurs after the death. It is not simply grief pushed ahead in time. Please utilize this discussion group to share your thoughts and feelings.

Grief and Dementia

Postby dscowan » Fri Jan 18, 2013 7:46 am

Many of us are aware that grief is a normal part of every loss we experience. Grief and loss can occur over time Grief and loss occurs over time when caring for a loved one with dementia. With each loss, there can be a grief reaction. For many, these losses are not initially recognized at a cognitive level as grief, but are experienced at an emotional level through anxiety, sadness and depression. Increasing one’s awareness of anticipatory grief will not only help to identify this feeling, but also provide interventions which may make one’s journey a little easier.

In caring for a person with dementia, you may experience grief over the knowledge that your loved one has a disease that is progressing. He or she is communicating less and less. Despite the inability to communicate, it is important to remember that your loved one is still present. Focusing on the person your loved one is versus the losses that have incurred may help lessen the grief that you are experiencing.

One way to manage anticipatory grief is through legacy and reflection techniques. Remembering and telling old stories, looking at old pictures and listening to favorite pieces of music can often touch the person with memory loss. Long term memories, significant events and feelings of significance can be triggered. Good memories can be fuel for conversation and the stories can be passed on, keeping the spirit of the person alive for future generations. In addition, reminiscences often provide the person with memory loss with feelings of meaning and purpose. These reflections and legacies are a gift to those left behind.

Please share your stories.
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Re: Anticipatory Grief

Postby Merryl » Thu Jan 24, 2013 8:56 am

I find Dscowan's comments helpful - especially the last paragraph beginning: "One way to manage anticipatory grief is through legacy and reflection techniques. "
Even if dementia isn't the root, some who are facing earlier than hoped demise withdraw,limit activities, and are depressed. It can be difficult to reach them to focus on positive memories, etc. Showing photos of happy times may be helpful. I remind myself to watch for opportunities when my loved one is feeling a bit better/sharper, and to follow understanding that "The greatest power is often simple patience" (E. Joseph Cossman), both with myself and with my loved one during this difficult journey.
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Re: Grief and Dementia

Postby KarenH » Tue Jul 16, 2013 11:05 pm

I had a discussion today with someone wondering about the value of setting up grief counseling visits for a person with dementia living in a nursing home whose spouse recently died. While it may not hurt to have a friendly visit with a new compassionate person, we've found that often the person with dementia doesn't connect the reason for someone new walking in to talk about the person who died. Responses range from, "It's nice to meet you dear. What can I do for you?" to, "Who do you think you are? My wife is right down the hall!!" Instead, the most effective support often comes from familiar staff at the facility who understand that the person's grief is very real, and can provide validation and presence as the need arises throughout the day/night. Every situation is unique, so there are no hard & fast rules for what to say or do. In general though, experts advise validating feelings as they arise, being truthful about the death of the loved one if the person asks, and remaining present for as long as it takes for the person to feel ready to move to another topic or activity.

It's also common for people with dementia to forget entirely that there has been any change in their life, and to not demonstrate any outward signs of grief. Families & professional caregivers should accept that this is ok, and should not feel the need to force their loved one to "work through" their grief, as this can be emotionally damaging to the person with dementia. A lack of grief reactions is likely to be a factor of the dementia and not a reflection of how much or little someone cared for the person who died.

We invite you to share your experiences with this aspect of grief and dementia.
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Re: Grief and Dementia

Postby kincaid59 » Wed Nov 06, 2013 9:10 am

One of the most difficult things I’ve encountered is how to relate to the dementia patient. The attempts to bring them back to our reality can prove to be exhausting. I can remember when my father thought I was my mother. He was often confused as to where he was living and his inability to recall facts was often frustrating to me. I had this need to always correct him "for his benefit." What I eventually found out was that I was correcting him for my benefit, because he didn't realize his inaccuracies. The best thing I learned to do for myself was to let go of the need to keep him in my reality. Instead I was able to meet him in his reality, and although conversations often made little sense to me, they were smoother, he was less angry, less frustrated and more trusting and visits were more pleasant. I learned just being there was what he wanted. It didn’t matter who was right or wrong.
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