Love Can’t Always Change the Outcome, But It Can Help Lighten the Load
Lindsey’s Story About Her Mother’s End-of-Life-Journey
How did this piece come to be?
Last year I contacted the editor of The University of Chicago Magazine and asked him to publish a call-to-action with respect to Carolyn’s and my newsletter Role Reversal. My hope was that at least one alumnus/alumna would contact me to share a story. I was thrilled when Lindsey reached out to me last September and said she had a story to share about her mother. Lindsey and I have never met, but what we have in common are the University of Chicago and our experience with the cognitive decline of a loved one.
Shortly before Christmas, Lindsey and I chatted, and during our 1&1/2-hour conversation, I jotted down several notes. I was touched by Lindsey’s openness as she relayed…at times with a few tears in her eyes…her mother’s 10-year journey with cognitive decline and aphasia. Lindsey mentioned she has only now had the opportunity to truly process everything that happened.
At the end of our discussion, I proposed to Lindsey that I write a piece based upon the insights she gave me. She agreed, and what follows is what I’ll call Lindsey’s and my “joint project”. I thank Lindsey for her time and devotion! I’m convinced her mother’s journey and the way Lindsey dealt with it will provide us all with yet another perspective on role reversal.
Who was Lindsey’s mother?
Lindsey’s mother Gail was born in 1940, the youngest of four sisters. Her oldest sister – who recently passed away at the age of 100 – was 18 years older than Gail. Due to the significant age difference between Gail and her oldest sister, she was from a different generation. As Lindsey put it, “My mom was caught between two generations”, and “Mom’s nieces and nephews were more like siblings to her than her own sisters”.
After her separation from Lindsey’s father in the mid-90’s, Gail moved back to the Chicago area where she was raised. There she found a good job and established a happy home and social network, singing in a local choir, seeing her family members regularly, and taking care of her “grand dogs” when Lindsey moved to the area in 2003. As time went on, it seemed Gail was “needing” people more often. Despite living on her own, she would call people for help as soon as she identified problems, for example with an appliance, a leaky faucet, or telecommunications (phone, cable TV).
Gail’s lifetime project was to obtain a 4-year college degree, which she received when she was in her early 60’s. After retiring at 66, she worked part-time for several years as a librarian. Gail was a prolific correspondent, maintaining contact with friends and family near and far, including a pen pal friendship with a woman in Japan for 40+ years. Gail finally met her pen pal at Lindsey’s wedding in 2006!
Upon which stage did Gail’s end-of-life journey play out?
Gail’s cognitive decline, which developed into Alzheimer’s and aphasia, began in 2010, when she was 70 years old. At that time, Lindsey was 40, married, with two very young children. Lindsey pointed out that her mother was the only one of her sisters who succumbed to Alzheimer’s. Her grandmother – Gail’s mother – also had Alzheimer’s.
Lindsey’s involvement during the initial stage of her mother’s cognitive decline remained at a minimum. Lindsey and her infant daughter filled Gail’s medicine box every couple of weeks, and they took her out to lunch. However, Lindsey’s mother still lived on her own. Then, Gail’s calls for help became more frequent. She became frustrated more easily and suffered from anxiety, for which her doctor prescribed a low dose of an anti-depressant.
When Gail was 73, her older sister moved to a nearby senior community, and Gail bought a condo there. She enjoyed her brief stay there, as her illness advanced, taking advantage of the social opportunities at the facility’s restaurant most mornings and walking around the small lake several times a day when the weather was nice. By 2016, Gail’s cognitive decline had progressed to the point that she could no longer write – or only write short notes – and could not speak full sentences. In 2017, when it was clear that independent living – even with a helper several times a week – was no longer an option, Gail moved across the street to the nursing home.
Lindsey said her mother never had the feeling she was being “put away”, as is sometimes the case with loved ones for whom a nursing home is the only viable option to ensure their health and safety. Gail’s move to a nursing home had no negative effect upon her relationship with Lindsey.
Lindsey shared with me that her mother’s sisters and some friends couldn’t understand Gail’s illness. One childhood friend even went so far as to say that Gail wasn’t trying hard enough to overcome what it was that was ailing her. My first thought was, “To this day, some people believe those who suffer from cognitive decline have control over that which is happening to them!” I strongly believe Gail’s sisters and friends had difficulty facing the reality that Gail was going through a metamorphosis. I can certainly understand this reaction. Who wants to admit a loved one is being confronted with cognitive decline? No one does!
