On Caregiving: A brief guide in taking care of your vulnerable loved ones and yourself

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Table of Contents:

Introduction:

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Over the last half-decade, I became a primary caregiver for a loved one, and as a result, I had the privilege of meeting and speaking to dozens of other caregivers, doctors and health practitioners. On top of this, I have had many conversations with people who were now middle-aged and were now starting to become aware of the fact that they may have to start taking care of their loved ones who are elderly. This article is primarily for this latter group, for every single one of them who I have spoken to approached the subject with great apprehension and fear. This was primarily due to not knowing any information on the matter. This topic requires information that most of us try to avoid looking into until we absolutely have to. To say that this is an uncomfortable subject matter is an understatement. This common state of inaction results in feeling overwhelmed to the point where indecision takes over, and unintended damage is done.

This article aims to make your life easier by giving you a roadmap for taking care of not only the people you hold dear in your life but also yourself as a caregiver. This last point is a common factor overlooked by most people, and it will be addressed in the final section of this article. First, I will point you in the direction of where to start, and then we will go over what you may encounter as the caregiving chapter of your life begins.

You may need to start thinking about taking on this chapter of your life if a loved one is in your care:

Is starting to no longer care for themselves due to old age and frailty
If an elder in your family or community is starting to lose their mental faculties
Is no longer able to care for themselves and are a danger to themselves and others due to dementia (this is a larger topic and one that has its own section)
If even if they are not elderly, but suffers from an illness that prohibits their ability to physically or mentally take care of themselves
If someone who is not elderly experiences an accident that prohibits their ability to physically or mentally take care of themselves

Throughout the article, the person in your life who will require care will be called the patient. This is done periodically as a general shorthand due to the variety of possible relationships one can be presented within this scenario.

Lastly, before we get started, I went to great lengths to omit stories, personal details and compelling examples that most literature covering this matter does. Through multiple edits of this article, I did not feel comfortable telling the very private stories of others, even with details such as their genders being changed and identities hidden. The aim of this very lengthy article is not to entertain, but to inform.

Where to Get Started and Links:

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The First Steps

The starting point for everyone on this journey will differ based on their circumstances. If their vulnerable loved one was hospitalized, then they will be fast-tracked, and there is a good chance that they will be guided along the way. If their loved one is at their place of residence and they are now starting to realize that they and their community can no longer care for the loved one, the first place to start is their family doctor. They can write a formal letter requesting at-home care or to have their name put on the list for long-term care facilities. This letter will help get the process started and add a fair degree of weight to your case for the case workers that will be assigned to your loved one.

However, as has happened countless times before, this can present multiple difficulties if your loved one refuses to go to the doctor and refuses to speak about the topic altogether. There is a greater chance of you encountering difficulties if your loved one is starting to exhibit symptoms of dementia. The stigmas around the words nursing or retirement homes can have a crushing impact on the elderly, for they see such places as the welcome mat at death’s door. This hasn’t always been the case in my experience, but it is something that you will have to navigate.

Before we get into the specifics of where to go from here, you need to know the difference between nursing homes and retirement homes. The distinction is not always clear, and the fact that it can vary based on your location does not help. As a reminder, all terms and links presented in this article are for the Canadian province of Ontario.

Retirement homes are for-profit private entities that act as full-service condos for your loved one. The residents at these facilities are usually in relatively good health and typically not in need of memory care. Those in need of memory care services require an entirely different set of services and cautionary measures, and in many medical facilities, entire floors are designated for memory care patients and residents. The downside to retirement homes is the cost. They are a lot more expensive than nursing homes, which will be referred to as long-term care (LTC) facilities from here. They are indeed more luxurious, but every single service is itemized and billed. Every single time that a nurse or personal support worker (PSW) is called to help your loved one can, and in most circumstances, will result in a cost. If your loved one has problems with their memory, this bill can be crushingly high as they keep calling on services that they do not need or that they already had earlier that day. If you are fortunate enough to have the resources to place your loved one in such a home, then it is up to you to do so. Be aware that as their health degrades, you may have to eventually start the process of placing them in a nursing home.

Nursing homes can be for-profit or non-profit and are strictly overseen by the government. These are the facilities where most people end up in the final phase of their elderly lives. Unlike retirement homes, you pay a fixed rate for the room, and most of the services are covered. Extra services such as salon and dental services are extra no matter where you place your loved one. Both homes have nurses and personal support workers on their regular staff. They also have one or more doctors who make their rounds on specific days of the week.

Since the retirement home path is a simple pay-as-you-go service, we will now focus on the nursing home/LTC route.

