Finding out your loved one has Alzheimer’s disease can be devastating. From the moment you learn about their diagnosis, your resilience is challenged. As you are forced to accept the new trajectory of your relationship and you are often overcome with a slew of unfavorable emotions – one of them being grief. You might be asking yourself, “how can I grieve a person who is still alive?” As it turns out, you can – it’s called an ambiguous loss.
What Is An Ambiguous Loss?
“Ambiguous loss” is a term used to describe losses that are related to presence and absence. There are two main types: a physical loss with the psychological presence (i.e. child abduction, adoption, etc.); or a physical presence with a psychological absence (i.e. terminal illness, cognitive deterioration). An Alzheimer’s diagnosis can trigger the latter.
[Tweet “Ambiguous loss is a term used to describe losses that are related to presence and absence”]
When your loved one is first diagnosed with Alzheimer’s, they are usually still very much present in both their physical and psychological state. But as the disease progresses, you can begin to feel like the emotional bond you’ve established is slowly deteriorating. No matter how hard you try to accept and adapt to the changes caused by the disease, you can’t keep from holding on to the fact that they are just not there anymore – at least not in the way they once were. Soon, they may not even be able to recognize you.
Ambiguous loss differs from traditional loss because you are unable to attain closure. It is uncertain by nature, making it incredibly difficult to understand and it may feel impossible to cope with. As a result of your confusion, this can leave you feeling stuck and hopeless. Letting this go on for too long can have serious consequences including depression, anxiety, substance abuse, and worse in some cases.
Coping With Ambiguous Loss
Since attaining closure is impossible with an ambiguous loss, getting through your loved one’s Alzheimer’s diagnosis will require you to focus on resilience with the ultimate goal of moving forward despite ambiguity and uncertainty. Here are a few guidelines intended to help you do just that.
Find meaning in your situation.
Finding meaning is really about making sense of your loved one’s Alzheimer’s diagnosis. This is the process where you figure out what exactly it is that is challenging your resilience and making it difficult for you to change.
There can be many reasons why you find the diagnosis difficult to deal with. According to Boss, resistance to change is usually a result of family narratives and traditions. When family caregivers say things like “we can find a cure and beat this” is nearly equivalent to refusing to accept what is. Another example of this is canceling traditions because they can’t be carried out exactly how they were before the diagnosis. If your loved one’s Alzheimer’s affects your loved one’s ability to enjoy huge birthday celebrations due to overstimulation, you shouldn’t cancel the birthday celebration altogether. Instead, simplify the celebration and invite only immediate family rather than the entire family.
Get comfortable with ambiguity.
To move forward, you will need to get comfortable with ambiguity. This will require you to hold on to two opposing truths. For example, being able to understand our loved one is still there and not there at the same time. Doing this will be able to help you reduce your need for closure. Getting closure may not be possible, and this is going to help you accept that.
Reconstruct your identity.
When dealing with ambiguous loss, you are going to need to be able to reconstruct your identity with the person you are losing. You will need to accept that you will be taking a new role in their life, and that it may change many times. For example, if you are the son or daughter of the person affected, you may have to transition your role into being their parent as their care needs change as the disease progresses.
When your loved one has Alzheimer’s, you may experience ambivalent feelings, also known as mixed feelings about your situation. You may love the person affected and want them to be around for a long time, yet at the same time, you want your caregiving role to end. It is important for family caregivers to recognize these feelings and know that they are normal. Taking to someone can help reduce your feelings of guilt associated with your thoughts.
Revising attachment is about being able to celebrate that your loved one is still there while being able to mourn the parts of them that are gone.
Moving forward, despite ambiguity, will require you to have hope. Bad things happen to everyone, good and bad. Having hope is about understanding that suffering is part of life. Your loved one might not be able to get better, but you can adapt and find a way to live in a new way.
Your Loved One’s Feelings of Ambiguous Loss
Keep in mind, while you are mourning the ambiguous loss of your loved one, your loved one is mourning the loss of themselves.
Upon their diagnosis, they are faced with the reality of their inevitable progression of cognitive decline. In American culture, many people define themselves by their professions. An Alzheimer’s diagnosis threatens their sense of self by slowly taking away their ability to do the things they feel define them. They are also forced to accept they will eventually fail to remember everything, including the people most important to them.
An unrecognized ambiguous loss can force you into a state of unresolved grief – leaving you with nothing but feelings of uncertainty. The uncertainty surrounding your loss can eventually extend through your entire life causing you to question everything; from your relationships to the validity of your feelings. But once you recognize that what you are experiencing is an ambiguous loss, you can begin to cope and move forward, despite your loved one’s diagnosis.
“How to Cope With The Ambiguous Loss That Comes With Alzheimer’s,” Ashley LeVine, Amada Blog Contributor.