Fran's Story
I wrote the following in the fall of 2011 when my aunt Francine was in the late stages of the disease. I want to share it with others to help decrease the stigma that Alzheimer's disease carries with it, which inevitably adds to the pain and loneliness that families already experience as they watch a loved one fade away. It is my hope that instead of the denial that occurred with Fran, her story may start a dialogue about dementia so that families can create an effective communication plan before language is gone completely. Fran has left us but she is not forgotten. I dedicate this website to her memory so that her experience may help others impacted by this horrible disease.
My aunt Francine was a strong, independent, professional woman, a self-starter who moved across the country to southern California from Rhode Island to further her career as a registered nurse. She worked in the San Diego area as a visiting nurse, a high stress job with the extra demands of travel, large amounts of paperwork, and coordination of care between other visiting medical professionals. In her mid-50s she began to struggle with her work responsibilities. She, as well as her family and friends, all attributed these new difficulties to the stress of her career. She was under a great deal of pressure, getting older, and for someone whose job was so demanding, it wasn’t entirely out of the question that her performance was suffering.
It was shortly after this time that Fran married her husband Kent, a retired Lt. Colonel in the Air Force, and computer programmer for the NASA jet propulsion lab. She left her job in San Diego and moved to his home in Simi Valley. They were comfortable financially and because she was under so much stress from her job demands previously, she decided to take an early retirement.
On Fran’s sixtieth birthday, she and her three sisters celebrated with their decennial birthday trip to San Francisco. My mother flew in for the celebration and it was upon arrival at the hotel, when Fran unpacked her suitcase, that my mother noticed something unusual. Fran’s suitcase was poorly packed, and the clothes didn’t make any sense for the type of weather in San Francisco. My mother also noticed that Fran was repeating many of the same questions, and could not remember the itinerary. She’d ask multiple times “What’s the plan for today?” even after the question had been answered. It was unusual, but Fran never admitted having any problems.
Fran’s husband Kent attributed any differences to just being part of her personality. My mother spoke on the phone with Fran regularly but it was difficult to ascertain any real, concrete issues over a long-distance phone conversation, and Fran still never admitted that she had any problems. Maybe it was avoidance, but it struck my mother as odd. After all, it was Fran who had the experience in the medical field, and it was Fran who consulted the neurologist and coordinated all the treatment when her mother (my grandmother) developed vascular dementia following a stroke later on in her life. Surely she would be able to recognize whether she was having problems with her memory and would convey this concern to her family, but this was not the case.
A year and a half passed before the extent of Fran’s decline became fully apparent and her independence was compromised. She drove until one day she had the keys but couldn’t remember how to start the car. It was at this time that she and Kent went to the see a neurologist and, based upon her history and symptoms, Fran was diagnosed with early-onset Alzheimer’s. According to my mother, the geriatric neurologist that they saw seemed “laid back” about treatment. It was assumed that life would go on as normal for as long as possible without letting the disease become the sole focus of their lives. Treatment was minimal and limited to medications. Fran was put on Aricept (Donepezil) as well as a number of other medications to control mood and hallucinations caused by sundown syndrome. Kent continued working as long as he could while Fran stayed at home. There was no improvement in her condition and the medications given were unable to stop the inevitable decline in cognitive function caused by Alzheimer’s disease. While there was an Alzheimer’s adult “daycare” program in the area, all of the patients were 80+ years old and in the advanced stages of the disease. It was too difficult for Kent to put Fran in one of these programs. She was only 62 at the time.
Kent has since retired from his job is now a full-time caregiver for my aunt. He is involved in an Alzheimer’s caregiver support group where they discuss the challenges of caring for a loved one with dementia. The biggest challenge has been my aunt’s steady decline in language and inability to communicate or interact with loved ones. Unlike others who exhibit belligerent or confused language, my aunt has been in decline towards mutism. In a conversation with my mother after a support group meeting, Kent stated that, “These people are talking about [their family member] being argumentative and combative. I’d just like her to talk!” Fran has been mostly non-conversant for three years, although with prodding my mother can usually elicit a one word response, such as an answer to a yes or no question, when speaking on the phone. She does not communicate with others, and does not make eye contact, although will occasionally giggle along with Kent when he laughs.
Family life has been drastically impacted. Kent tries not to isolate himself, but being a caretaker is a full time job. He has retired from his job and given up his position on the board of directors of his church. While he’s still able to go out shopping and run errands, there is very little socialization outside of the family and people from church. Their plans after Kent’s retirement were to travel and enjoy their golden years together. They have found that Alzheimer’s has no respect for plans. While they do get to travel a bit, vacations are limited to short trips with family members. All family lives out of state, and the distance makes it difficult for everyone involved. My parents and other aunts visit as often as they can, but this is usually limited to a couple of times a year. Fran’s tendency to wander has made doing things outside the home difficult. A simple activity like dinner at a restaurant has become a challenge without advance planning and other family members around to help. Alzheimer’s is a lonely disease, not only for the person with the disease, but also for the person’s loved ones.
There are some moments of “still Fran”, though. Last April my parents went to Big Bear, CA with Kent and Fran. Fran was nonverbal at this point, but my mother was having a one-sided conversation with her while they were walking down the main street. They passed a tattoo parlor and my mom suggested in jest that they both go in and get tattoos, to which Fran responded “Oh my God, no!” It’s apparent that however infrequent, there are still moments of lucidity. She’s usually fairly easy going, but she does have times of anger when my mom is trying to help her with dressing or showering. That’s the old Fran, a capable woman who wants to maintain her privacy and independence. At the age of 65, she is now in the late stages of Alzheimer’s disease. The disease has affected her stature; she has lost thirty pounds and is very frail. My mother tells me that she’s still Fran, but less and less every day.