The Next Steps

The link provided in this article and the steps covered are centred on where I reside and where I have the greatest experience – the province of Ontario in Canada. For those residing elsewhere in Canada or other countries that also have robust healthcare systems, you can use this as a roadmap. For those who are living in countries such as the United States and who do not have the ample health coverage required for proper caregiving services, this article will act as a tool for the services which you must budget for out of your own finances and make you aware of the issues that you will face along the way.

In Ontario, we are truly fortunate that there is a website to go to if you believe that someone in your family requires more help than what you alone can provide. The link is:

www.ontario.ca/page/home-community-care

Here, you will be guided towards your first general assessment and even potentially straight to putting your loved one’s name down for a residency at a long-term care facility. If your loved one is hospitalized, the hospital will guide you toward a proper assessment and make appointments with the professionals needed when it comes time for the patient to be discharged. Furthermore, once discharged and if the patient is still in a medically vulnerable state, there may be a nurse practitioner assigned to your case. The nurse practitioner plays a vital role in the patient’s continual care outside of the hospital, which is pivotal in drawing up a roadmap for their continued care.

The General Assessment:

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Once you have come to terms that you and your household or community can no longer take care of your loved one, the first step is to get the general assessment. This is when an agent, you may get lucky and this agent has a medical background, comes to your house and does an overview assessment of your loved one’s needs. The assessment will determine whether you qualify for government-funded at-home care or if you need to start looking for a long-term care (LTC) facility.

It should be noted that there is a very real state of urgency on this matter. If you are considering to start searching for a long-term care facility/nursing home, start the process immediately. The waiting lists for desirable homes can be as long as eight years, so you will need to put your name down once you recognize that you will need such services. If your loved one is hospitalized, there is a chance that they will be put on an urgent care list, which makes this process significantly shorter, but even this can result in waiting over a year for a long-term care facility that meets your requirements and preferences. If you wait or delay this, the patient may be assigned to a long-term care facility that is both geographically far away and one that may not be the best when it comes to your goals and treatment plans.

The agent providing the general assessment will go over the patient’s:

The medical history
Medications
History of falls (usually severe falls are what starts this process)
Equipment needs (followed up with a visit of an Occupational Therapist if needed)
Physiotherapy needs (followed up with a Physiotherapist if needed)
Brief cognitive assessment (could lead to an appointment with a Neurologist)

After this, you will be assigned a case manager/community coordinator, and a home care plan will be made. This plan will outline the services you need and will be revisited every few months or when there is a significant change to your loved one’s health, thus requiring an alteration to your home care plan.

These services include the items below and much more:

Nursing services (including wound care specialists)
Personal Support Workers (PSW’s)
Physiotherapy
Occupational Therapy
Social Work

If you suspect that your loved one is suffering from early dementia, get a proper assessment done by a neurologist as fast as possible. I advise you to do so because most neurologists do not offer assessments on-site outside of their offices. Due to degrading mobility or other issues, such as an unexpected pandemic, not having a proper neurological assessment will act as a continuous hurdle during the patient’s care. This can be due to new nurses and PSWs not treating the patient correctly, for they are not able to alter their treatment if dementia is not in the file. Furthermore, a neurologist is best equipped to diagnose other illnesses that may be passing off symptoms that we, as laypeople, attribute to dementia.

At-Home Care Versus Long-Term Care Facilities:

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We all experience a large mental obstacle when it comes to placing a loved one in a long-term care facility. We all naturally feel guilty about this topic, and this is expected. Taking care of someone dear to you never feels like a burden, either until you are burnt out or if you pass the baton of being a caregiver onto someone else. Unfortunately, this results in people keeping the patient/their loved one at home for far too long, and they suffer as a result. In this section, I will outline the details which you should, at the very least, start considering looking for a long-term care centre.

Items of consideration:

Are 24/7 services needed?
Are services during the hours of 20:00-07:00 needed?
Is the patient immobile?
Can the patient offer any assistance when needing to be moved under their own power?
Is the patient obese?
Is the patient incontinent?

If your loved one requires 24/7 or overnight care, your monthly bill will either come close to what you will pay for a semi-private room in a long-term care facility, or it will easily dwarf and overtake it.

For reference, such a semi-private room at an LTC starts at around $2500 a month at the time of writing, and PSWs hired from legitimate agencies that do house visits cost around $35-40 an hour. Some of the people I have spoken to have given into the temptation of hiring non-agency workers to save some money, and there are many risks associated with this. First, they are not vetted and usually refuse to provide a police background check, which you are fully justified and entitled to ask for. If a PSW refuses to provide a police background check, consider this as a red flag. Second, they may not have the proper training and are lying. Third, you are placing your household at risk by letting in strangers who are at a higher risk of being in vulnerable positions in their lives, and on more than one occasion to those whom I have spoken; this vulnerability became a security threat to those hiring such workers in the past. Agencies that employ PSWs do the vetting process for you, and besides the initial interview, they are well worth the extra for the peace of mind that they offer.

