Grief and Dementia

When someone you love dies there can be overwhelming feelings of grief. This grief can be complicated if the one you love suffered from dementia prior to their death. You may even feel that you started or are starting the grieving process before death takes place. This is normal.

Death is a significant event and has its own narrative. It is important to process your experience of loss for your own healing.  One of the ways to process your grief is to ‘re-tell’ the loss that you have experienced. That ‘re-telling’ is part of the healing process.

Sometimes this re-telling takes place by talking but it can also be very helpful to write about your loss. You may find it most helpful to journal about your grief to handle it in a healthy way.


Dealing with False Guilt

You may feel guilty and not know why. This sense of guilt can be complicated by the feelings of helplessness you may have felt through the disease progression of your loved one. The process of caregiving is demanding and it is not unusual to feel guilty about not having ‘done enough’ for your loved one.

As well, we sometimes construct in our heads a story that doesn’t have a solid basis in fact. We may expect behaviour of ourselves that is above our physical or emotional capacity and feel guilty because we failed to measure up. In these cases, it is helpful to identify your thoughts and really examine them for accuracy.

An effective way to do this is to write out your thoughts and feelings and then leave them aside for a day or two. After the passage of time, read them and ask yourself — did this really happen? Is this really a fair characterization of events? You may even share your writings with a trusted friend who can help you reflect on their accuracy. Sometimes it is important to spend the time re-structuring your thinking so that you are not burdening yourself with false guilt. Working through your self-talk so that it is positive can be quite an   undertaking — but it is important.


Processing the Story

The process of dying is a story. It has meaning and impact for you and on you. It is important to be able to tell that story in a way that honours and maintains the relationship you have with the person who has died. Retelling this ‘death narrative’ helps you integrate that narrative into the larger narrative of your life. This process can be quite restorative and healing.

My mother’s death story has been important to me. I was able to work through my relationship with her and come to a place of peace. No relationship is perfect. But the love we have for the individual is an overriding factor that can help us go beyond surface irritations.

It is also important to understand that while death may end a life, it does not necessarily end a relationship. I still feel the relationship with my mom. I still interact with her in my head, consult her on occasion and share funny stories with her. I know what events she would have found funny and the events where she would have been lending a supportive arm. In many ways, I can access that relationship more quickly now than before. She is still a part of my life.


Reconstructing the Relationship

Going through the grief process in a healthy way means we are reconstructing rather than giving up our bonds with the individual who has died. There will have been points of disagreement or misunderstandings that would have been hurtful. If the hurt is very deep, it may be useful to re-write some of the dialogue to come to a place of peace.

Psychologists experienced in grief processing often recommend individuals go past the words to the deeper feelings. Individuals often lash out or say hurtful things from a place of their own pain. An individual who is experiencing the effects of dementia may focus their frustration, anger or fear of the disease on those closest to them.

It is common for things to be said which are not accurate and would not be said but for the disease. You may find it helpful to re-write those dialogues and replace the angry words with words that express the vulnerability of the individual. This replacement helps us understand and feel compassion for their suffering. We become closer to them.


Finding Peace

In order to come to a place of peace, it is important to work through the reality of a changed future. Your life will be different now that the person you loved is no longer with you. It is still important though to foster a sense of connection that is sustaining and nurturing to you.  It is normal that death can bring with it feelings of guilt, anger and abandonment. There is a shared life that precedes the death of the individual, and death can leave one feeling abandoned. Working through your grief is an important part of the healing process. It takes time but it is worth doing. In the end you will have been able to integrate the life and death of your loved one into your own life story in a meaningful way.


As one of the founders and creative minds behind Fit Minds Inc., Nicole has been creating cognitive stimulation therapy programming since 2010. An experienced curriculum developer, teacher and coach, she brings a wealth of experience to creating and teaching the Fit Minds Program. Nicole has trained hundreds of professional and family caregivers who have touched the lives of thousands of individuals living with a cognitive impairment. Nicole also holds a law degree from Osgoode Hall Law School, a Master’s in Law from Queen’s University specializing in Negotiations and is a Certified Professional Consultant on Aging.

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