My guess is that when people read the title of this article they will react with either a, "what are they talking about? How can someone be grieving someone who is still alive and what the heck is ambiguous grief???" or a "holy crap, yes! I have felt exactly that way! Thank goodness WYG is finally covering this topic". This is one of those topics where if you have been there, you get it and if you haven't, you don't. Either way, hopefully you'll read on.
Before we dive in, if you clicked on this post because you feel like you are grieving someone with a terminal illness who has not yet died, there is another WYG article you should read before you read this article. Check out our article on Anticipatory Grief, which is about the grief that comes when we anticipate that we are going to lose someone.
In contrast to anticipatory grief, there are times in life when someone we love becomes someone we barely recognize. The person is still physically with us, but psychologically they are gone. There are a range of reasons this can happen. Some of the most common are things like addiction, dementia, traumatic brain injuries, and mental illness. If you have never lived through loving someone in such a situation, this can be hard to understand. The person you love is still there, sometimes they ‘look’ sick, sometimes they don’t. But regardless of how they look, they do things they would never have done, they say things they would never have said, treat you in ways they never would have treated you, and they are not there for you in ways they previously were. This is sometimes referred to as “ambiguous grief” or “ambiguous loss”.
This may sound very abstract, but when it occurs in your life it is very concrete and real. Your mom, who always loved and supported you, doesn’t recognize you, understand you or says hurtful things. You husband, who was always kind and considerate, is now lying and stealing to support an addiction. You son, who was brilliant and driven, is now struggling with delusions and hallucinations.
These things do not change our love for the person – we still love our mom with dementia, our husband with an opiate addiction, our son with schizophrenia. But this continued love doesn’t change how deeply we miss the person they used to be, the person we lost. We may not feel like we have the same relationship with that person – our marriage no longer feels like a marriage when one spouse can no longer remember the other. The parent-child relationship no longer feels the same when a parent has to stop protecting, trusting, or helping a child in the same way due to addiction. The child-parent relationship becomes confused when a child has to care for a parent. Though we still have a relationship with the person it has radically changed and we grieve the relationship we used to have.
Our ‘ambiguous grief’ feelings may be sadness and yearning, anger and guilt, or a range of other emotions. These emotions can become even more complicated than the grief that comes after a death when the behaviors and words of the ‘new’ person causes us to question our old memories. Or worse, they can start to consume our brains as those old memories begin to fade. Another complication of ambiguous grief is that many people don’t recognize it as grief. When those around us don’t acknowledge our grief, or make us feel that we have permission to grieve this sort of loss, that can make you feel lonely and isolated. It can be a hard type of grief to open up about because we know others may not acknowledge it.
As usual, the big question is so what?! So what that it is grief? So what do I do about it?
Ambiguous Grief Tips: what to do when you are grieving someone who is still alive:
- Remember that the present doesn’t override the past. This can be easier said than done, but it is important to remember that the person your loved one is now doesn’t change the person they were. Even if their words or behaviors now are difficult or hurtful, even if your relationship has changed and is not what it was, this doesn’t change the person they were and the relationship you had. Cherish those positive memories, write them down, create a scrapbook of old photos, whatever you can.
- Understand that the illness isn’t the person. This sounds obvious, but it can be really tough when someone you love seems like they should be the same wonderful person they always were, they’re not. Whether it is addiction, dementia, a brain injury, mental illness, or anything else, it is important to understand the illness. As much as we may still feel anger, frustration, or blame toward the person, understanding the illness can divert some of those feelings.
- Acknowledge the grief and pain of the loss. Though society may not always recognize this type of grief, it is important that you give yourself permission to grieve this loss. Acknowledge and express the pain of the loss, rather than trying to ignore or avoid the pain.
- Be open to a new type of relationship. When the person we love has changed, the relationship we have with them will inevitably change. This can feel like it is objectively and entirely a bad thing, but there is an opportunity for a new type of relationship. Will this new relationship always be easy? No. Hell no. In fact, many days it will be very very hard. But being open and seeking gratitude in your new relationship can be extremely helpful.
- Connect with others who can relate. When many won’t relate to ambiguous loss, finding a support group can be of help. There are support groups out there for caregivers of those with dementia, groups like Al-anon and Nar-anon for family members of those with addiction, and groups like NAMI who offer groups for family of those with mental illness.
Check out more on Ambiguous Loss by visiting the website of Pauline Boss, the woman who first labeled and researched this topic.
Have you dealt with ambiguous loss? Leave a comment to share your experience. Then subscribe to get all our posts right to your email.
We wrote a book!
After writing online articles for What’s Your Grief
for over a decade, we finally wrote a tangible,
What’s Your Grief? Lists to Help you Through Any Loss is for people experiencing any type of loss. This book discusses some of the most common grief experiences and breaks down psychological concepts to help you understand your thoughts and emotions. It also shares useful coping tools, and helps the reader reflect on their unique relationship with grief and loss.
You can find What’s Your Grief? Lists to Help you Through Any Loss wherever you buy books: