The challenges of caregiving are often underestimated by people who haven’t been in the role themselves. This is partly because many of the most challenging components are not immediately obvious on the outside and can be difficult to explain.
For one thing, it isn’t the tasks of caregiving that are difficult (even though they can be challenging). A more significant component is the way that caregiving is ongoing – minute after minute, hour after hour, day after day.
As a caregiver, it can be difficult to have any life of your own. Even just having moments to yourself can become a luxury.
A component of this is hypervigilance.
This can be described as a state of heightened awareness. One where you’re always on alert, keeping an ear out for what might go wrong next. The process often means that we cannot relax, even when we do have the time and space to do so. This becomes so normal that after a time we don’t even notice it.
I remember this so significantly after the death of my partner, who I was caring for. He had grown increasingly dependent on me over time, to the point that he could do barely anything on his own. I always had an ear out for him calling me, at any time of the day or night. I learned to bolt upright and run, regardless of what I was doing. His calls weren’t always urgent, but I never knew which were and which were not until I was at his side.
In a word, it was exhausting.
I wasn’t even falling into deep sleep, as I was always keeping an ear out. It was rare for me to get even five hours sleep without being woken at least once, let alone seven or eight.
I noticed the impact most when he was no longer there. For months I was jumping at every sound, then realizing that there was no one who would be calling for me. It took a long time to learn how to relax.
Hypervigilance is just one outcome of caregiving, one of many. It is one answer about why caregivers are so stressed. The fact is that caregivers suffer immensely. Our physical health is often compromised, not to mention our mental health.
One of the biggest physical impacts for me was weight. I gained weight as a caregiver, simply because I had no time or energy to eat well. When everything you have is being poured into another person, finding enough to care for yourself often feels impossible.
I don’t know how much weight I gained, but I have lost around 90 lbs since that point and have regained most of my physical health. I suspect there were some long-term negative effects. But, I’m young (31) and was only a caregiver for five years, so I was spared the worst of it.
As many authors have noted, caregiving is associated with chronic stress and long-term emotional pressure that can cause significant damage.
Yet, when we’re caregivers, we often don’t take this into account. We don’t realize how much is being asked of us and the toll that it takes. Instead, we often feel that we’re not doing enough or that we’re failing somehow.
In reality?
Caregivers are superheroes. Truly. The amount of stress and struggle is dramatic, even for situations that don’t look so bad on the surface.
This is why caregivers need to be kind to themselves, why they need to give themselves credit for what they do and the hours that they put in. I know that it often doesn’t seem like enough.
Trust me, I know the helplessness that can come with caregiving. But, the situations that we’re in don’t have easy solutions. Much of the time the person we care for is going to get worse over time, no matter what we do. That’s the nature of aging and conditions like dementia, not to mention many other health issues.
All we can ever do is our best. It won’t always seem like enough, but it is. It has to be.
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