If the patient is immobile, incontinent or obese, then you really need to take an honest stock of your own abilities. Regardless of the patient’s size or weight, caring for someone with any or all of the above conditions will result in overuse and repetitive strain injuries for the amateur caregiver, thus requiring treatment. Not only will the quality of your life outside of being a caregiver be impacted, but your ability to care for your loved one will be compromised. This will lead to greater risks of both of you getting injured. Finally, you will also need to factor in proper physiotherapy for yourself to treat any injuries which would arise from caring for your loved one. Be warned that a mild and treatable condition can easily cost more than a thousand dollars to treat over the course of many months. We will visit the care you need to address when it comes to yourself as a caregiver later in the article.

If your loved one can be comfortably taken care of with the assistance of government-funded services at home, then your care coordinator will ensure that you are well-equipped moving forward. If it is determined that your loved one requires help that only a long-term care facility can provide, then there are many steps and matters that you need to be aware of.

Choosing the Right Long-Term Care Facility (LTC):

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If you have reached this position where you are having to make the uncomfortable decision of finding your loved one a proper long-term care facility, take comfort in the fact that you are not alone. It is uncommon for strangers, coworkers, friends, and even some family members to open up about their experiences. This is due to feeling a weight of personal shame in this topic for it exposes one’s own personal vulnerabilities and that of their loved one, who they hold in very high esteem.

When the time comes, you will be instructed to select a few LTC facilities that would best suit the patient. Usually, people aim to choose the closest facility to where they reside. This poses a few issues. First, if you live in or near the core of a major city, the waiting lists for those LTCs will be substantially longer than those that are further from regions that have dense populations. Second, every patient is different and has different needs. For example, if your loved one is extremely obese, say over three hundred pounds, access to state-of-the-art and new equipment, such as modern Hoyer lifts and multiple elevators, should be some of your priorities. Luckily, we are given the option to visit these facilities not only to see their equipment but also to get a better picture of where your loved one will live for the remainder of their days. This is the biggest takeaway that you should learn from this section: you need to visit all the facilities that you are considering before finalizing your list of suitable LTCs.

Here is an itemized checklist of what to look for when it comes to selecting the right LTCs:

Distance to nearby hospitals and fire stations
Distance to nearby primary caregivers
Number of routes and traffic arteries to the LTC
The facility itself
Distance to stores and restaurants
Distance to public parks and trails

We will now go over each one of these and explore the reasons why they are to be considered.

Distance to Nearby Hospitals and Fire Stations

First, the distance to hospitals, fire stations and other first responder stations, such as the police, is important. For most of you reading this, this may be obvious. Your loved one, who is going to be a resident at an LTC, will more than likely require urgent medical attention. Though most LTCs have medical staff at the facility, their doctors are usually only on-site a couple of days a week. Given that your loved one will most likely be frail, the chances of requiring additional advanced treatment are higher than the average citizen, thus making the distance to a hospital vital in some cases. What may be a small infection for a healthy person in their prime can easily mean a month’s stay at the hospital for a senior.

Distance to Nearby Primary Caregivers

Next is usually the first item that people consider, and that is the distance to themselves, the primary caregiver. The closer the LTC, the more likely that you will visit and the less fatigued you will be from navigating traffic.

Number of Routes and Traffic Arteries to the LTC

One of the most overlooked aspects of choosing the right LTC is how many viable routes are available to and from the facility. This is important, for you have to consider traffic, construction and weather events that may make the facility either inaccessible or prohibitive to visit on any number of days. Having multiple routes which are viable in terms of traffic flow is key to getting to your loved one reliably and with less stress.

The Facility Itself

The facility itself is arguably the most important aspect and could be an entire article in itself. Newer facilities are attractive due to having better amenities, better lighting and environments that are reported as being “less depressing.” The downside is that newer facilities cost more, so your finances will be a factor in this decision.

The real benefit of a newer facility is that they typically have newer medical equipment, more modern kitchens, computer systems, elevators and security systems. Keep an eye on the quality of the beds, and how large the semi-private and private rooms are, and how large the washrooms are. Also, ask to see the showering facility on the floor. Your loved one will be showered a couple of times a week, and a robust and spacious working environment for the PSW will lessen the chances of injury for your loved one. Also, take note of how many personal items, such as televisions and miniature fridges, you are allowed to bring into the room. A personal mini-fridge is essential to provide your loved one with snacks and alternative meal options if, for some reason, they refuse to eat what is on the menu. The availability of the mini-fridge also provides you, the caregiver, options for snacks without having to resort to leaving the facility for a quick bite or a drink. Upon your visits to various LTCs, you should make a checklist of which of these factors are most important for you and your vulnerable loved one.

