Project Caregiving
“We’re in a new crisis of aging, and there has to be a better way. Living longer, and having insurance doesn’t help with the day to day problems. People can figure it out but it’s hard.”
Shamala, a project manager from California, has used her knowledge to implement systems in technology. For the past few years, she’s had to apply that same skillset and as a family caregiver. “It’s like a project, and I’m a project manager. I have all the logistical skills and I am a caregiver, whether I want to be or not.”
When her father passed away, Shamala’s mother moved in with her. She’d travel between her 5 children, spending time with their families and dealing with only minor health issues. Around 2019, however, small changes in her mother, such as forgetfulness and eating less, seemed to escalate into something noticeable. “She started talking about the same thing over and over and over again. It was the same script morning, afternoon, and evening. We slowly realized she couldn’t comprehend anything. Nothing would satisfy her. When that realization dawned, we knew things wouldn’t improve.”
The siblings decided to get their mother evaluated. “The doctor told us that she was suffering from dementia. I didn’t even know what dementia meant. Alzheimer’s, dementia - they’re just words you hear on the news, or read about, or see in a movie. That wasn’t part of our world. That wasn’t supposed to happen for us.” Other than providing a diagnosis, the doctor didn’t give them an idea of what to expect. “It felt like we’d ticked the box - we saw the doctor. He gave us the top 5 bullet points on dementia. But you really don’t know what it really means. What is forgetfulness? What is the impact of their forgetfulness on you as a caregiver? it’s like someone describing the pain of an injury - you have no idea what it’s like until it happens to you.”
Although her two sisters and two brothers help, the bulk of caring for their mother fell on Shamala. “In the beginning, caring for mom felt like having another kid at home. I’d leave food on the table before heading off to work. Now I think that was the easy part. Things have become very stressful. It’s not a happy situation.” Ironically, Shamala’s mother’s condition deteriorated just as they overcame their financial struggles. “We went from having no money to having good things happen. I guess it was God’s plan - ‘I’m relieving your financial worries, but I’m also giving you this’,’ she reflects.“I thought I could finally pursue my dream of opening a boutique. But caring for mom took all my time. Maybe some people can do both, but I have no energy now.”
The weight of caring for her mother sometimes overwhelms Shamala, and she finds it hard to maintain her usual sunny outlook. “My sister said, ‘You can’t go down, we all need you!’ I’m always the one motivating and empowering people. But I have little motivation now, which is not a good thing and it isn’t me. I often find myself frustrated that I couldn’t do what I really wanted to do. I quit work and this is my full time status.”
Caregiving has taken on an added dimension for Shamala with her aging in-laws. Although they’ve moved into assisted living, they have specific dietary needs and refuse to eat unless Shamala prepares their meals. “The hardest thing is doing everything for everybody and not being able to do anything for myself. I make meals, supervise everyone’s doctor’s appointments. If you look at my calendar, it’s all about them.” Despite the demands, Shamala sees many lessons in this experience, both for her and her two grown sons. “It’s the school of life. They are seeing everything firsthand and have been so helpful. It’s made them better humans. I’m glad they have this opportunity to care for their grandparents.” Being a caregiver has also taught Shamala how unpredictable life can be. “You have no idea what is coming at you, no matter who you are. You could be anybody great or ordinary. We are all the same at the end.”
If there was anything she could change, it’s how the medical community prepares caregivers. “Nobody gave us more than a bunch of pills. It was all about the medication, not about what the family would go through. We’re in a new crisis of aging, and there has to be a better way. Living longer, and having insurance doesn’t help with the day to day problems. People can figure it out but it’s hard.”
Despite the many daily challenges, Shamala remains grateful that she’s been able to give back to her mom as a caregiver. “Even though it’s stressful, I have no regrets. I’m not mad at her. I know how much she loves me. And if she left today I’d know I’d done my best for her. Caregiving is an act of love. Do it with love and you’ll fill your own cup with love. You are doing it for you - not for the patient. Despite all the difficult moments, remember that this is temporary. Be good, be helpful. Love everyone and forgive, forgive.’