Grieving Dementia

Someone once told me, think of Dementia as a bicycle wheel. There are many spokes on that wheel, some of them are, Alzheimer’s disease, Lewie body disease, neurovascular disease, etc.  Dementia is the broad term to describe a disease that causes memory loss over time, usually encompassing changes in behaviors and ability.

Like any other disease, when a physician says, “Your (place your loved one’s name here) has dementia, we should do an MRI, your heart sinks as does the heart of the person being diagnosed.  Sometimes the diagnosis can be a relief because you begin to think, “ok, now we know what this is, let’s tackle it!”  Sadly, there is nothing that stops dementia.  Medicines simply help to manage some of the symptoms and behaviors. What is clear, however, is that the caregiver and the person diagnosed will experience grief, sometimes suffering together and sometimes suffering alone and often silently.

Pauline Boss, in her book, Ambiguous Loss, Learning to Live with Unresolved Grief, offers that perceiving a loved one as present when they are physically gone, or perceiving them as gone when they are physically present, can create feelings of helplessness, and leave one more prone to depression, anxiety and relationship conflicts. Loss is confusing and it can be difficult to make sense of the situation. Problem-solving cannot occur because there is no certainty yet about whether the problem(the loss) is final or temporary. Furthermore, the uncertainty prevents people from adjusting to the ambiguity of the loss, by reorganizing the roles and rules of their relationship with the loved one, so that the family relationship freezes in place. In a normal loss, rituals are held to honor the transition of a relationship. There are few if any rituals for those suffering from ambiguous loss. Those who witness ambiguous loss, tend to withdraw rather than reach out. Finally, “because ambiguous loss is a loss that goes on and on, those who experience it tell me the become physically and emotionally exhausted from the relentless uncertainty.”[i]   In the case of those living with dementia, a person is perceived as physically present but psychologically absent.  An ambiguous loss is a loss without finality or resolution.

A caregiver cannot understand sometimes why “I feel this way” as you watch your loved one unable to choose clothes to wear, or unable to put toothpaste on the toothbrush, or even how to make coffee.  As these losses begin, both the caregiver and the diagnosed, experience grief, though perhaps it is un-named by both.  There are multiple losses on the trajectory of this disease. Here is one person’s list and I would encourage you to make your own:

• Grief when diagnosed
• Grief as they recognize and don’t recognize
• Grief as they begin losing ADL’s (Activities of Daily Living) – bathing, walking, toileting, dressing
• Grief as the disease steals (Name your loved one) from you and (name your loved one) is unable to call you by name, and how shattered you are when the disease sometimes causes them to hit you
• Grief as they begin to stop walking, eating, drinking
• Grief when they die (in the deep sadness you feel that they are gone, of what this disease stole from you, and in the relief that they are not suffering anymore and that they are gone from our sight, but not from our hearts)
• Grief and recovery

All of these losses create pain knowing that we have an inability to resolve the situation that causes the pain, confusion, shock, and distress. We cannot make our loved one better, we can love them, help them, learn how to be with them, and find ways to address the ambiguous loss.

AMBIGUOUS LOSS AND GRIEF IN DEMENTIA, from the Alzeheimers Society of Canada, 2013 provides further information on ambiguous loss and grief in dementia and some meaningful tips for coping with the loss.  It is a informative and helpful resource for anyone who is a caregiver or a friend of a caregiver to read.

Further reading regarding grief and dementia as well as ways of coping, comes from the American Hospice Foundation, “Alzheimers Disease and Grieving Caregivers,”.

Watch for further reading on this topic in the future.

[i] Pauline Boss, Ambiguous Loss, Learning to Live with Unresolved Grief, (Harvard University Press, Cambridge, Massachusetts, 1999) p. 8.