DEMENTIA

Dementia is a deteriorating cognitive disease which causes a significant decline in ones memory, comprehension, analytical and problem solving skills, and linguistic abilities. It causes a disfunction in an individual’s ability to function, and has adverse effects on their mental, physical, social, and emotional wellbeing. Once diagnosed, it is imperative that caregivers immediately take on the responsibility for their loved one through legal guardianship. If the diagnosis is detected at the early onset, treatments are more effective and vital to slow down the impediments and cognitive deterioration. Oftentimes, it is crucial and vital for the caregiver, if they do not have extended family members or relatives, to seek assistance and support from specialists, doctors, personal care workers, nurses, programs, treatment centres, and support networks dedicated to fostering a safe open space to educate and learn about treatments, assistance available, and proven methods to help your loved one navigate this debilitating disease.

My Grandmother at the end of her life was diagnosed with dementia, heart failure, diabetes, and sundowner syndrome. Sundown syndrome although it is paired as a factor within the realm of dementia, is a neurological disorder which creates panic, fear, confusion, delirium, and restlessness during the evening. Increased fear, agitation, and inability to sleep progresses to an extent of where it becomes aggressive — in this situation, a loved one will resort to physical violence, or emotional episodes where one is not in full control of their emotional wellbeing resulting in depression or to the furthest extent anger and aggression. Physical, verbal, emotional aggression is not caused intentionally, it is a symptom of the root cause of dementia as one looses all senses of their reality and exist within their perceived reality. Oftentimes, those that experience dementia will experience flashbacks of core root timelines within their lifetime that caused them emotional distress, heartache, fear, or intense trauma. For my Grandmother, having experienced World War II, ethnic cleansing, loss of ones own fundamental freedoms, liberty and rights, and having to escape the horrors of war, she often would have emotional outbursts expressing her deep unresolved pain that she had to unfortunately compartmentalize throughout her existence.

The emotional pain and turmoil that we experience within our lives, that we do not confront, metastasizes and festers until the mind is ready to comprehend, deal, confront, and heal our internal wounds. Psychological trauma can remain within the body causing emotional responses from a distressful periods of time which can manifest as physical or mental pain. When one experiences traumatic events, their sense of self, safety, and ability to regulate emotions becomes a barrier to help them maintain trusted coexistence in their community. Having exposure to disturbing, life altering or life threatening events affects cognitive functioning and the emotional, physical, social, and mental wellbeing of an individual experiencing the turbulence. Once cortisol takes over during fight or flight response, the bodies ability to function or respond normally to regulate real or perceived threats, sends the nervous system into overload or overdrive, eroding any regulation of calmness or peace — the body as a result, will only then feel and act as if it was in a constant state of war. Trauma is silent, as our core wounds are not exposed to the public like physical wounds. Much like dementia, the signs of cognitive decline often go unnoticed unless one recognizes the signs of the disease.

What are the signs:
- Memory loss or cognitive decline
- Trouble functioning at home or work
- Sense of severe fear, anxiety, anger, depression, or unable to regulate emotions in a healthy way.
- Unable to function with daily tasks analytically.
- Loss of interest in what they once loved.
- Avoidance or denial — they will not acknowledge that there is a problem or a refusal to seek testing to confirm early diagnosis.
- Traumatic experiences re-emerge which causes one to feel a loss of control or unable to regulate emotions.
- Delayed responses.
- Sleep disorders.
- Anxiety.
- Depression.
- Avoidance of emotion or detachment.
- Confusion.
- Persistent episodes of delusions or imaginative realities.
- Behavioural health issues.
- Chronic pain health issues which are a result of trauma.

Navigating the terrain of dementia is difficult and causes a caregiver a sense of loss as to the right response, treatments, care, and early or longterm planning. Education is fundamental during the first stages or onset of the disease, as it will provide resources to learn and manage proper care, and how to mitigate the impact of the cognitive disease on their loved ones existence. It is essential to remain at all times patient, loving, understanding, nurturing, calm, considerate, and mindful for your loved ones state, as your loved one will experience a loss of control, loss of self, which evokes fear, sadness, confusion and anger. It is essential to maintain a healthy stable environment, which has very little change — constant change can promote panic as one that suffers might be used to certain placements, routines, smells, or locations. Establishing a routine for regular healthcare appointments, a trusted support network routine checkups, regulating times for prescriptions and food are mandatory as they foster consistency and less uncertainty — enabling a scheduled routine will help the caregiver acknowledge, respond, or understand any triggers, changes, or outcomes from their care. Fostering safe and nurturing environments allows a loved one to spend time with family, friends, personal support workers and physicians which creates unity and a community of support. Maintaining routine meals, light exercise, and sleep schedules, creates activities, enhances cognitive responses, and reduces stress, which will enable a loved one to feel a sense of control. It is imperative to remember that emotional responses are caused by fear, anxiety, stress, trauma, depression, and are a symptom and not the root cause of the disease. Our loved ones do not mean to act a certain way on purpose, they are navigating a neurological disorder, which creates panic and slows their normal ability to respond, care for themselves, and may lead to further detachment and confusion. The body stores trauma like a cell retains memories, as trauma from the disease is stored and compounded.