The staff at every LTC are not the same either. Take note of the management structure, which company the LTC belongs to if it is private, and the mannerisms of the staff when they do not know that they are being watched. A healthy and supportive working environment means that the nurses and PSWs are free to work as effectively as possible without fear of an inconsistent management structure.

Distance to Stores and Restaurants

The next two points focus on proximity to stores, restaurants, and parks. Having access to stores allows you to get your loved one any items which they may want on a moment’s notice. Being able to stop at cafes or restaurants is important, for it can offer your loved one a break if they are mobile enough to leave the facility. More importantly, restaurants and cafes afford you the opportunity to unwind for your own mental health. They are also great places to have important and uncomfortable discussions with other stakeholders in the patient’s life. No matter how wonderful the LTC is that your loved one is staying at, when things are going wrong, making important decisions within that environment is not the best. In these situations, everyone’s bandwidth is strained, and a change of environment to one that is quiet, calm and controlled is essential. I have also heard of caregivers meeting in nearby public libraries simply because of the enforced quiet and calm.

Distance to Public Parks and Trails

The proximity to parks serves the same purpose in terms of refreshing one’s mind and spirit and should not be overlooked. The unfortunate reality with this entire topic is that as a caregiver, you will be facing many difficult days filled with heartache. This heartache is going to be continual and will not cease. You will be looking at a loved one in a diminished state, and this will wear on you over time. This is especially true if the person in your care suffers from dementia, and we’ll cover this topic in the next section.

On Dementia:

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Writing on a topic such as dementia only reveals how little one knows about it, similar to one proposing to have knowledge about thermodynamics. This section is not going to explain to you the inner workings of an unhealthy human brain as it degrades. Rather, this section goes over how an unhealthy mind impacts its surroundings and how you, as one of the primary caregivers, can better navigate the alien, heartbreaking and, at times, terrifying world of dementia. This will lead us to our final section on how you can take care of yourself and other caregivers in your life.

The Obscure Nature of an Unhealthy Mind

Dementia is different in almost every case. For some, it comes on suddenly and frighteningly. For others it slowly diminishes a loved one at a pace that is imperceptible. For some, it transforms someone gentle into a torrential force of violence and abuse. For others, it subdues an assertive personality into a tender and caring presence. Unlike most other ailments other than cancer, all forms of dementia get grouped together for us laypeople, and this creates issues. We read one thing somewhere and automatically try to apply it to our current situation through brute force. Others enforce their experiences onto your situation, leading to more misery when it does not apply.

When a patient suffers from dementia, not only are their abilities to recall memories tampered with, but their sense of reality is also strained and warped. This is because much of the information that is needed to make sense of their surroundings is no longer accessible, and their cognitive faculties have decreased. This can lead to mood swings and what seem like hallucinations that result in demands from the patient.

A common perception error is that the patient has unwanted visitors at night or that they are having their belongings stolen at the LTC. In every case that I have come across, this has not been true, and the nurses and PSWs have to wade through the sea of complaints from new caregivers as they, too, eventually come to realize that these complaints are not based on reality. These hallucinations and mood swings increase in likelihood if the patient has recently awoken, for their dream state sadly fills in the gaps that their diminished mind cannot.

Bypassing Metaphors

When confronted with an illness that we do not understand or fully comprehend, humans resort to metaphors to better cope with an unpleasant reality. In her 1978 essay “Illness as Metaphor,” Susan Sontag went to great lengths to explain how tuberculosis and cancer were met with similar and contrasting metaphors relating to the role of one’s character to divine punitive measures.

The danger when facing someone who is suffering from dementia is to wrongfully blame them for their illness or to call them crazy. I have seen this happen hundreds of times, and this is the primary reason why I have left out the details of the stories people have told me and those incidents which I have seen firsthand. It can, has and does get very ugly. Just take comfort in knowing that if you find yourself having the urge to reach or rely on metaphors to explain the current situation, this is a sign of a healthy mind in an unhealthy situation where answers are not ready and may never be available. Also, remember this if you find yourself confronting another caregiver who is forcing their narrative on a situation.

