The Pain of Forgetting

She has been wandering the halls, searching for her husband. Lost and worried. Where is he? Why did he abandon me here? This is the pain of forgetting.

My mother has Alzheimer’s disease. In earlier blog posts, I’ve written about her and my mother-in-law who also suffered from Alzheimer’s. For a decade, I’ve watched my mom slide down into cognitive difficulties and memory loss. For most of this time, we managed with my mom living independently. Her memory problems started small, as is the case for most people with dementia. She had difficulties remembering recent experiences. She struggled with daily life. But with family support and home health care, she continued to live independently.

Eventually, her struggles became too much. In a family decision, with her voice being the critical one, she moved into assisted living. The added support for daily activities is critical for many people. For my mom, the added support improved her physical health. And the additional social interaction also proved beneficial, at least for a while. We moved many pieces of her furniture and several family belongings into her apartment with her. Having family belongings is critical for people with Alzheimer’s. Our memories often seem to be stored in these objects. Seeing them, can remind us of our past. For people with Alzheimer’s disease, familiar surroundings also provide comfort and emotional support. Even just décor and materials similar to someone’s earlier life can support memory.

But Alzheimer’s disease is insatiable. Forever hungry, Alzheimer’s continues to eat away at a person’s memory. Most of her recent experiences and memories are quickly lost. You can see this loss when people with Alzheimer’s disease display conversational loops. They get stuck on an idea and keep returning to it in conversation. My mom’s conversational loops can vary, sometimes as long as 5 to 10 minutes and often her loops are as short as one minute. Of course, she can learn some new things. She knows her care providers, although she hasn’t learned their names. She has met and remembers our new puppy. She is excited whenever I bring our dog for a visit. Our dog is her little friend, and she asks repetitively about the dog when I visit without the puppy.

Of course, she knows she has memory problems. She’s known for a while that she is losing her memory and ability to think. It disturbs her. It hurts. Being aware of her losses is the first way in which Alzheimer’s has attacked not only her memory but also her emotional state. The pain of forgetting starts as an awareness of your losses (but don't worry too much about a few small episodes of forgetting).

But again, Alzheimer’s is insatiable. The disease is not only disrupting new memories but has begun eating into her past. Recently she started searching for her husband, looking for my father. I found her one day very distraught. She wanted to know where my father was. She wondered why he left her in this place. She didn’t know where she was. She was lost and confused and upset because of forgetting. She had forgotten something important: Her husband died 15 years ago.

I had to explain to my mother that he had died. We grieved again for my father. Forgetting led to the pain of searching for someone no longer there. Forgetting led to the pain of grieving again. Forgetting led to the pain of realizing that she had forgotten something so terrible and so terribly important.

In the last few months, we’ve had this conversation about my father’s death multiple times. Frequently, my mom asks me where my father is (fortunately, this doesn’t happen with every visit). Every time we have this conversation, we grieve yet again. We both miss my father. For her, this is a new discovery every day. For my mother, in each conversation, she suffers from learning that he died 15 years ago and from learning that she has forgotten. For me, these conversations rip off the scab that had grown over my own pain at the loss of my father to cancer. Even writing this post hurts.

And I know that my mother’s pain in forgetting isn’t unusual. Many people with Alzheimer’s and other forms of dementia experience these types of memory loss. And as these diseases progress, the diseases gradually destroy older memories as well. Of course, people with Alzheimer’s disease can still remember personal experiences. But they need help to remember. Looking at photo albums can help. Talking with someone who knows family stories can help. But as the disease progresses, the memories are lost and the ability to remember without help is also lost (Usita, Hyman, & Herman, 1998).

The memory losses seem to work backward in time. First, the person has difficulties creating new memories, then loses the last few years, and gradually loses memories further and further into their past. And thus someone with amnesia may ask for family members who have been gone for years. A friend’s father, for example, has memory losses caused by strokes. As his losses have progressed, he has started asking to see and talk to relatives who died years before. Where are they? Can I talk to my brother? When are my mom and dad coming?

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In this blog post, I don’t have a solution. I don’t have a simple way to wrap this up and tell a lesson about cognitive psychology. No matter how I approach this with my mom, she’ll continue to suffer the pain of forgetting. If I tell her dad is coming, she’ll keep searching for him and wonder why he left her. So I have decided to not deceive my mom—that causes pain, too. When I tell her my father is dead, she grieves anew and wonders why she forgot. I have no response that doesn’t hurt. The best I can do is try to make her happy in every moment I spend with her.

I’ve heard people talk about how nice it would be to forget something painful. To forget that some painful thing ever happened. Perhaps. But what I’ve seen is that forgetting is also painful.