A devoted wife and mom, who is caring full-time for her husband with the terminal motor neuron disease Amyotrophic Lateral Sclerosis (ALS) is giving her all to making core memories for their 3-year-old daughter to help the little girl experience what life is like as a happy family of three.
Lindsay Rodney, 38, lives with her 45-year-old husband, Adam Rodney, and their daughter, Frankie, in Canada’s Ottawa Valley. Mr. Rodney was diagnosed with (ALS), also known as Lou Gehrig’s Disease, in February 2021.
“He had been exhibiting symptoms since about six months prior to that,” Ms. Rodney told The Epoch Times. “He had started having some weakness in his hands. We noticed his speech was starting to slur on certain occasions. ... He also had a few instances of tripping and falling, because his legs were starting to get weak.”
The couple first met while working for the same construction company about 14 years ago. Ms. Rodney was an administrator and fell for her future husband, a field technician, for his humor, wit, and “super positive” energy.
The couple got married three years later and began trying to grow their family in 2016. After three devastating miscarriages, they welcomed Frankie in March 2020 and were loving being new parents when Mr. Rodney’s diagnosis changed their lives forever.
“It was during the height of our second wave of COVID,” Ms. Rodney said. “He was told that they suspected he had ALS in a room by himself, without any supportive people around him. It was terrifying. ... I went back to work for a while, right after the diagnosis, and it turned out to be too much.”
To support her husband through this trying time, Ms. Rodney took leave from work and soon became her husband’s full-time caregiver.
Today, Mr. Rodney is one hundred percent physically dependent. Although he’s aware of his condition, he is unable to move or speak. The couple have received help and support from family and friends, who clean their home and tend the lawn, and personal support workers, who handle Mr. Rodney’s morning routine and personal care.
They have a hospital bed and lift inside their home and a pool of borrowed equipment from the ALS Association that has been a “life-changer.” Ms. Rodney oversees her husband’s medication, his daily naps, and their daughter’s routine. Most of all, she puts in the effort to ensure their daughter gets to know her father and feels his love despite his disease.
Ms. Rodney said: “I will do anything that creates a core memory for our daughter with her dad, even if it means something extreme for me. It doesn’t matter how hard I have to work or doesn’t matter how much work I need to put in to make it happen, I will make it happen, because I know it’s important for her, for him, and for me to continue to make memories, even if it’s not the way we thought it would be.”
Ms. Rodney ensures that little Frankie spends time with her father by reading books, watching movies, and playing with her dolls on his bed. “She will talk to him, and he’s able to respond by moving his eyes or making a short noise,” she said. “Watching them continue to maintain a bond is pretty amazing.”
Mr. Rodney, who can still raise his eyebrows and smile, uses Tobii Dynavox eye-gaze technology, a computer with a camera that is calibrated to his eye movements, to communicate more complex needs. He can use the device to control his TV, send emails and texts, and access social media.
“The device speaks for him as well,” Ms. Rodney said, “so he can type out a sentence saying, ‘I love you, Lindsay,’ and it will speak. ... Then we just use a raised eyebrow for yes, and if he doesn’t move his eyes, that’s a no.”
While the family has learned to “be adaptive” to Mr. Rodney’s changing needs, both the husband and wife have struggled with mental health since the ALS diagnosis. For Mr. Rodney, the shock of losing the ability to walk, talk, and feed himself was a major hurdle.
“He is very mentally sharp, so he is fully aware that his body is shutting down on him, which is a scary thought. But he tries to be in the moment, especially when our daughter is around,” said Ms. Rodney, for whom the reality of her husband’s disease, and the loss of their future, has been hard to come to terms with.
“I often don’t think about the fact that Adam is dying, because if I do, it’s really difficult to function every day,” she said. “But it really is a choice every day to be grateful that he’s here, because I know one day he [won’t] be, and I will miss him.”
She uses social media as a record of family life and hopes Frankie will be able to “go back and read what life was like” in the early stages of her father’s ALS journey when she grows up.
Through the growth of the Instagram channel, she has met numerous people who share her struggles with caregiving and solo parenting and can offer their love and support.
“We’ve had a few videos go viral, and it’s just been amazing,” Ms. Rodney said. “Talking about different things, like anticipatory grief ... a lot of people reach out and say, ‘I never knew that there was a term for anticipatory grief like I’m grieving now, even though my person is still here’ ... I didn’t know what I was feeling was normal,'” she said. “I think just talking about our struggles and normalizing what people go through behind closed doors is so important for human connection.”
As a wife and mom, Ms. Rodney believes that it’s all too easy to get caught up in other’s needs before your own and any advice can seem to fall on deaf ears when a caregiver is in “survival mode.” However, through her journey, she’s learned that asking for and accepting help is a skill, and doing so can help lift the burden of responsibility.
