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Having to be a caregiver while also working one or more jobs and raising a family of your own will have its consequences. The consequence of being a caregiver to someone who is even at an LTC facility is that your health and career will suffer. Opportunities and projects have to be set aside as all your hours out of the office are spent alongside your loved ones, and taking care of yourself gets relegated to the margins. I have gone to great lengths to keep out the stories and examples of those with whom I have spoken, but I am quite comfortable in sharing this: over the years, I have seen many peers disappear from social circles and jobs, and it was not until later that I found out that they were overwhelmed and burdened with the care of a vulnerable loved one. There are simply not enough hours in the day to ensure that everyone is taken care of and then to take the time necessary to look after yourself. This is why the extra effort in ensuring that your loved one is in a good LTC facility is of the utmost importance. This is not only true for the patient, but for all of the caregivers and stakeholders in their lives. If you have the choice to leave your loved one at an LTC facility for a few days with peace of mind without visiting them due to the pressures of your own schedule, you will have a semblance of an actual life, not that of a liminal one where you exist between the land of the healthy and unhealthy.
Caregivers’ diets suffer due to not having the time to make home-cooked meals, and they are stuck eating whatever they can grab at a moment’s notice. Their activity levels become uneven as they are immobile for longer hours than usual sitting beside their loved ones, and then suddenly strained when they have to bear their entire body weight while supporting them. Any semblance of exercise becomes unfathomable, for at the end of the day, they are too exhausted to do anything besides collapse onto their beds.
The real danger becomes when caregivers fall into the trap of making the caregiver their entire identity. This is one of the most depressing things that I continue to see from LTC facilities, rehabilitation centres, and hospitals – able-bodied humans ceasing to live a life and merely just living.
A Liminal Life
“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
“Illness as Metaphor” by Susan Sontag
I first read Ms. Sontag’s essay after her passing in 2004. I then reread it in every situation when I was confronted with a caregiver role for someone I cared for—again in 2006, 2010, 2016, 2017, and 2021 until now. The essay goes into the details of how we have attempted over the centuries to grasp illnesses that we do not understand, but the notion of holding two passports resonated with me every single time.
Caregivers are stuck between the land of the healthy and that of the ill. They are stuck in a state where their lives can come to a halt, suspended in purgatory, where they are absorbed by their loved one’s illness while also having to contend with the demands of the living world. Being trapped in a liminal life out of a sense of duty or guilt is a very real problem and a consequence of getting lost in the role of the caregiver who never rests.
These caregivers can be seen everywhere at LTC facilities. Caregivers with postures slanted towards the floor and thousand-yard stares burning holes into their moving feet as they slowly shuffle to and from their loved ones. Shrugs, facial expressions that silently read aloud their inner monologues, defeated language when discussing any matter, and eye sockets accompanied with dark circles similar to deep bruises from a recent accident. This posture doesn’t break even when they all have an outburst when they have reached the point of burning out. These caregivers are spouses, children, siblings and close friends of the patient who spend all of their time by the side of the patient. The danger that these people face is that, unlike medical professionals, there is no escape from their loved one’s illnesses and struggles. This is not a part of the work-life balance equation for these caregivers, but it would do them a lot of good to start viewing it as such. This is a lot harder to do when the vulnerable loved one is stuck at home, for there is literally no escape from one’s caregiving duties. Compartmentalizing one’s efforts with the patient as being separate from their life can also be helpful for caregivers who have the option to leave their loved one in the care of professionals for a period of time.
While spending time with the patient at an LTC facility, this time is usually not well spent. The time spent with their loved one can rarely be described as quality time for the patient who is unconscious or unaware of their presence. This may be difficult to read, and it may come off as cold, but facts are facts, and reaching for metaphors regarding morality in this instance will have concrete consequences. The caregivers I have seen in this position usually sit in one spot and stare off into the distance. At first, these caregivers may read or listen to audiobooks, but as the grind becomes exhausting, these periods become one of absolute stillness. These long periods are filled with mental inactivity, where the caregiver recedes into a state where all higher-level cognitive functions are at rest and waiting to be called upon. From personal experience, I have observed that this, over time, leads to higher irritability, lower concentration levels, and hampered critical thinking.
LTC facilities are environments that are not suited for the growth and maintenance of a healthy mind. Residents on all floors can be heard yelling and screaming as they struggle to make sense of their environments. For caregivers who are merely sitting beside their unconscious loved one, these loud and persistently unpredictable environments resemble torture tactics wrongfully deployed by bad actors to extract confessions and information from prisoners.
It is easy to let guilt and a sense of duty trick a caregiver into making caregiving their entire life, and as has been stated above, there are real dangers to this. If you find yourself in a situation where you are spending many hours a day, every day, just sitting beside your loved one as they sleep or as they are being confrontational, ask yourself this: if the patient had a healthy mind, would they wish for you to spend the remainder of your life wasting away? Chances are that this answer would be a resounding no and that they would wish the best for you and for you to live as full a life as possible.
As an aside, one caregiver whose marriage was best characterized by them to be built on a foundation of abuse and conflict admitted that their loved one would wish this reality on them as punishment.