When my mother was diagnosed with Alzheimer’s disease two-and-a-half years ago, it soon became apparent that she would need 24-hour care.
I work full-time and live in a small apartment with two kids, so caring for her myself or having her move in with me was not an option. Thankfully (after nine months and tons of red tape), I was able to get her into a Medicaid program and arrange full-time in-home care for her.
What I didn’t expect was that caring for her would still be a full-time job. Don’t get me wrong. I love my mother and want to help her. Her condition is heartbreaking, and I’m extremely grateful that she has people with her to manage her moment-by-moment care needs, like cooking, cleaning, grooming, medication reminders, and making sure she stays safe.
Still, I never expected how much work caregiving for an elderly parent would be, even if I’m not providing direct 24/7 care.
My mom is reliant on me
My mother is extremely reliant on me emotionally. She can still use her phone, so I get about 20 to 30 texts and about one to 10 phone calls from her daily.
Each time her aide gives her medication, she texts me to ask what it’s called. She asks me multiple times a day when I will see her next, even after I answer her. It’s endless repeated questions, confusion, and fears. I can’t respond to everything, but I have to respond sometimes, and it’s a constant interruption to my day.
I live five minutes away from her, so anytime she needs something, it falls on my husband or me. She can no longer shop or run errands and often needs help with this or that around her house. We are there multiple times a week helping her. She tends to lose things, break things, or cause other problems at home that require outside support. I also make it a practice to spend one afternoon a week with her just spending time together.
I’m always on the phone, figuring out paperwork
Then, there’s the health insurance paperwork and phone calls, doctor phone calls, calls with caregivers, calls with other family members, etc. Not a day goes by that I’m not on the phone with someone or an organization that helps provide her care.
I also take my mother to every doctor’s appointment she has, which can be quite frequent. I manage her medication, which includes renewals, pharmacy pick-ups, and filling her medication trays weekly for her aides. I also manage her finances and pay all bills.
On top of all this, there’s almost always some emergency each week. Last week, my mother locked two different doors in her apartment from the inside, making the rooms inaccessible, and we had to call an emergency handyman to get them opened. We then had to go out and buy new doorknobs and figure out how to temporarily disable the remaining doorknobs in her house so she wouldn’t lock them, too.
I’m on the phone with her aides, my other family members, and her doctors to discuss how to handle things.
I grieve for who my mom once was
The whole thing is just so much to manage, and so stressful, too. I spend many sleepless nights wondering how I’m going to do all the things I need to do for her, and how I can possibly do it all for the next few years, as she continues to live with her condition. She is in her late 70s, so it may still be another few years before she lives with this condition. Alzheimer’s is progressive and incurable, and while the caregiving tasks will evolve, they will continue to be here for the rest of her life.
While I grieve for my mother and what her life has become, sometimes I feel like I have little time to feel sadness. The kind of care I provide for her is so relentless and so stressful that there is almost no time for me to even consider my own feelings about what’s happening to her. When do I get to say goodbye if I’m knee-deep in the daily tasks that are necessary to keep her safe, all while she deteriorates before my eyes?
I know that one day I’ll look back at this time and remember all the little moments we had together — the way I held her hand as we took a walk through her neighborhood, the contented sighs from her on the other end of the phone while I reassured her again that I would see her soon. I know she would appreciate all the tasks I do for her if she understood what was going on around her. I know that each thing I do is an act of love.
But I am drowning in these caregiving tasks, and sometimes wonder how I’m going to make it through the next bunch of years with my mental health intact.
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