Maintaining Hope - A Caregiver's Perspective

Being a caregiver is no easy feat. When caregivers are exhausted, a feeling of hopelessness can creep in. This might be experienced as despair or even numbness for days when a significant change or development has occurred in the care receiver’s journey.   

When I talk about hopelessness, I’m talking about that sense that nothing is ever going to be the same again, nothing will get better, a belief that you can’t imagine ever laughing or experiencing joy again because this idea seems so far removed from your current day to day experience. Your mood may be low and your demeanour flat, because you are so depleted that you have no energy left to engage fully with others.

Feeling hopeless is draining. It robs us of our light, steals our energy, our capacity to problem-solve, and our belief that there is a way forward. We can’t progress because we are paralysed. It is enough to just go through the motions of our day to day. This is common for so many caregivers, as well as those who may be receiving shocking and life changing news for the first time. Hopelessness is a normal part of many people's grief journey and it deserves to be acknowledged and validated.

Yet there is an interesting relationship between hope and hopelessness - sometimes they reside simultaneously within us and we feel ourselves fluctuating between the two. One client I spoke with described this as akin to a ride on a roller coaster - depending on the day or even the hour, she moved between hope and despair.

At times of extreme distress, we may experience hopelessness because we know that we can do nothing to change a situation or outcome; while on the other hand, our heart urges us to hang in there and hope for the best irrespective of the challenges we know are likely to lay ahead. Hope for some people is about having the courage to stay committed to moving forward, and finding some silver linings along the way.  This might come in the form of support we do not yet know is out there.

 Certainly, we might experience temporary hopelessness regarding things that are beyond our control – for instance, with a terminal diagnosis we can't refute the facts, but we can hold onto hope. This might be reflected in our attitude and behaviours, at least if we have self-agency and capacity. Hope is not about believing we can change a diagnosis, but is more about the choices we make to connect in meaningful ways, perhaps committing to a bit of levity or normality in our day, or focusing on quality interactions with others and our environment.

Hope can be actioned in how we respond to news of the diagnosis, how we make informed decisions about treatment options, or how we choose to spend the time we have left.  Hope is built upon the things we can do now, in the present, to influence our quality of life.

Some days, something may happen to knock hope out of the ballpark, but in the days that follow we can choose to re-engage with hope. This can be true for both the care receiver and the care giver. Some days are heavy with heartbreak and grief, and it is hard to find the energy to dig deep because our resources are not finite (despite what we might like to tell ourselves or what others might think).

This is often the right time to reach out to others and connect, or to enforce those boundaries and take some time for yourself. You can do this in a myriad of ways and these suggestions do not necessarily require a huge time investment – join a support group once a month, share experiences via a Facebook community group, listen to a podcast, explore reading material, sign up to a free online course, listen to music that is calming, sit in the sun every morning for 10 minutes - anything that nourishes you. Taking time for self-care increases our ability to foster hope.  

As humans it is natural for us to focus on what is wrong and what is broken. This stems from self-preservation as our brain will typically default to this.  It is when we get caught in a negative thought loop, that a downward spiral can take hold. At such times, the challenge is to observe what we are doing, decide to stop focusing on things outside of our control, and choose to do something different in how we response to the situation today. Alternatively, if you had an experience that worked out better than you anticipated, don’t forget to stop and acknowledge those moments. We tend to dismiss the positives so readily, instead of celebrating those little wins. Stay a while in the 'satisfaction stage' before moving on to the next thing on your to-do list. Cultivate those seeds of hope.

 We need to maintain hope - even in the most difficult of situations - as it is the key to our survival.  Hope is what gives people the impetus to move forward. Without hope, we completely withdraw, feel flattened and are unable to consider alternative options.

Hope is not some vague, abstract concept, nor is it wishful thinking or delusion. Yet some people treat it with cynicism or confuse it with what I call ‘toxic positivity’ which is another thing entirely. Hope is indeed a strategy which can be employed during difficult times. When we mobilise by committing to small, doable and positive actions, we choose hope. With each movement, we gain momentum, so it is possible to generate more hope as time goes on. During hard times, we need to give ourselves grace. Life is full of challenges we could never have imagined might happen to us. This is what it is to be human.

You may find yourself on a journey which brings a challenge that is not easily or quickly resolved. A marathon journey perhaps, but one that still has great value. The sum of my experiences has taught me things about myself and others I would not have otherwise known, and although I would have preferred to learn some of these lessons in a less distressing way, we don’t always get that choice.

I find hope in accepting that life is random, change is a certainty and all our challenges provide opportunities for connection and meaning making - if we are open to them.

Ground Zero Counselling understands how isolated, exhausted and polarised caregivers can feel. We offer strong support, gentle guidance and compassion so you always have solid ground on which to stand.