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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.