“My mom Mila was my best friend. One thing I will always remember is her smile,” Usha began, as she told me about her experience as her mother’s sole caregiver.
Mila passed away a year ago, following a nearly 20-year struggle with various illnesses including Alzheimer’s disease. “She had a great influence on me; she was also the sister I always wanted,” said Usha.
Born in Mauritius, Mila lost her parents at a young age. She moved to India where she grew up, overcoming the challenges of adapting to life in a different country. She eventually married a physician and moved to the United States, making a home in Florida.
Her husband’s profession was demanding. A homemaker with a penchant for art and interior decoration, Mila was always there for her son and daughter. “It was a perfect childhood for my brother and me,” Usha told me. “Mom was always there for us. She was a passionate woman, a people’s person, and a majestic cook who loved to entertain.”
Usha graduated from college in 1997 and started work. The following year, her papa died suddenly from a heart attack, hitting the family hard. Usha gave up her career plans to remain close to her mom, who became clinically depressed. She initially lived close by, going frequently to check up on her mom and help her with various things.
Over the next three years, Mila developed multiple illnesses. She suffered from hallucinations and was diagnosed with schizophrenia and bipolar disorder. Once she ran away from home and was found by police eight hours later. “These were the first red flags, for me,” Usha recounted.
“Then mom started giving her money away – thousands of dollars – to unsavory people who were preying on her. One day I came home from work to find she had thrown away most of my clothes.”
Mila developed mobility and stability problems, and began to use a walker. “It wasn’t until a few years later, after a fall sent her to the ER, that tests established that she had Alzheimer’s disease and dementia. I wasn’t clear then how much the illness had advanced, or at what stage she was,” Usha recalled. She moved in with Mila to better care for her.
The Challenges Of Caregiving
Following the dementia diagnosis, Usha found the going tough. She still worked full time. She had trouble getting her mom to use the walker. Mila became prone to mood swings and sundowning, restlessness, agitation, irritability, or confusion that can begin or worsen as daylight begins to fade.
Apart from a couple of friends, Usha had no one to help her navigate the system. Her mom’s mobility and balance worsened and her dependency grew. Her falls became more frequent, and Usha increasingly struggled to pick her up, needing help. There were frequent calls to 911. Usha built a group within the neighbors’ network to help her; on occasion even the security guard in their building would come up to help.
Growing Care Requirements
“I had to take a crash course to understand dementia. It was so frustrating to realize that we had lost all that time when I could have cared for mom better.” She grew more concerned about what Mila might do during the day, while she was at work.
During her mom’s frequent trips to the hospital, Usha established a rapport with some nurses and aides there, and slowly built a roster of trustworthy home health care aides to come in and help with her mom’s care. They initially came for 10 hours/week; in time this grew to 20, and then 30 hours/week, as Mila’s care requirements grew. Mila found comfort in having the same aides coming over time; they got used to one another. The aides proved to be a security blanket for Usha, who was comforted by the knowledge that she had regular, reliable help.
“I was more or less alone on this journey and had to figure out everything on my own,” Usha stated. She reached out to the Alzheimer’s Association searching for resources. “They helped me understand how to deal with mom’s different health issues. One valuable tool they taught me when dealing with my mom was how to change the conversation.”
Usha learned to work with Mila’s primary physician to coordinate her care across all specialties and set up clear communication. With everyone aligned regarding Mila’s multiple conditions and medications, she received the best care, especially during her hospitalizations.
The Impact Of Covid
Mila suffered a mini stroke and was hospitalized when the US first shut down for the Covid-19 pandemic. She was subsequently transferred to a skilled nursing facility for a period of time for rehabilitation. These were particularly challenging times for Usha as a caregiver – unable to visit or see her mom. Since Mila couldn’t even pick up the phone, Usha would have to depend on someone being in the room to answer the phone, so she could speak to Mila.
Transporting Mila anywhere increasingly became a struggle – getting her in and out of the car, and managing the walker – when Mila could no longer understand and respond to commands to turn, to sit and so on. Her health deteriorated very rapidly in the last few months. She was hospitalized in Sept 2021 following a series of strokes, and suffered severe physical decline. “That’s when I made the decision to reach out to home hospice,” Usha said. After six weeks of comfort care at home, Mila was transferred to a hospital where she passed away within a week.
Living A Double Life
As her mom’s health deteriorated in the last few weeks, Usha noted that her own health began to worsen as well. She exercised regularly whenever possible through her caregiving journey, and maintained her social life, meeting friends over dinner. However, she found it very stressful. “I felt I was living a double life, that my smile was just a façade.” She didn’t see any point in telling her friends about the pain she was going through; about living life minute by minute, scared for her mom, and not getting enough sleep.
Her lack of energy and fatigue increased. She began to neglect herself more as her mother’s care became more demanding. “I was at my fittest seven years ago, doing boot camp, walking five miles a day and running half marathons,” she said. “Exercise has always been the best outlet for my stress.” Even today, still in her grief journey, she returns to exercise for self-care.
Life In A Bubble
Our community needs to understand that dementia is not just a memory issue. The accompanying diseases can impact different parts of the body, decrease mobility and make care more demanding. Usha asks physicians to be more open, proactive, and provide families with all the background and facts regarding the prognosis, and prepare them to determine the best course of action.
She and her mom began to isolate themselves and “live in their own bubble,” and she now realizes how wrong that was. “It’s important to have these conversations in our community, she says. “Let us share our stories, use our voice, talk about our experiences. There’s nothing to be ashamed of. The more open we are, the better it will be for everyone.”
Doing so will better prepare others to look after their loved ones, and give them the courage to seek the resources they need. Building awareness, understanding and acceptance of dementia is critical. Usha’s experience has motivated her to advocate for her community, for others with this disease, and for their caregivers.
A Matter Of Survival
Here is Usha’s advice for other caregivers: Educate yourself. Be a student all over again. Learn about all the different terms you will deal with – home health care, palliative care, hospice. Join support groups. Ask for help; don’t be afraid or ashamed – I wish I had done so much earlier than I did. People will understand what you are going through and respond.
Don’t worry about what other people think. It’s a matter of survival. It is in your best interest. Speak up, and be the voice for your loved one. Speak for them whenever they are reluctant. Ask questions, get clarifications. Consult experts and support organizations like the Alzheimer’s Association. Be proactive with your own care – you have to be healthy to look after your loved one. Don’t beat yourself up when things don’t work out. Cherish the moments you have with your loved one.
I Miss My Mother
In college, Usha dreamed of becoming a diplomat, working in the UN or for the State Department. She gave up on those dreams to stay with her mom. She made many sacrifices, and in retrospect she wouldn’t have it any other way. Now, when she’s not working, she reflects on the challenges she faced and overcame.
“I know I put in a 110% for Mom. I don’t think anyone else could have cared for her the way I did. I did my best and have no regrets. I do regret that I did not fully appreciate her talents when I was growing up. I regret that she suffered so much, and was unable to enjoy life to the fullest. I did the best I could, and take comfort in that fact and that she is now in a better place. But I still sorely miss her.”
“I am getting to know myself all over again now.”