Creating a Resilient Response to Loss: The Special Challenge of Dementia

I’ve said many times that few things are more disorienting than the shift from being cared for by your parents to caring for your parents. The only thing that makes it harder is when your parent (or spouse) has dementia. This is quite possibly the most challenging of all situations.

Every Sunday, I allow myself the pleasure of spending time on Krista Tippett’s website, www.onbeing.org. A couple of weeks ago, I stumbled onto a podcast entitled, “The Myth of Closure” with family therapist Pauline Boss.

She’s coined the phrase “ambiguous loss,” which I find revelatory. Ambiguous loss refers to “a loss that is unclear, that has no resolution or closure”…. Where a loved one’s “status as absent or present remains hazy.”

This term applies to situations in which a family member may disappear in a tragic, unresolved event like a tsunami or terrorist strike. But, it can also apply to a family member who is lost but still present in some way. One example of this is divorce where you might be co-parenting with someone you’ve lost but is still physically there. And another is when a loved one has dementia — where you’re losing someone while he or she is standing right in front of you.

Dr. Boss calls the experience of ambiguous loss one of “chronic grief,” and she’s written a book entitled, Loving Someone Who Has Dementia. How to Find Hope While Coping with Stress and Grief.

According to Dr. Boss, there are so many things that make the loss associated with dementia ambiguous — It’s a situation that’s almost impossible to make sense of and that makes it hard to cope even with day-to-day responsibilities. Who is this person and who are you? These are questions you can no longer easily answer.

She points out that none of the usual customs and rituals that help us manage grief fit your kind of loss. Also few people in your community know how to support your loss and many will find it hard to understand the same way they would if your parent had died.

There’s something she says I love that I observe all the time, “You are on your own in a limbo that all too often goes unnoticed (or denied) by the larger community. Perhaps it is convenient for society to let unpaid family caregivers deal with dementia patients on their own.”

I’m reminded of a blog I wrote about a year ago, entitled, Caring for Aging Parents: 4 Essential Steps to Navigating Change. In it, I argue that religious and societal rituals are a way for communities to transfer psychological resilience to an individual going through a profound change. Rituals confer three essential ingredients of resiliency. They 1) mark transitions as challenging events, 2) signal the community’s recognition of your struggle as normal for the circumstances you are in, and finally 3) acknowledge that you will be okay.

In the absence of customs and rituals, we have to take charge of our own resilience and we can borrow the essential ingredients of rituals to do that. Below is an adaptation of reflections from the earlier blog, enriched by my reading of Pamela Boss’s book, which everyone going through ambiguous loss should read.

Give Yourself Ongoing Permission to Grieve

Dr. Boss says, “Before we can cope with a problem, we need to know what it is.” Amen sister.

And, she points out that the culture of the finality of grief is poisonous — especially when caring for someone with dementia where the loss and grief are complex and ongoing. The idea, conveyed by popular press, that somehow, one day we will “get over it,” is simply not true.

So, it’s enormously helpful to acknowledge and name the particular complexity that an ambiguous loss like dementia hands to you. Dr. Boss says that when you’re living with someone who is part here and part gone, you’re navigating an ongoing loss from which there is no “moving on.” In fact you are re-negotiating and re-grieving on a regular basis.

She says that this is a messy and unending process. So, “when you notice a new loss — small or large, give yourself permission to grieve it.”

Acknowledge There’s a New Normal

Your life is getting harder. Someone you love so much, your parent or spouse, is losing precious parts of him or herself and things are changing. This is just how it’s going to be from now on. There’s not anything you can do to prevent it or to stave off its impact.

On a practical level, there is real power and peace that comes from recognizing and acknowledging that there’s a new complexity to your life and that “normal” looks different than it used to.

Dr. Boss says there’s a new kind of thinking that needs to emerge here. It’s called “Both-And” thinking. It’s the practice of getting used to the paradoxical nature of life — it’s coming to the understanding that things can be simultaneously very different all at the same time.

Some examples of both-and-thinking in relation to caregiving are “She is both gone and still here. I both wish it was over and wish that she would keep on living. I am both a caregiver and a daughter and I’m connected to other people outside this role.”

Recognize New Strengths in Yourself

On an emotional level, a new sadness will now be part of your emotional fabric forever. But, it’s okay. You can handle it. As old ways of doing things die off, new ways always emerge. Going through this major transition and learning to adjust to this new normal will change who you are. But, over time you can learn to recognize the beauty and strength in this new you.

You’ve learned to let go of little things and to live more in the moment. Maybe you stood up to an authoritative doctor, or set boundaries with siblings. Or, maybe you finally forgave your mom or dad.

This is no small stuff. This is resilience and strength. These actions create new brain patterns that change who you are. And, even though the change is hard, chances are you’ll come out the other end liking this new you very much.

I will always be sad about being divorced from the father of my children…but I’ve created a little space in my heart for that sadness to live peacefully, and in the meantime, I’m pretty happy with who I’ve become as a result of going through this change.

So, as you go through this hard stuff that changes your world forever, just make sure to take the time to really congratulate yourself for rising to the challenge.