I am a full-time, sandwich-generation dementia caregiver. I am exhausted.

Rosanne Corcoran

I am a full-time, sandwich-generation dementia caregiver. I am exhausted.

Rosanne Corcoran

“What’s new?”

Though they may not realize it, it’s a trick question friends, family, and acquaintances ask me. I’m a dementia caregiver. I don’t know exactly how to explain how every day is identical and, in the same breath, capture how each day is different. Each day oscillates between lucid moments with the woman who has been an essential part of my life for 53 years and having her ask me, “Where is that woman? The woman who was here earlier who left.” “It’s me, mom,” I say. It’s always me.

My mom, Rose, is in the final stages of dementia and receiving hospice care. She has lived with me, my husband, and two daughters since 2015. I have been her primary caregiver since 2008. That’s when I first noticed the signs that her mind was changing and living independently would no longer be safe for her.

After my mother’s dementia diagnosis, we were instructed to get her affairs in order and shown the door. In the time that followed her diagnosis, I felt confused, sad, and abandoned by her medical team. These are common feelings expressed by my fellow caregivers. A sense of going it alone and without adequate support is the reality we face daily. As a result, we occupy many roles in order to take care of our loved ones. In my case, I am an advocate, administrative assistant, beautician, nurse, and more all rolled into one.

I provide her doctors with everything from blood pressure readings to headache and symptom tracking, which I log in a journal. I deal with health insurance claims, assist with activities of daily living (bathing, toileting, dressing). Without any formal training, I’ve learned to perform medical and nursing tasks such as wound care. I purchase, out of pocket, medical equipment that I have to set-up and learn how to use. I fill and track her medications including logging how they interact and impact my mother’s health. I also go grocery shopping, pay bills, and provide her with companionship. Are you overwhelmed yet? I am.

When she first moved in with my family, I could leave her to run to the grocery store or pick up my daughter from school. Even then, I put a video camera in her room so I could talk to her and see if she needed help. I still have that camera in her room, but the days of being able to leave her alone are long gone.

Some people like to compare caring for someone living with dementia with caring for a newborn. They advise you to “sleep when they sleep.” What well-meaning friends and family miss is that you can place an infant in a crib, and they will not move from where you left them. Someone living with dementia is a full-grown adult with free will who will do whatever their dying mind tells them. There is no rest for the caregiver, even when we sleep.

Though my role as a family caregiver is one that I fully accepted and anticipated, I wasn’t prepared for the complete exhaustion and utter strain--both physical and emotional--that would come with it. I didn’t know that my schedule would disappear. I took for granted the choices, both big and small, I was once able to make for myself. From deciding when I go to sleep or wake up to attending my daughters’ graduations from high school and college. It’s gotten to a point where I can’t even shower when I want to. I have to squeeze my life into the spaces around my mother’s care. As her care fluctuates, so does my schedule.

Every day starts with anxiety: Is today going to be worse than the day before? Getting out of bed feeling more tired than when I went to sleep is all but guaranteed, and I never know what I will find when I see my mother. If I wake up to the sound of her floor sensor going off, I get up to help her walk. When the floor sensor isn’t jolting me awake, I quietly enter her room and look at her comforter to see if it’s moving. To see if she’s still breathing.

Being on duty 24 hours a day, 7 days a week is exhausting. I’ve had about ten days off in the last three years. I know I need these breaks--that proverbial self-care for the caregiver. But how? Hiring outside, professional caregivers is time-consuming and expensive. In my experience, the agencies you contract with will tell you all about how their caregivers are trained and the procedures they follow. What I want is a caregiver who is compassionate and educated on my mother’s disease. One who sees her for the whole person she is. One who can assist her but make it seem like they’re just there to visit. One who can answer the same question 100 times and remain calm. I want someone like me.

If we were to bring in an outside agency for care support, we would be paying for at least three shifts of people everyday day with two on stand-by. To my mother I am indispensable, but I am paid nothing. In the process, I am losing whatever social security contributions I would be making in another job as well as any 401k or other savings account to use in my own retirement. I feel invisible to the healthcare industry and yet I, and the 53 million other family caregivers in the U.S., save them billions of dollars in care every year. Off hours, doctors have recommended I “call 911,” and during office hours their answer to my questions is often, “Well, you can try that and see if it works.”

Caregivers don’t speak up because we’re depleted. We haven’t slept. We don’t eat right. We drink too much (or too little). We are desperately trying to hold onto some semblance of our pre-caregiving lives while that version passes us by. For the people thinking, “Well it’s your mother, of course you’d take care of her.” That’s not the issue. I would do it all over again, but how about a little more support? We don’t know what we don’t know, and often we don’t know how--or have the time--to access what is available.

Until society recognizes family caregiving as a normal part of life, we’ll continue to look for validation that we matter and that what we’re doing is valued. So instead of asking your family caregiver friend “what’s new?”, ask them how they are doing. This question comes in many forms and can be as simple as: “Have you been able to get any rest?”; “Have you eaten?”; “Is there anything I can help you with?”; and “Do you need groceries?” When you’re not sure what to say, providing a compassionate ear goes a long way. We just need a safe place to share our fears, hopes, and all that is weighing on our hearts and minds.

Rosanne Corcoran (@RosannePodcast) is the host and producer of Daughterhood The Podcast.

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