My aunt Francine was a strong, independent, professional woman, a self-starter who moved across the country to southern California from Rhode Island to further her career as a registered nurse. She worked in the San Diego area as a visiting nurse, a high stress job with the extra demands of travel, large amounts of paperwork, and coordination of care between other visiting medical professionals. In her mid-50s she began to struggle with her work responsibilities. She, as well as her family and friends, all attributed these new difficulties to the stress of her career. She was under a great deal of pressure, getting older, and for someone whose job was so demanding, it wasn’t entirely out of the question that her performance was suffering.
It was shortly after this time that Fran married her husband Kent, a retired Lt. Colonel in the Air Force, and computer programmer for the NASA jet propulsion lab. She left her job in San Diego and moved to his home in Simi Valley. They were comfortable financially and because she was under so much stress from her job demands previously, she decided to take an early retirement.
On Fran’s sixtieth birthday, she and her three sisters celebrated with their decennial birthday trip to San Francisco. My mother flew in for the celebration and it was upon arrival at the hotel, when Fran unpacked her suitcase, that my mother noticed something unusual. Fran’s suitcase was poorly packed, and the clothes didn’t make any sense for the type of weather in San Francisco. My mother also noticed that Fran was repeating many of the same questions, and could not remember the itinerary. She’d ask multiple times “What’s the plan for today?” even after the question had been answered. It was unusual, but Fran never admitted having any problems.
Fran’s husband Kent attributed any differences to just being part of her personality. My mother spoke on the phone with Fran regularly but it was difficult to ascertain any real, concrete issues over a long-distance phone conversation, and Fran still never admitted that she had any problems. Maybe it was avoidance, but it struck my mother as odd. After all, it was Fran who had the experience in the medical field, and it was Fran who consulted the neurologist and coordinated all the treatment when her mother (my grandmother) developed vascular dementia following a stroke later on in her life. Surely she would be able to recognize whether she was having problems with her memory and would convey this concern to her family, but this was not the case.
A year and a half passed before the extent of Fran’s decline became fully apparent and her independence was compromised. She drove until one day she had the keys but couldn’t remember how to start the car. It was at this time that she and Kent went to the see a neurologist and, based upon her history and symptoms, Fran was diagnosed with early-onset Alzheimer’s. According to my mother, the geriatric neurologist that they saw seemed “laid back” about treatment. It was assumed that life would go on as normal for as long as possible without letting the disease become the sole focus of their lives. Treatment was minimal and limited to medications. Fran was put on Aricept (Donepezil) as well as a number of other medications to control mood and hallucinations caused by sundown syndrome. Kent continued working as long as he could while Fran stayed at home. There was no improvement in her condition and the medications given were unable to stop the inevitable decline in cognitive function caused by Alzheimer’s disease. While there was an Alzheimer’s adult “daycare” program in the area, all of the patients were 80+ years old and in the advanced stages of the disease. It was too difficult for Kent to put Fran in one of these programs. She was only 62 at the time.
Kent has since retired from his job is now a full-time caregiver for my aunt. He is involved in an Alzheimer’s caregiver support group where they discuss the challenges of caring for a loved one with dementia. The biggest challenge has been my aunt’s steady decline in language and inability to communicate or interact with loved ones. Unlike others who exhibit belligerent or confused language, my aunt has been in decline towards mutism. In a conversation with my mother after a support group meeting, Kent stated that, “These people are talking about [their family member] being argumentative and combative. I’d just like her to talk!” Fran has been mostly non-conversant for three years, although with prodding my mother can usually elicit a one word response, such as an answer to a yes or no question, when speaking on the phone. She does not communicate with others, and does not make eye contact, although will occasionally giggle along with Kent when he laughs.
Family life has been drastically impacted. Kent tries not to isolate himself, but being a caretaker is a full time job. He has retired from his job and given up his position on the board of directors of his church. While he’s still able to go out shopping and run errands, there is very little socialization outside of the family and people from church. Their plans after Kent’s retirement were to travel and enjoy their golden years together. They have found that Alzheimer’s has no respect for plans. While they do get to travel a bit, vacations are limited to short trips with family members. All family lives out of state, and the distance makes it difficult for everyone involved. My parents and other aunts visit as often as they can, but this is usually limited to a couple of times a year. Fran’s tendency to wander has made doing things outside the home difficult. A simple activity like dinner at a restaurant has become a challenge without advance planning and other family members around to help. Alzheimer’s is a lonely disease, not only for the person with the disease, but also for the person’s loved ones.
There are some moments of “still Fran”, though. Last April my parents went to Big Bear, CA with Kent and Fran. Fran was nonverbal at this point, but my mother was having a one-sided conversation with her while they were walking down the main street. They passed a tattoo parlor and my mom suggested in jest that they both go in and get tattoos, to which Fran responded “Oh my God, no!” It’s apparent that however infrequent, there are still moments of lucidity. She’s usually fairly easy going, but she does have times of anger when my mom is trying to help her with dressing or showering. That’s the old Fran, a capable woman who wants to maintain her privacy and independence. At the age of 65, she is now in the late stages of Alzheimer’s disease. The disease has affected her stature; she has lost thirty pounds and is very frail. My mother tells me that she’s still Fran, but less and less every day.
Copyright © 2013, 2014 Lee Ann Faria. All rights reserved.