The long goodbye.
I recently watched Tony Luciani's TED talk about how his love of photography allowed him to see his aging mother in a new light. Through his beautiful photographs, he captured moments with his mother, who had dementia. These sweet moments allowed the mother and son a chance to bond before her dementia progressed. This shared memory allowed me to reflect on my relationship with my father throughout his long goodbye.
My father was a professor of sociology, a lover of travel, a ferocious reader, and an all-around character. Growing up, we had weekly lunch dates at a small Persian cafe by the school, and we would discuss everything from his childhood battle with polio to religious philosophies. He was emphatic that his children could be anything that they wanted to be except uneducated. He had eternal faith in the people he loved, even when they gave him every reason to doubt their commitments.
He was diagnosed at the age of 65 with probable Alzheimers and immediately retired and withdrew from life. He was a proud man and didn't want people to see his deterioration. Our family tried to oblige this wish, but it was complicated to watch.
He was non-verbal within three years of his diagnosis. His only friends were the couples of a local support group his wife had joined for fellow Alzheimer's patients. He would still laugh and smile when we interacted, but the man that would lecture to hundreds of students each week could no longer find his words. He enjoyed long walks, but we fought to maintain a healthy weight on him. Within one year of this, our family decided on hospice and worked to provide him with as much dignity as possible in his last days. He passed away at home, surrounded by his books and family. It was a gut-wrenching day full of lasting feelings of relief, and grief having watched his suffering end but longing for one more day.
I watched this TED talk and wished that I was able to find that same connection with my father. Tony Luciani's pictures remind me of the beauty in aging and the gift of hearing our loved one share the same story over and over. Even exhausted by it at the moment, I am grateful for them now. Those stories are vivid in my mind from the repetition so that I can share them with my children, allowing his goodby to be a little longer.
As a daughter, I selfishly wanted the man I knew to return to his full capacity to fill the role of being my caretaker. I was not a nurse when my father passed. However, after becoming a nurse, I had the honor of caring for many patients and family members who are taking their journey through dementia and Alzheimers. I found that many times, the healthcare community is strictly focused on the patient. But I always found myself taking the extra time to check in on the well being of the family members. With our dementia and Alzheimer's patients, it is vitally important that we assess the support system. Providing links to crucial resources such as respite care, technology assistance, and support groups can reduce the toll on the caretakers. We must allow a safe place for the daily caretakers to voice frustrations, seek advice, and to be heard.
Most importantly, we have to remove this stigma placed on our elderly population that life ends with this diagnosis. There are individual life decisions to be made, but one should not feel they have to hide from their regular life. After my fathers passing, I had many of his former students reach out with kind words and memories. However, the most meaningful remarks came from the neighbors who would watch out for him when he walked the dog, and the girls at the coffee shop who knew his drink even when he couldn't order it anymore, and the cashier at the grocery store who took the time to say hello to him directly even after he couldn't respond. I wish my father understood his impact didn't end with his diagnosis. Possibly that is the best message we can share as healthcare providers.
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ReplyDeleteDementia is not a single disorder, but rather, a spectrum of symptoms of cognitive decline, involving impairment in communication, memory, and thinking. The disease involves several stages that each exhibit their unique indicators and severity of symptoms.
ReplyDeleteStage 1: No Cognitive Decline. In this stage, the person functions have typically no memory loss and are mentally healthy.
Stage 2: Very Mild Cognitive Decline. This stage is used to describe normal forgetfulness associated with aging. For example, they forget names and where familiar objects were left. Symptoms of dementia are not evident to the individual's loved ones or their physician.
Stage 3: Mild Cognitive Decline. This stage includes increased forgetfulness, slight difficulty concentrating and decreased work performance. People may get lost more frequently or have trouble finding the right words. At this stage, a person's loved ones will begin to notice a cognitive decline. The average duration of this stage is between 2 years and 7 years.
Stage 4: Moderate Cognitive Decline. This stage includes difficulty concentrating, decreased memory of recent events, and difficulties managing finances or traveling alone to new locations. People have trouble completing complex tasks efficiently or accurately and may be in denial about their symptoms. They may also start withdrawing from family or friends because socialization becomes difficult. At this stage, a physician can detect obvious cognitive problems during a patient interview and exam. The average duration of this stage is 2 years.
5: Moderately Severe Cognitive Decline. People in this stage have significant memory deficiencies and need some assistance to complete their daily living activities (dressing, bathing, preparing meals, etc.). Memory loss is more prominent and may include significant relevant aspects of current lives. For example, people may not remember their address or phone number and may not know the time of day or where they are. The average duration of this stage is 1.5 years.
6: Severe Cognitive Decline (Middle Dementia). People in Stage 6 require extensive assistance to carry out their Activities of Daily Living (ADLs). They start to forget names of close family members and have little memory of recent events. Many people can remember only some details of earlier life. Individuals also have difficulty counting down from 10 and finishing tasks. Incontinence (loss of bladder or bowel control) is a problem in this stage. Ability to speak declines. Personality / emotional changes, such as delusions (believing something to be true that is not), compulsions (repeating a simple behavior, such as cleaning), or anxiety and agitation may occur. The average duration of this stage is 2.5 years
7: Very Severe Cognitive Decline (Late Dementia). People in this stage have virtually no ability to speak or communicate. They require assistance with most activities (e.g., using the toilet, eating). They often lose psychomotor skills. For example, the ability to walk. The average duration of this stage is 1.5 to 2.5 years ("What is dementia?", n.d.).
