The Unexpected Nature of Grief for Caregivers

At its most simple, grief is the way we respond to loss. It often includes intense emotions, particularly sadness and emptiness. Such emotions can be incredibly overwhelming and take time to process. 

Most conversations about grief focus on what happens after the death of a loved one and rightfully so, as the sense of loss here is typically very intense. 

Yet, grief is a response to loss, not just to death. That means it can occur with many other types of loss as well. Caregivers may even experience grief in multiple ways at the same time. 

Why is it so important to talk about grief for caregivers from this perspective?  

Because if we only ever recognize grief when it is related to death, we’re dismissing a huge part of our experience. What’s more, grief needs to be processed. Squashing it down and ignoring it doesn’t make it go away. 

Quite the opposite. 

Unprocessed grief can have serious negative impacts, often affecting your emotional, mental, and physical health.  

So today, we’re looking at some ways that grief can present for caregivers and what this grief means. 

Areas of Grief for Caregivers

Anticipatory Grief 

Anticipatory grief is when you start to feel grief before the loss occurs. This is surprisingly common, often happening when a loved one has been diagnosed with a terminal illness.  

Anticipatory grief may be particularly widespread among caregivers. After all, you don’t just know your loved one will die soon; you’re also watching their physical function decline. 

The emotional impact of anticipatory grief can also be confusing, as you may alternate between feeling grief and feeling hopeful that your loved one may survive. Such emotional variation may be even more common if your loved one’s health improves and declines unpredictably (as can be the case with dementia and some other health conditions). 

Grief For Who They Were 

Sometimes you’re not grieving the loss of a person, but rather the loss of part of who they were. 

This is especially noticeable when you’re caring for a patient with dementia. Many parts of the person’s personality may change as the disease progresses, leaving you with someone you barely recognize. 

The grief here can be tremendous and may also feel strange, given that they are still physically present. 

Cognitive disorders aren’t the only time where this type of grief happens. You might also experience it if a loved one shifts in their values or priorities, or if something else about them changes. 

Grief For a Relationship Change

Sometimes, we’re not mourning a relationship loss. Instead, we may be mourning a shift in what the relationship is or the loss of a particular relationship goal. 

For example, a couple who learns they can’t have children together will typically go through a grief period. 

The same is true in other situations, such as if your husband was in an accident and lost the use of his legs. You would likely feel some initial grief in this situation, as some of your dreams may no longer be possible. 

Caregivers for dementia patients notice this one too. Dr. David Kirkpatrick discusses some of what this feels like in his book Neither Married Nor Single.

Grief For The Loss of Dreams or Promises

Grief isn’t always associated with a person. It can occur with other types of losses too, including the loss of what could have been. 

This one often hits hard for caregivers, as the role can demand a lot of you. 

For example, you might be grieving the loss of a potential career track or promotion. Or, perhaps you’re grieving the chance to travel. 

Younger caregivers may grieve the chance to establish their lives, to buy a house, and to start growing their careers. They may not be able to take some of the steps they hope to until after their caregiving role has ended – at which time doing so is considerably harder. 

I’ve seen this one firsthand. While I don’t regret my time spent as a caregiver, there remains some grief over the direction my life could have taken instead. I found myself alone and grieving over the death of my partner in my late 20s, at a time where many my age were settling down and raising children. 

Grief For Things You’ve Lost

Similarly, you might be grieving for something you had and have needed to give up, like a job or perhaps your privacy. Some caregivers find that their relationships suffer as the result of their role (some marriages even end that way).

Many of us felt this type of grief during the height of the COVID-19 pandemic, where so many normal parts of life disappeared. 

Grief Following a Death

Finally, the death of the person you’re caring for will likely lead to grief as well. This is the most familiar type of grief, yet the caregiver’s experience can be different here too. 

Some caregivers find that they don’t grieve in the way they expect to. They might feel barely any sadness at all or may experience a strange mix of sadness and relief. 

First, unexpected responses don’t make you a bad person. They’re also not a sign of an issue – grief is simply varied and it affects all of us differently.

Besides, is complicated grief really that surprising for the situation?  

Multiple Types of Grief

As you’ve probably noticed, the types of grief we’ve discussed aren’t mutually exclusive. You might feel two or more at the same time. Or, you might switch between them as you progress through your caregiving journey. 

This could make it feel like your emotions are all over the place. You might even think there’s something wrong with you. 

But honestly, there’s a lot to process emotionally as a caregiver and doing so can be challenging. It’s okay. You have the strength to do this – even if it doesn’t always feel like it. 

What You Can Do

Each person experiences grief differently and there is no one-size-fits-all solution to healing. Still, some approaches can help, including the following.

Recognize and Accept What You Feel

Being kind and allowing yourself to grieve is easy enough when the emotions makesense, like when someone has died or is very ill. 

Doing so is harder when the grief seems unfamiliar or out of balance. 

Consider the example of grieving after your husband has become wheelchair bound. You might try to suppress this grief. After all, you have plenty to be grateful for – your husband is still alive and has his mental capacities intact. 

But, being sad doesn’t mean you’re ungrateful. You’re simply grieving, which is something you need to do. 

Regularly suppressing the grief is likely to make you more emotional. Doing so could also make it harder to appreciate the good things. 

Get Support

It’s often easier to process grief when people hold space for you. This includes recognizing and affirming the pain you feel, while allowing you to grieve in whatever way you need to. 

This type of support is most common when a loved one dies. After all, that type of grief is familiar. We all know and recognize it. 

Finding high quality support is harder when you’re dealing with another type of grief. Whitney Goodman talks about this in her book Toxic Positivity. As she points out, many people will be quick to tell you to think more positively about your situation – dismissing what you feel in the process. 

Caregiving support groups or women’s circles are good places to consider.

You may also need to talk to a therapist. Because of their training, therapists are excellent at holding space for you without bringing their own baggage into the mix. Some will even be specifically trained to help with grief, which makes them perfect for your needs. 

Take Space When Needed

You might find that you need to take space from some people, particularly any who are suppressing your grief. 

Such people mightn’t be intentionally suppressing you. They might not know how else to respond to your honesty or they might have fully bought into the positive thinking culture. 

Whatever the reason, it’s hard to grieve when people actively criticize your grief. 

Give Yourself Time

There’s no getting around it – processing grief takes time. 

So, don’t try to rush things. Allow your emotions to ebb and flow as they need to. 

Practicing mindfulness can be incredibly helpful when it comes to dealing with overwhelming emotions, including emotions associated with grief. By learning how to sit with difficult feelings without getting consumed by them, you can gain a sense of control over your emotions and experience more peace in your life.

Honor Your Own Journey

Grief presents in many different ways. Some people experience unusual symptoms, such as anger rather than sadness. Others may experience few symptoms at first, then get a sudden hit of emotions months or even years down the track. 

While some presentations of grief are more common than others, there’s no right or wrong way to grieve. You’re also not a bad person if your grief doesn’t follow the path you expect it to. 

Final Thoughts

Grief is much more than what we feel when people die. Similar emotions can arise in many other situations, including the ones we’ve talked about today. 

Understanding these other types of grief is crucial for accepting them and starting to heal. Otherwise, it’s far too easy to keep pushing the emotions aside and harm ourselves.