Instead of attempting to attribute the illness to the person’s personality if they are being difficult or they have lost their sanity, view the patient in that exact moment and do what is best for them and yourself. In the next section which covers caregivers, I will go over in more detail the dangers of metaphors, while ironically, like Ms. Sontag, having to rely on them to illustrate several points.

Navigating an Unhealthy Mind

The danger for the caregivers of a loved one who is suffering from dementia is that they try to reason with an unhealthy mind. They try to drag the patient back to reality by, at first, talking and then eventually arguing with the patient. Patients struggling with dementia are known to be stubborn when they are having extremely difficult episodes, and this presents a problem for those with a healthy mind.

The healthy human mind has evolved in an environment where it uses reason to settle differences and to get along with others. This is the fundamental factor explaining how and why our species did not wipe itself out centuries ago. When we are confronted with someone who is unreasonable, we either find an exit from the situation or conflict arises. Due to having a personal history with the person that you are caring for, this usually escalates into conflict. Decades of preconceived notions about those close to them are brought forth by the unhealthy mind, and these are unaided by a deprived sense of reality. This is incredibly distressing and straining on a caregiver and has and will continue to wear down millions of people who only want the best for their loved ones.

These problems become amplified if the patient has a fair degree of mobility, for they can become a danger to themselves and others as their ability to ascertain genuine threats is severely hampered.

Instead of trying to reason with the patient, I have found that comforting them and providing a space of safety and support is vital. Their quality of life is what matters, not whether they currently understand their situation, for after their next nap all would most likely be forgotten. Sitting down, maintaining eye contact, using physical touch such as holding their hands, and quietly listening is the best thing one can do. Creating a calm atmosphere where your loved one feels safe and understood will go a long way toward a healthier life for everyone.

If they are calm and less combative, they are more likely to take their medication and eat their meals. They are more likely to be cooperative with the staff at the LTC or any that you have hired in your private residence. More importantly, every single caregiver whom I have spoken to has always regretted arguing with a loved one with dementia. The caregiver is left mentally and emotionally exhausted while the patient is left in a more aggravated state. Everyone whom I have spoken to has expressed feelings of being mentally and physically annihilated after such confrontations. Nothing good comes from conflict with an unhealthy mind.

During more severe episodes where your loved one is being aggressive, combative, physically and emotionally abusive, or simply making unreasonable demands, the best course of action is to leave if you can. Keep in mind that your vulnerable loved one has decades of a fragmented history to call upon, and thus, your presence itself can aggravate them. Sometimes, you can be the problem, and that is not your fault. It is best to put aside any personal pride and leave for the sake of the patient and yourself.

This is where LTCs and their staff are important. LTCs allow those of you who are trying to live a life and all of what that entails, from working and raising your own family, to be able to and not be held down by a loved one who needs around-the-clock care. I have seen dozens of people forget this while their loved one is a resident at an LTC, and this is heartbreaking.

On Caregivers Themselves:

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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.

Final Thoughts:

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There are four main takeaways from this very long article. Do not put any of this off, and act as soon as you think that your loved one will need care that is beyond the limits of what you can provide.

As tempting as they may seem, especially as you most likely will be burnt out at several points, do not take shortcuts and leave matters to chance. Do not gloss over medication lists, do not simply choose the closest LTC facility, and do not simply defer to the opinions and suggestions of others without taking a good look at the matters yourself. Choosing avenues of least resistance and maximum ease can have dire consequences for your loved one and yourself in the years to come. Your life’s chapter as a caregiver will be a marathon, and a long-term view is vital to the comfort and quality of care of those you hold dear.

Do not forget to take care of yourself and to make self-care your priority. Just like any triage scenario, you have to ensure your own well-being is taken care of first so that you can effectively take care of the ill, injured, and vulnerable. This means that you should seek help when and where you can, and you should lean on your friends, family, and systems that are in place. Not doing so out of a sense of shame or duty will only end up suffering for you and everyone in your life.

Most people whom I have spoken to admit that there were weeks when they felt hopeless, and this filled them with a dread that followed them around everywhere they went. This despair usually arises from being burnt out and sleep deprived. This will notably occur if you have had to spend a prolonged period at a hospital. When in such states, our faculties to go on long searches for information are strained, and when the resources that we require are not at hand, disheartenment settles in. The vast majority of the population will be or has dealt with exactly your situation, so it is important to remember that you are not alone. Speaking to others may at first be daunting, but in seeing how others open up, you will not only gain more resources to navigate the chapter of being a caregiver but friendships and support from previously unknown sources will make themselves known to you.

Remember, even though it may feel like it at times, you are not alone in this struggle. Lean on others and keep an open mind about the paths in front of you.

Most of all, I wish you peace in this chapter of your life.