For our second series of caregiver features, our theme is a “A Day in the Life of a Caregiver”. Our goal is to capture the life of a caregiver in one single day. Caregivers share what they do, think, and feel as they go through their daily lives. We hope you enjoy reading these articles and can resonate with the lives of these caregivers.
Allison is from Hanover, Pennsylvania and has been a part-time caregiver for 7 years and a full-time caregiver for 1.5 years to her mother. She is a creative writer and founder of Your Truth Publishing. Through her Instagram, @allison_saia, she shares her authentic experiences as a caregiver.
A Day in Allison’s Shoes
SLEEPING IN My mom usually likes to sleep in, so I take advantage of that and sleep till about 8:30 AM. She’s been sleeping a lot more lately. So many days I have to physically get her up about 10:30 AM. Mom is 88 years old and in the later stages of Alzheimer’s. She was diagnosed about 9 years ago. Every day is a journey. We get dressed, get her coffee and pills, and settle her into her “tv room.” Every other day, I get her a shower. I used to try to do it every day, but it’s gotten too difficult. She hates the water; literally screams like a child that I’m hurting her. It’s incredibly stressful for both of us, so I’ve cut back on showers and hair washing. She craves routine, so she watches her game shows in the morning.
SELF-CARE COFFEE For me, self-care is usually a good cup of coffee in bed while the house is still quiet and the day is new. I drink my coffee and get a nice warm shower to relieve any stress I had overnight. My anxiety comes out in my dreams lately. I’m always losing something or getting lost in my dreams, so I wake up in a heightened state. It takes some coffee and a hot shower to calm my nerves and put me in a good place to start my day of caregiving.
NO NEW LUNCH I get Mom lunch around 12:30 pm every day, so she can eat while she watches her soap operas. She’s watched the same show for almost 50 years, and as I mentioned before, she craves, no — she needs routine. Her lunch is always the same. Chicken salad sandwich, macaroni salad, and chips. Her cat, Simba, is her constant companion. She remembers him, but barely remembers me!
I don’t always eat lunch. But, when I do, it’s usually a salad with some nuts, fruit, and cheese on it. Sometimes, if my husband is home, we get a carryout lunch and take a long afternoon break.
ON THE GRIND I run a business doing copywriting, editing, and virtual assistance. Many days are difficult to maintain a balance between trying to get my work done and tending to my mom’s needs. She gets highly agitated some days, and it seems every time I try to accomplish something professionally for the day, I get interrupted.
If she has an appointment, we usually schedule them in the afternoon, so some days we have doctors’ appointments. I also do laundry and clean in the afternoon. I want to grow my business and be more financially productive, but being an Alzheimer’s caregiver is a full-time, all-consuming job. It leaves little room for anything else.
Some days I get so frustrated that I’m tied down to caregiving and can’t be the successful businesswoman I want to be. Other days, I feel grateful that I have this time to give back to my mom. I’m an only child, so everything truly falls on me.
BEAUTY THROUGH ALZ I see glimpses of my mom some days. I hear her singing songs she loves and watching baseball. So, once in a while, I forget the disease that ravages her from the inside. When it’s nice out, I take her for a ride to the lake. We sit in the car and watch the boats and the birds. It’s a welcome distraction for both of us.
TAKE OUT My husband is usually home from work by 5 PM, so sometimes, I’ll start dinner; sometimes I wait for him. Once a week we get takeout. Mom likes her dinner in her TV room. She’s been having swallowing issues lately. She had some tests done right before COVID-19 took hold. They found she is just starting to have the swallowing issues that plague Alzheimer’s patients. I’m not allowed to give her a straw anymore, and I need to be vigilant when she eats. I’ve noticed she gets pickier and pickier as the disease wears on. Things she used to like she hates, and vice versa.
EVENING COOL DOWN To be honest, most days, I am so emotionally and physically exhausted that I just read and watch TV; spending time with my husband and dog. When the weather is nice, I try to get outside and sit by our pond and relax. It’s a good way to put the day behind me.
UPS AND DOWNS Every day is different. One day, it’s like my mom is here and everything is normal. The next day, I find her in a wet, soiled bed covered in urine, and the day just goes downhill from there. My dad passed a year ago, and she doesn’t remember. Last night, she called his name. It’s difficult to mourn my dad and try to move forward when Mom is stuck in the past and in a world where Dad still exists. I’m just happy at the end of the day to have my husband here as support, and happy to have gotten through another day.
LESSONS LEARNED Many nights, as I go to bed, I reflect on the day. I think about what went right and what went wrong, and what I can do the next day to be and do better. One lesson I learned this past year is to allow myself to feel whatever emotion I’m feeling-without judgment on myself. It’s easy to feel lonely and isolated as a caregiver. Talking to my husband, allowing myself to cry if I need to is all I need some days to just get it out. Get it over with and move on.
Read last week’s caregiver feature about Nikki, who has been a caregiver to her mother for 10 years.