Dementia will impair ones ability to function in daily life, and may result in confusion, misplacement of objects, loss of direction or loss of location, inability to problem solve or use analytical abilities to process a situation, unable to speak, inability to perform daily tasks such as personal hygiene or routines, personality or behavioural or mood changes, detachment, anxious, emotional outbursts physically or verbally, and significant changes to ones personality. When one is unable to regulate their thoughts, emotions, or to care for oneself, this leads to depression as one feels as though they are a burden (which they are not). Depending on which stage the disease manifests itself, it is a cognitive decline which results ultimately and unfortunately with 24-hour care and assistance. Caregivers during the process of dementia need to acknowledge that they can not handle everything on their own, they will require assistance from a trusted network or support system — if they do not, it will result in burnout, mental instability from lack of sleep or self care, or lack of personal care, or the situation might require full time professional medical assistance to supervise, provide assistance or monitoring. It is not a disease that can be easily handled, and it causes significant emotional turmoil for caregivers who have to watch their loved one in this state decline. The most important and vital advice is to ensure that your loved one is comfortable — your time and dedication is what they require most of all, for your support of love anchors them.

Give yourself the permission to honour and value the time you have with your loved one. Honour their trajectories, wisdom, experiences, and their vital generational lessons.

Give yourself the permission to mourn and grieve the loss of a loved one.

Give yourself the permission to be open to change and to allow assistance when needed.

Give yourself the permission to cry, scream, and express anger alone — embrace your emotions, it is a difficult period of your life.

Give yourself the permission to educate yourself on the disease. The more you enhance your comprehension, the more you will be able to navigate the unexpected.

Give yourself the permission to put your loved one first — it is ok to love your family, to take time off to help a loved one, to be with a loved one in their time of need. You do not have to be accountable for your choices to love and care for another.

Give yourself the permission to rest, take respites, care for yourself, and to nurture yourself.

Give yourself the permission to acknowledge that you cannot stop time, or change the situation.

Give yourself the permission to acknowledge that we do not have the power to remove anothers suffering, distress, or pain.

Give yourself the permission to say “NO” to situations and circumstances that do not serve your highest good — if someone within your network is causing turmoil during your loved ones care, or harming or agitating your loved one, dismiss the root of disturbance for inner peace.

Give yourself the permission of acceptance and to learn that life has cycles, and that our loved one will never leave us as they are part of our soul tribe spiritually. We begin to recognize and observe the cycle of life from infancy to adulthood to return back to infancy.

Give yourself the permission to acknowledge that change is constant and that we can never control uncertainty.

Give yourself the permission to acknowledge that their reality is true to them and no amount of convincing them otherwise will work.

Give yourself the permission to love again, trust again, and heal.

Give yourself the permission to forgive yourself — you are doing everything in your power to help, assist, and navigate forces beyond your control as we cannot change fate, we can only honour the time we are given.

In honour of my Grandmother I would like to celebrate her life. My Grandmother was brought into my life to demonstrate the love that I never received from my biological parents as she represented a guardian, parent, friend, and mentor. Throughout my existence, she enabled and allowed me to acknowledge that biology does not constitute or determine family, to see that women can accomplish anything they set their mind to with innovation, imagination and ingenuity, and that with patience and time one learns to evolve, love, trust, and open their heart. She anchored her light in all situations and navigated turbulences with ease and grace while extracting fundamental lessons to enable and foster forgiveness and inner-peace. Her love, compassion, patience, understanding, guidance and nature made her a defender, protector, and keeper of our generational roots, which instilled many generational wisdoms, experiences, and lessons. Through her existence, my adopted Mother and I learned the value of love, emancipation, sovereignty, fundamental freedoms, historical trajectories of our ancestors, patience, and leading from the heart in all aspects of our lives with respect, responsibility, and care.

It is fundamental and imperative to celebrate life and to honour the wisdom from our experiences as our knowledge, comprehension, and wisdom may help another along their trajectory during turbulent times. My greatest hope is that this article will speak to your heart and enable you to see that as a caregiver you will make a difference in your loved ones life, and to honour and cherish the moments you have without regret or hesitation. The time you spend with your loved one will significantly increase their longevity in life as love liberates, heals, and restores the soul through human connection.