Alzheimer’s disease changes lives. Even though the disease is gradual, no one is ever ready for the impact the disease has on family relationships and responsibilities. As a granddaughter, I was flattened by my grandmother’s diagnosis two years ago.
I have moved often throughout my life, but one element of stability has been my grandparents and their residences. I have a strong connection with my maternal grandma as she, my mom and I are the only girls on this side of the family. Our relationships are strong and my memories are vivid; I remember the distinct smell of her residence—a combination of good cooking, flowers and cleaning products. My grandma has always been a high-energy, fashionable, beautiful and fun-loving woman. She has also been one of the strongest and feistiest people I know. Her distinct sayings, lessons, cooking and laughter are forever ingrained in my brain. We are bonded for life, despite the fact that she no longer knows who I am.
My grandmother had actually cared for my grandpa for 30 years as his health had been compromised from a bad car crash in his 40s. She had to go to work during a time when women stayed home. She had to teach him how to walk, talk and toilet train again—and all while she had a young child (my uncle) and a college student (my mother). My grandpa eventually retrieved some memories and was able to be a good companion to my grandma, but he never worked again. He also heavily relied on my grandmother for the household responsibilities. So a large portion of her life was spent as a caregiver; and I have to say—she did a phenomenal job.
A little over 3 years ago, my grandfather passed away. Obviously, this devastated my grandmother as her spouse of 60+ years was no longer there for conversations, socialization and daily interactions. While my grandfather had health problems, he was her companion and they had a good life. Theirs is truly one of the love stories in movies; they met during World War II at a community dance, built a strong life and business together (my grandpa made a good living as an entrepreneur), had two beautiful children, and filled their home with good food, laughter and song. In fact, my grandfather sang in a barbershop quartet and he and my grandmother would always harmonize. Some of my best memories are of the two of them singing—their faces filled with emotion, passion and undeniable talent.
After my grandfather passed away, my grandmother went down hill fast. She had been forgetful before he died, but it was more basic memory retrieval problems; such as forgetting where her keys were or calling my 3 brothers each others’ names accidentally. But within a few months after my grandfather’s death, she literally spiraled into dementia’s clutches. She began to repeat herself constantly and cry. She spoke about how lonely the house was without my grandpa, even though she had visitors daily. She became bitter and angry. The ‘joie de vivre’ she had always had was no longer there.
When my son was born in 2010, my grandmother was delighted. She had something to enjoy and a distraction from her grief from the loss of my grandfather. While everyone in the family knew she suffered from memory loss, she was still very much the same woman we all adored, in many ways. My brother had a daughter, but he lived in China, so my son was the first geographically-close grandchild. She has always loved children; this is one one reason we would later place her in a residential care home where children lived along side the elderly residents.
She doted on my son, cooed to him and actually gave me helpful advice on raising children. She flew—by herself—to visit my family in Seattle to spend time with her grandson. Where their signs foreshadowing early stages of dementia? Sure. For example, she lost her makeup and had some confusion about a few small things about her flight; but we all discounted this as just normal travel hype and exhaustion. This was the last time I truly saw the version of my grandmother I want to remember: The strong, loveable, savvy woman who carries so many of our family idiosyncrasies in her language and humor. In fact, I remember watching my grandmother adore my son and feeling how precious and perfect their relationship was. An incredible, 1st and 4th-generation unspoken connection.
My uncle was the local caregiver, so he was the one who delivered the Alzheimer’s news. You see, my grandmother continued to live in her family home, the home she and my grandfather had purchased in the 1950s—a 3-story, lovely brick home with a big, landscaped yard. The home had begun to be too much responsibility for my grandmother so my uncle had to start helping with basic household chores and responsibilities. It soon became blatantly obvious that the family had to reevaluate my grandmother’s living situation as she stopped taking showers, started to break appliances out of frustration, kept falling and couldn’t keep up daily activities.
My mom lived in Washington, so unfortunately, a lot of the burden fell on my uncle. While we all had an inkling something was wrong,we mostly assumed it was normal aging. We had no idea my grandmother would go from being a seemingly independent, vivacious and driving woman; to a wheelchair-constrained, angry and completely dependent old woman in less than a year. But once the doctors diagnosed her with Alzheimer’s, it happened this fast. Maybe it was her own knowledge of the disease or maybe it was that she was truly lonely without my grandfather. Either way, she became old seemingly overnight—especially for those of us who lived out of state.
My uncle attempted to let my grandmother stay in her family home, however, we quickly discovered this wouldn’t be an option when she wandered into the neighborhood in her pajamas, confused and knocking on neighbor doors. While she had my uncle and cousins alternating looking after her, this wasn’t enough. She needed absolute 24/7 memory care—which was too much responsibility for both my uncle and my mom who were both still full-time workers. So she was moved to a memory care community.
At the memory care community she reverted back to her youth. She thought she was in her early 20s and wanted to court “young” men. It was actually while dancing with a man at her community that she fell and shattered her pelvis—an injury from which she’ll never recover as the physical therapy ended up being too stressful and difficult for her.
After her fall, she began to fight with nurses and doctors; that same feisty and fighting spirit that had carried her through the ‘tough’ years arose in a woman who suffered from a deteriorating brain—which only made care difficult. This was when mom decided to bring her to Washington.
It’s rather ironic; I’ve always wanted to live close to my grandmother, and when she first came to Seattle, I almost didn’t recognize her. She had white hair, no makeup and was in a wheelchair. She had always been very put-together and died her hair brown up until the year prior, so this was quite a contrast. And, sadly, she doesn’t know who I am 99% of the time. But it is truly a gift when she does know who I am—and I make it a point to visit her on a regular basis—despite the fact that she doesn’t know me. I know she is at least comforted by company and knows I have a ‘familiarity’ to her life; something not easily put into words.
Her moments of lucidity…
I had a daughter 3 months ago and really wanted my grandmother to meet her granddaughter. On my 3rd visit with the baby [my grandma started to know me as “the mother of the baby”], my grandmother immediately knew who I was. It was quite incredible and rather bizarre. Her reaction was “You had a baby? Have the other kids had babies?” She couldn’t believe what she had missed in her year of her mind’s absence. Why the mind sometimes functions is just another mystery of the disease. But she has normally just awakened from a nap when she remembers the family. Our hypothesis is that sleep’s rejuvenating effects on the brain may have something to do with it. Whatever the reason, I’m thankful that grandma got to meet her great-granddaughter.
Memory reverts back to younger years…
When I ask my grandmother her address, she gives me the exact address of the home she lived at as a child. She talks about her sisters and the boys who interested her in high school. I feel like I’m really getting a chance to know a ‘younger’ version of my grandmother. She tells me about life with her sisters and when she first started dating my grandpa. It’s pretty cute, actually.
I will never be able to walk into my grandmother’s home and be greeted by her loving embrace. Her phone number—a number I’ve called for 30+ years—is no longer in service. She will never sing to me on my birthday again, as she has done every year since I was born. We will never make our signature fudge and divinity recipes in the comforts of her kitchen again. These thoughts alone are enough to bring tears to my eyes, but the bottom line is that she is still very much alive; just living in a sort of alternate universe. And this amazing woman who constantly sacrificed her own comforts so we could have ours, now needs our help.
And all I can hope for is that a cure for Alzheimer’s disease is found. My grandmother has it, and her mom did, as well. Chances are good that both my mom and I will eventually be diagnosed. And I don’t even want to think about my daughter having to deal with the heart wrenching disease. A family foreshadowing is all I need to become active in the fight to cure Alzheimer’s.
Has your family been impacted by dementia or Alzheimer’s disease? What gets you through? We’d love to hear your comments below.