It was also difficult for those who visited Gail to enjoy the time spent, as Gail’s only utterances were jibberish. Lindsey, her husband, and children brought puzzles, games, or pictures to look at with Gail, and did not expect to hold a conversation. However, for Gail’s sisters and peers, visits were a struggle with only a one-way dialogue.
During her first few years in the nursing home, Gail developed quite a reputation as a social butterfly who, in contrast to the much older residents, was very active and would walk laps around her floor. She would stop at the nurses’ stations or elevators, smile and “chat” with staff members and residents. Gail left those unfamiliar with her dumbfounded at her intent to talk, but inability to make sense. Those who knew her, loved her and were always happy to receive a visit (even if she took something with her that didn’t belong to her when she left)!
As she neared her 80th birthday, Gail’s weight continued to drop, and her interest in food waned. If she did eat it was with her fingers, and sometimes she would push the food around on the plate or shove it in her mouth. Lindsey and her sister asked for hospice to give their mother additional supportive care. Concerned that their mother might choke, Lindsey and her sister initially tried pulverizing Gail’s food and supplemented it with nutrition drinks/shakes, but Gail still lost weight.
Lindsey’s last visit to her mother before the nursing home closed its doors to visitors due to Covid-19 was on March 9, 2020, her mother’s 80th birthday. During the lockdown, hospice workers and a pastor visited Gail regularly. This was – as Lindsey put it – a God-send, since she was not able to visit her mother. I could relate, as the nursing home where my mother lived closed its doors to visitors a few times due to Covid-19.
Seven months later, in October 2020, Lindsey received a call from the social worker at the nursing home that Gail had suddenly stopped walking. While the nursing home couldn’t pinpoint what had brought about this sudden development, Lindsey knew this was a bad omen. Indeed, Gail’s confinement to bed brought about a swift decline in her health. The nursing home waived the COVID restrictions on visitors so that Lindsey and others could visit her mother again. Gail recognized Lindsey and was happy when she came. I have absolutely no doubt Lindsey was grateful for the opportunity to visit her mother again. Why? On November 24, 2020 – the Tuesday before Thanksgiving – Lindsey’s mom passed away.
During her 10-year end-of-life journey, Gail had gone from being an independent person to someone who was no longer able to write, talk, walk, or eat. Lindsey told me that when her mother couldn’t walk anymore, she lost her reason for being. Her mother – like mine – had enjoyed walking the halls of the nursing home floor. I know my mother would have felt both helpless and useless, had she no longer been able to move around. That’s why I could understand Lindsey’s statement.
What was and has been the impact of her mother’s passing on Lindsey?
While coping with her mother’s death, Lindsey was confronted with a few other challenges, namely:
· Her husband was unemployed (he now has a new job),
· Her two children experienced changes in school, and
· Lindsey had to adjust to a new supervisor at work
The stress caused by these events made it even more difficult for Lindsey to process the loss of her mother, as well as the loss of her aunt – her mother’s sister – who passed away a month before Lindsey’s mother did.
In September 2021 – almost one year after Gail passed away – Lindsey and her sister held a memorial service for their mother. This helped Lindsey immensely. However, her grieving process continues.
Gail’s sister read the book Where The Light Gets In, written by Kimberly Williams-Paisley, and recommended it to Lindsey. Lindsey said her aunt understood much better what her youngest sister had suffered from after she read the book. Lindsey too has found the book helpful during her own grieving process.
What do I cherish about Lindsey’s story?
I was impressed by Lindsey’s openness and frankness. As we were talking, the image of a fountain came to mind. Lindsey’s story jetted out like water from a fountain.
It was also clear to me that Lindsey had her mother’s best interest at heart and tried to do everything for Gail while managing a family and job, as well as tending to herself.
I wish Lindsey the space, time, and peace she may need to continue to fully process the events leading up to her mother’s passing, as well as the effects of her mother’s loss on her and her family.
Thank you, Lindsey, for being so honest, open, and willing to share your special story!
Thank you for your hard work on sharing my mother’s journey. It has been a challenge to adjust to her absence but I hope reading her story helps others understand the complexity of dementia and how important it is to support our loved ones the way they want to be supported (which isn’t necessarily the way we would want to be supported)!
Hi, Jackie. Thank you for sharing Lindsey's story...it adds to the depth of sincerity you give to this column's theme. I continue to better understand later-in-life challenges when I read your work. And thank you, Lindsey, for sharing so openly about your mother's illness and life.
Jim Farfaglia