Did your father pass away soon after becoming nonverbal? Studies have indicated that once a person with dementia says six words or less per day, they have around three to live. I find this is not often the case. I've had patients live for years without speaking. In some of these cases, they did have a GT placed due to choking on food. Likewise, I've had patients eat puree food up until the day they pass away.
]Reference
What is dementia?. (n.d.). Retrieved from https://www.sholom.com/about/blog/what-is-dementia.html
As a fellow family member of an Alzheimer's disease patient, I understand the burden and stress your family endured. Although we might not consider our family member a burden, caring for an Alzheimer's patient is difficult, demanding, and affects all aspects of our lives. We suffer grief as we watch our once vital family member succumb to the disease, but we also sacrifice our own well-being for the patient.
ReplyDeleteGrabher (2018), reviews the effects on family caregivers of Alzheimer's patients. There is evidence family caregivers provide billions of hours of unpaid care every year around the world. Many caregivers give up proper food and nourishment to afford caring for their loved one.
As we age, all of us will lose some cognitive ability, but those of us without Alzheimer's disease, our brain can make accommodations for the loss. Alzheimer's patients have plague build up and tangles in the neuronal connections which block these accommodations. (Grabher, 2018).
The title of your TEDx video is accurate; Alzheimer's disease is a long and grueling disease on the patient, family, and caregivers. May you find peace and comfort knowing your loved one no longer suffers from this devastating disease.
Copy this url address into your web browser to watch a touching segment from The Golden Girls about Alzheimer's disease.
https://youtu.be/x7R3lO_GeYk
As a fellow family member of an Alzheimer's disease patient, I understand the burden and stress your family endured. Although we might not consider our family member a burden, caring for an Alzheimer's patient is difficult, demanding, and affects all aspects of our lives. We suffer grief as we watch our once vital family member succumb to the disease, but we also sacrifice our own well-being for the patient.
DeleteGrabher (2018), reviews the effects on family caregivers of Alzheimer's patients. There is evidence family caregivers provide billions of hours of unpaid care every year around the world. Many caregivers give up proper food and nourishment to afford caring for their loved one.
As we age, all of us will lose some cognitive ability, but those of us without Alzheimer's disease, our brain can make accommodations for the loss. Alzheimer's patients have plague build up and tangles in the neuronal connections which block these accommodations. (Grabher, 2018).
The title of your TEDx video is accurate; Alzheimer's disease is a long and grueling disease on the patient, family, and caregivers. May you find peace and comfort knowing your loved one no longer suffers from this devastating disease.
Copy this url address into your web browser to watch a touching segment from The Golden Girls about Alzheimer's disease.
https://youtu.be/x7R3lO_GeYk
Grabher, Barbara J. (2018). Effects of Alzheimer’s disease on patients and their family. Journal of Nuclear Medicine Technology, 46(4),335-340. doi: 10.2967/jnmt.118.218057
I am sorry you and your family had to go through this terrible time. As someone that watched my own family member go through Alzheimer's disease I know how gut wrenching this can be on the caregivers. I can't imagine how embarrassed your dad would be do have the students see him deteriorating. Individuals who are younger have even more of a social stigma associated with AD or dementia related stereotyping (Harris and Caporella 2014). Public education and awareness are the only way to get the stigma erased. People are beginning to live longer lives and with that will be some sort of cognitive decline so as retired nurses we must continue to show them how to keep their minds sharp by doing mind exercises such as reading a book aloud.
ReplyDeleteHarris, P. B., & Caporella, C. A. (2014). An intergenerational choir formed to lessen Alzheimer’s Disease stigma in college students and decrease the social isolation of people with Alzheimer’s Disease and their family members: A pilot study. American Journal of Alzheimer’s Disease & Other Dementias, 29(3), 270–281. doi:10.1177/1533317513517044
Hello Megan,
ReplyDeleteI am sorry to hear about the loss of your father. I think it is wonderful that you had the opportunity to meet with your father to have lunch dates and have discussions about life. My grandmother is similar to your father in that she is too proud to let anyone see her now that she has been diagnosed with Parkinson’s. Seeing someone you love go from being healthy and active to isolating themselves from the world can be devastating. Although it is unfortunate that you had to endure such a difficult with your father, I am sure the families that you have cared for appreciate your insight into the process of Alzheimer’s that they have to endure with their loved ones. I fully agree with you that we must end the stigma that a diagnosis is the end. Your story of your father brought tears to my eyes. It encourages me to want to be that nurse who gets to know my patient and family better so that I can provide them with the best care possible. I know respite care is a resource that can be utilized for families who have a loved one with dementia. Although respite care is readily available to caretakers, the use of respite care remains relatively low (Neville, Beattie, Fielding, and MacAndrew, 2015). I know that as a nurse I want to give my patients and families as many resources as possible. Thank you for sharing the story of your father.
References
Neville, C., Beattie, E., Fielding, E., & MacAndrew, M. (2015). Literature review: use of respite by carers of people with dementia. Health & Social Care in the Community, 23(1), 51–63. doi: 10.1111/hsc.12095