When dealing with grief-inducing loss, it feels awful. When that loss continues day after day without any end in sight, it can be excruciating. The term for such continuous heartache as one deals with a continually changing health situation is called “ambiguous loss”.
Both absence and presence can represent ambiguous loss. Absence is when the body is present such as a case of dementia when psychologically and emotionally the person is literally changing every time you engage him or her. Presence is when the loved-one’s mind is very much present, but the body is deteriorating. An example of this is Lou Gehrig’s Disease (ALS).
Friends and less-engaged family may not recognize the loss you are experiencing and may respond in ways that are disappointing or even unintentionally hurtful. In cases where someone who is caring for an older adult who is suffering from dementia, life can be very unpredictable and quite confusing. Coherent moments are all mixed in with unexpected or challenging behaviors. The person being cared for is often far different from the loved one we once knew. This can generate bouts of extreme sadness when the loved one is distant, confused or unresponsive. This lack of consistency generates ambiguous loss.
To survive this emotionally requires continually redefining the relationship. It takes great emotional strength to acknowledge what has been lost and try to stay present for what is the current reality. You may discover new ways to connect and interact that is meaningful and rewarding in a different way. Adapting to the loved-one’s “new normal” becomes a continuous experience.
Perhaps the positive side of adapting to this new way of thinking is that it reframes the relationship. Instead of thinking “My Mom is gone”, the reframe is phrased “My Mom is different”.
When a loved one has dementia some members of the family who are not in constant contact with the loved one experience a new level of grief with each visit. Each new stage of decline triggers this new level of grief. This cycle can be emotionally and physically draining.
Engaging a grief support group may help one process the ambiguous loss as the decline and inconsistencies in behavior trigger grief. There is value in feeling validated through sharing a common experience with others. While every person’s journey is unique being with others going through their own ambiguous loss can be a source of strength. Your local Alzheimer’s Association will have a list of local support groups.