Grief Before a Death

This month in my support groups, I am talking about anticipatory and ambiguous grief. I had never heard these terms before Alzheimer’s became a reality in our lives. In fact, I experienced them long before I had a label to describe them. Simply stated, anticipatory grief is the emotional pain of losing a loved one before the person dies. It involves anticipating death as well as the daily losses you experience as a caregiver. The instant a loved one is diagnosed with dementia, the caregiver starts to grieve. They are grieving the loss of someone to illness, not to death, although it can be just as intense. Sometimes this can be referred to as “mini deaths.”

Similarly, ambiguous grief is the experience of profound loss that occurs when a person is still physically present but emotionally or cognitively distant. There are many factors that put caregivers in a sort of limbo state as they “wait” for their loved one to die. Despite the fact that they are still physically present, psychologically the patient is no longer the same person.

The first time I remember feeling this type of grief we were at a doctor’s office. The nurse asked Roy a question. Typically he would have turned to me, expecting me to answer for him. For some reason this time was different. As I prepared to answer, he put together the most unintelligible strings of words I have ever heard. The nurse looked at me with a very puzzled look and I looked at Roy and thought, what the heck was that?!! That string of words set off a storm of grief within me. All I could think was, I didn’t know we were here. It indeed felt like a mini death.

Roy’s ability to communicate had certainly been waning, but I had no idea he had dropped to this level. I was deeply grieved to think my ability to communicate with my sweet husband was going away so quickly. As I look back, that was the beginning of the end of communication between the two of us. Closer to his death, he could no longer understand what I was saying nor could he form words to tell me what he needed or wanted. He wasn’t gone but it was a death nonetheless.

It was like watching a piece of my husband die every single day. Sometimes I couldn’t stand to think he was dying and, honestly, sometimes I wondered how long we would have to endure the cruelty of this disease. I often thought, if someone would tell me how long this will last, I could stand on my head to the end. Caregiving for someone with Alzheimer’s or some other form of dementia is grueling and often feels like a daily gut punch. It was both confusing and disorienting at times as I learned I was dealing with both anticipatory and ambiguous grief.