How to Cope with Caregiver Grief: A Q&A with Bishop John Abdalah

Grief is a normal, healthy response to any loss or perceived change. Sometimes, when there are multiple losses, untimely losses (in the case of younger people), losses that involve loss of income or involve children, grief can be complicated. As caregivers, we mourn the losses of our loved one as they lose various physical functions, anticipate losses to come, and may become physically exhausted and in need of relief from the pain in our hearts – this may lead to conflicting feelings of our own. I wondered what my own church (Antiochian Orthodox Church) might have to say about all these feelings, so I called Bishop John Abdalah of the Antiochian Orthodox Diocese of Worcester and New England and asked if he would share some insight and advice about grieving from his pastoral experience. Bishop John is a pastoral therapist and facilitated a long-standing (20 years) grief support group in Pennsylvania. In his current role as Bishop, he continues to minister to those who struggle with grief, among other things.

Your Grace, as a caregiver, I find that feelings of grief are never far from my heart, is this common among caregivers that you have met?

When caregivers take care of people that they love, they share the losses experienced with the person for whom they care. They may experience all of the grief responses, and if they do, their feelings are as real as anyone experiencing grief due to loss of life. To complicate things, caregivers are sometimes experiencing the stages of grief on a different schedule because we are separate persons. By this I mean that even though in marriage two become one, we will still get hungry at different times, feel hopeful at different times, and are depressed at different times. This should be expected, but when one is hopeful and the other is depressed, the two will feel disconnected. This complicates our relationship with our loved one. As a condition worsens, each loss of an ability to care for one’s self is an additional loss complicating the grief. When the one we are caring for is sick for a long time, we naturally become tired. When we anticipate the loss of life, we may even begin to grieve the loss in anticipation. We call this “anticipatory grief.” This type of grief is tricky in that it comes and goes, could distract us from the time we still have together, and leaves us wondering how we are supposed to feel.

Caregivers rarely get a reprieve from their duties, and for some, when that reprieve happens it may be filled with grieving and regret as we mourn a life we never envisioned for ourselves, and our family. Is how I am feeling – and I presume others who are caregiving – normal? There is a profound sense of guilt that is associated with “anticipatory grief” – and the guilt is especially intensified because after being a caregiver for so long, you’d think that I’d be used to changes in my darling’s health status.

It is perfectly normal for caregivers to experience grief and to mourn the loss of what could have been. I expect every caregiver who reads this to know that it is typical to feel blame, guilt, anger, depression, sadness, and frustration. If you love the person you are caring for, it would be abnormal to feel otherwise. Not grieving would imply you didn’t really lose much.

The guilt associated with a caregiver’s feelings of grief and sadness may be related to the fact that we’ve been conditioned to believe that the experience of grief and grieving is only really appropriate when someone passes. This is simply not true. Caregivers – and the people they care for – experience a significant loss, and may continue to experience loss after loss as the loved one who is ill loses each function or ability. And while the person they care for may still be present, lucid, and stable – loss as a caregiver comes in many other complicating ways: loss of employment, loss of freedom, loss of “normalcy,” loss of sleep…the list goes on.

What are some of the coping mechanisms you recommend to caregivers, and how do they differ from the strategies that those who are grieving loss of life?

Some strategies for caregivers may include:

Connect with Others in Similar Situations

The benefits of engaging in a support group outweigh much of the potential pitfalls. When caregivers connect with others who are living a similar life, there is usually an unwritten understanding of the emotional, physical, and spiritual toll of caregiving. Not only can other caregivers understand because they are going through the same loss at the same time, but many have strategies to share. In addition, hearing the stories of others validate our experiences allowing us to normalize the experience.

There are many formats for support groups these days – some may be conference call types, others are online groups and forums, even social media offers users a plethora of options when it comes to support groups. Caregivers may not have the ability to get out of their house at a regimented time every week – or even every month – so, these alternatives may prove helpful.

Share Your Truth

In my experience, many caregivers are apt at dealing with complicated situations efficiently and rarely ask for help – even when they are trying to work through feelings of grief. Maybe they’ve asked for help in the past and been burned, or maybe they’ve shared some of their struggles with friends and family and have not been heard or felt supported. Males often feel that needing help is a weakness. That idea is not helpful.

If you can engage in a support group, work with a therapist or clergyperson, you may be able to get a different perspective on your feelings of grief, loss, and guilt. From there, you may expand your circle of trust and let in others who have shown a genuine interest in your life – and your struggles. Talking about grief is uncomfortable but letting people in may help alleviate some of that burden. And when people genuinely care, they will be there for you even in those uncomfortable moments.

Seek Professional Advice

Sometimes the stress, sadness, and grief a caregiver feels is too much – and this may impact our overall health and wellbeing. If depression caused by grief lingers too long and impedes your ability to care for yourself or others – or if you have thoughts of harming others or self harm – seek out advice from a trained professional, like a doctor or a therapist, immediately. If you are unable to make an appointment quickly, go to your nearest emergency room.

Similarly, if the grief is overwhelming it may cause physiological issues – heart palpitations, migraines, high blood pressure – and if you have any health conditions of your own, this high stress environment may cause your own symptoms to be exacerbated. Talk to your doctor about your feelings of grief – and how you are feeling generally. Caregivers need to take care of themselves – your life matters.

Respite is Essential

Caregivers are constantly being swallowed up by the needs of others – and that constant need to be fully present for someone else can trigger a sense of loss of self. Selflessness is a noble endeavor – but eventually, it renders the selfless person incapable of even caring for themselves. Getting away is very difficult for caregivers, but it’s essential to their wellbeing.

Do you have family or friends who can cover for you for a few hours each week? Bi-weekly? Even monthly? If you don’t have a reliable family member or friend, do you know a responsible high school student, or a local caregiver service in your area, that could come and sit with your person so that you may take a few minutes to yourself? Maybe there is a local house of worship that offers volunteers to visit with the sick or the elderly? When family or helpers come, get out of the house and do something – anything – for yourself.

Making time for yourself as a caregiver is essential to withstanding the grueling hours, and physical demands that caregiving places on the individual. Use this time to do something that gives you pleasure, helps rest your body, or alleviates some of the pressure you are constantly under. It doesn’t have to be complicated – it just must be for you.

I’d like to close out this Q&A with a question that seems cheesy, but what is one piece of advice that you feel is helpful to caregivers who are dealing with grief, and in particular – those who may not see an end to their grief?

Take one day at a time. You can’t change what happened or what will happen. We can only live in the moment we are in. Christ meets us here where we are, loves us, and loves those we love. We may not understand why things happen, but God is with us.  

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Wife, mother, writer, and caregiver. If you're here for support and caregiving life hacks, you've come to the right place.

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