Without acknowledging the unique difficulties you face, it’s hard to maintain emotional health. Alexandra Drane, Co-Founder and CEO of ARCHANGELS, describes how this truth impacts caregivers in particular: “Most caregivers rarely truly share the extent of their suffering, even when being a caregiver is almost killing them–literally.”
There’s a real difference between complaining and naming the real pressures on your own wellbeing. Being a caregiver is objectively bitter-sweet; when we acknowledge the bitter, we’re not denying the sweet.
This article shares firsthand perspectives from fellow caregivers who have bravely voiced their feelings in public. Take courage, and know that it’s ok to feel the way you do. Shame has no place here!
Valid feelings that caregivers are hesitant to name
Caregivers may feel uncomfortable voicing the very valid feelings listed below, which deserve to be named. When we express our frustrations about caregiving we can be shamed by others for how we feel. Especially when we are caring for a family member, this job is seen as our inherited duty/responsibility, and one that we are not allowed to “complain” about.
In a job where we give so much to those who we care for, it is normal to feel frustrated about our role as a caregiver.
Caregivers are so often underappreciated, taken for granted, and overburdened with endless tasks and obligations. There are times when our loved ones lash out at us, dump their anger about their conditions on us, and blame us even when we are doing our best. Like in any other situation, when someone treats us unfairly, it’s understandable for us to feel angry, frustrated, or want to snap back.
To top it all off, there are times when the people who we are caring for to don’t seem to care about their own wellbeing. We end up convincing them to accept help over and over again, or we have to help them even when they don’t want us around.
One caregiver gives voice to the role’s potential unpleasant reality: “I hope and wish that my wife’s dementia had brought us closer together. It hasn’t. In fact, she blames me for her present limitations, weeps, complains, hits me and does little (in my opinion) to help herself. While I realize this behavior is all disease-inspired, it has become increasingly hard for me to not feel anger, disgust, and resentment.”
“Apathy in caregiving is common. Aging parents, spouses, and loved ones put little effort into helping the caregiver help them. Little motivation exists to do anything without encouragement.” – Pamela Wilson, caregiving advocate
There are countless reasons why we experience loneliness as caregivers. Caregiver loneliness has layers.
We are the captain of the ship making decisions by ourselves; we spend so much time caregiving that we don’t get to socialize; or our non-caregiver friends and family just don’t understand what we go through.
We can also grow to feel disconnected from the people in our lives who don’t value our work, and the ones who could help share the caregiving load but don’t.
Even when we find ways to take breaks from caregiving, thinking about our loved ones can prevent us from fully engaging in the present moment. Being a caregiver can feel like a wall, preventing you from genuinely connecting with others.
“I know I’m not the only one going through this, but it certainly feels that way in those lonely moments where someone caring for Dad is looking at me for what to do next. Or worse, when Dad himself looks at me that way.” – Lindsay Perrin
“Been living with my 83 year old mother for over three years and it’s a lonely and isolating job. My brother isn’t any help. My husband has been my lifesaver. We rarely go out by ourselves because it is just sooooo hard to find someone who has the time to come in and stay with mother.” – JD Tugar
“I’m using again, because no other coping tool is working.”
“These individuals are almost certain to experience a wide range of emotions, such as anger, frustration, exhaustion and sadness, that can cause a great deal of stress.” – Bobbi Carducci
When we feel overwhelming pain while caring for a sick or dying loved one, our stress increases exponentially. This increased stress can magnify other pains associated with caregiving, creating a runaway cycle.
It makes sense that caregivers can struggle with substance use as a coping mechanism when they are burning out, frustrated, and lonely. What is a person supposed to do when the positive coping mechanisms just aren’t working?
Honestly stating that we are struggling with substance use is an overall taboo topic, especially for people whose job is caring for others. There can be a fear that people won’t see us as good at our jobs or would question if we are fit to do what we do.
Gregg is a caregiver who posted his story at Archangels.me. He acknowledges multiple difficult realities in a short quote: “I prayed for her to pass away and then she did. The pain of watching is gone but many scares remain. I struggled with substance abuse for a while.” Gregg is not the first or the last caregiver to struggle with substance use.
It’s scary to talk about because of stigma, but talking about your struggle doesn’t take away from the incredible work you do.
“This job is destroying my wellbeing.”
“As most caregivers do, we put our health issues on the back burner while attending to theirs. The physical, psychological and emotional demands are beyond measure. Those stressors do much harm to our bodies and our psyche.” – Vincent
“Often it was a question of getting my mother up to go to the bathroom, or maybe getting five hours of sleep and doing three extra hours of laundry the next morning because she wet the bed…I thought I would lose my mind from exhaustion. It felt like I had two people in my head all the time, as I was thinking and acting for her every need.” –Jessica Newman, Istanbul
“I failed the depression screening in February of 2017 and was told by my doctor I needed to commit myself. I couldn’t because not one family member could commit to taking time off from their jobs to help my mom.” – Martha White, Arkansas
“I wish this responsibility would come to an end, despite what that would mean for my loved one.”
One of the most difficult feelings to grapple with–and admit to–as a caregiver, is that we want our job to end. Whether we are caregiving as a paid job or for our own loved one, it’s equally valid to feel totally over it.
Caregiving can be exhausting, fatiguing, emotionally overwhelming, and painful. We have to watch our loved ones suffer and pour our resources into helping them above all else. When we are burning out both physically and emotionally, we wish that our responsibilities could come to an end.
“Eventually, it became apparent that none of us could provide the daily care Mom needed and that she was no longer safe at home alone. As the one with the durable power of attorney, I made the difficult and unpopular decision to put mom in a nursing home.” – Terri, 60
Caregivers are often guilted for expressing any of the downsides of their job, and being sick of the job altogether despite what that would mean for their loved one is the most taboo of all. For some, the end of caregiving looks like their loved one living with someone besides themselves, moving into an assisted living facility, or a nursing home for an elderly family member. In other instances, the end of everybody’s suffering comes about when our loved one finally passes away.
“I couldn’t help but feel relieved to say a final farewell to the stranger she had become. And I was thankful that she no longer had to live with the weight of this disease bearing down on her. We’d both been beaten down and exhausted, but now the nightmare was over, for both of us.” – Dayna Steele
Wanting to stop caregiving, or wishing that your loved one would die so that everybody’s suffering could end doesn’t make you a bad person or a terrible caregiver. It’s understandable to be sick of what makes us feel sick ourselves. Caregivers deserve the space they need to be honest about how they are actually doing and what they are actually thinking.
“Caring for someone while dealing with all your sadness and grief is extraordinarily hard, and having friends, family or professionals to talk to can help.” – Susannah, 34
If you’re a caregiver who relates, reach out. There’s a safe space to talk about anything, anytime here.