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My Caregiving Experience

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I enjoy my work for many reasons. It has meaning and purpose. I enjoy how much I am able to help other people through my own experiences. I remember when my family was in the same shoes that many people find themselves in today. My grandparents were in their 80’s. Grandpa had stopped driving and Gram never learned. Neither was physically active. My Grandfather had macular degeneration, reoccurring skin cancer, some hearing loss and Gram had high blood pressure, high cholesterol and vascular dementia.

Grandpa had developed cancer and my mom was working, taking care of me and my brother at our house and running my grandparents to doctor’s appointments, grocery shopping for them, helping with some cooking and cleaning and assisting with the laundry. As Grandpa’s condition worsened, he started the hospital-rehab-home cycle and we noticed just how prevalent Gram’s dementia had become without him home to compensate for her. I moved in to act as a live in care giver to look over Gram and be ready to watch over Grandpa when he returned home. Each day with Gram was the same in some ways and very different in others. She would get out of bed, head to the bathroom to wash up, head downstairs, turn on the space heater, put some water in the microwave for tea, put some toast in the oven and an egg on the stove for breakfast. Then she would get the paper and sit down to read it until I came downstairs. Then she would move into the living room, turn on the TV, put a blanket on and watch her morning shows getting up every now and then to use the bathroom. Come lunch time, she would make a sandwich, look over the paper and then return to the TV. At dinner, she would heat up some pizza, eat, put on her nightgown and go back to the TV. That was it. That was her routine.

When Grandpa came home, he was weak from his experience in the hospital and pretty tired from his experience in therapy. I started to watch over both of them and make sure that they were able to make it to the bathroom and get downstairs to their respective chairs and that they were eating. Because Grandpa couldn’t see well, he did a lot with his hands. He would feel for the coffee pot, the filter and the coffee container. Sometimes he would have enough light at the dining room table to read the “funnies” and other times he would ask us to read them to him. When he couldn’t see anymore, he would tell us jokes, always starting with, “did you ever hear that one about…” and we would always say, “no, I didn’t, what was it?” When he would wash the dishes (this was always his job), he would cautiously reach into the soapy water in search of any sharp objects to wash first. Then he would finish, wash his hands and get out his two magnifying glasses tied together with rubber bands, turn on his counter lamp, take out the paper and do the crossword puzzle. After Gram went to bed, he would find his way into the living room with the big screen TV (purchased just for him), a Piel’s (beer) in hand, and find a recorded tape of the Polka Jets to play. He would listen to the music and try to watch them dance as best he could. When he finished for the night, he too would head up to bed and snore the night away.

I lived with my grandparents for almost two years. They had always only lived about a mile away and when they and I were young, we would sit on the porch and watch the cars stop at Turkey Hill or we would go into the backyard and look at the flowers and vegetables in their gardens. Sometimes we would even walk downtown to the store for a juice or stop at the restaurant to meet Aunt Wilma, picking up every quarter or penny we saw on the sidewalk because, after all, that’s how they made their money.

After a couple months of cycling through the hospital-rehab-home, my Grandfather fell ill and couldn’t recover. He passed away in the hospital while my mother and aunt were on their way to be with him. He and Gram were married over 50 years. She was in the nursing home for rehab when he passed away. I was at her house waiting for her to come home again. When she finally did, we saw just how prevalent her dementia was when my Grandfather wasn’t there to compensate for her any longer.

Eventually, she couldn’t remember all of the steps of her morning routine and my Grandfather wasn’t there to remind her. But I was. Some days, even with encouragement she couldn’t remember to eat all of her breakfast. Most days, her purse was tucked into her recliner, under the blanket with her. Other days, she couldn’t find it. Some days her teeth were in her mouth, and other days she had wrapped them in a napkin to take a nap and they were somewhere under the couch, unable to be found. Most days she would walk into the kitchen to fetch a glass of water, as per my suggestion that she should stretch her legs and stay hydrated, and she would come back empty-handed. We were fortunate enough to have assistance from an in home caregiver a couple hours a week for bathing, dressing and light house duties also known as Activities of Daily Living, or ADL’s. She had an envelope of money that went missing one day and it was ‘definitely the direct result of having a caregiver come into our home’. I later found it in the one of the kitchen cabinets. Before we had the caregiver she would try to wear the same clothes for a few days in a row and they never matched. Her glasses were always missing and she was asking the same question every couple of minutes. This question usually came in the middle of the summer, mini heater blaring toward her, blanket on her lap, “Aren’t you cold in those shorts?” “No, gram, I’m actually trying to figure out if I can somehow wear less clothing…”

Every time I was away from the house and my phone rang, I thought it was my mother calling to say that something had happened to her while I was gone. She couldn’t use the stove alone, her walking slowed and her shuffling increased which in turn increased her fall risk. All of the carpets had to be removed from the kitchen, wires had to be secured next to the walls as not to interfere with the walking path, steps had to constantly be clear, a shower bench was put into the bathroom, a raised toilet seat, night lights, all of the doors had to be locked and a bell was installed near the door so it would ring when someone came in or tried to go out.

Sometimes I would sit in my room and wonder how I ended up being a care giver at 22, taking care of myself, going to college, working and trying to maintain a social life. Why do I have to be home all night with the baby monitor? Why do I have to make sure that someone else has breakfast and a bath and takes her medication? Sometimes I would yell at my mom when she came through the door simply because I was frustrated with care giving. I felt like I was constantly searching for teeth, glasses, purses, envelopes of money, listening to that baby monitor, making sure breakfast was ready, making sure she was drinking enough water to avoid dehydration, asking her to walk around the house to get some exercise and just feeling plain frustrated and then feeling guilty for feeling frustrated.

But other times, I would look at her in her chair and think, how does she do this every day? She lost her husband of over 50 years who was her rock and her support system. She can’t remember how to make anything besides and egg, a piece of toast and a cup of coffee, she looks at the same page of the newspaper for hours and she sits in that chair all day, every day. What must be going through her mind (besides, Kelsey must be so cold in that tank top and shorts)? What does she have to look forward to? She doesn’t remember to do her therapy, how to find the right button to answer the phone or even how to find the words to have an in depth conversation. How could I be anything by empathetic, forgiving and grateful?

Care giving is not easy and it is a selfless task. It takes a lot to be a care giver and oftentimes we are overwhelmed with emotion. Having a good support network and someone who understands the care giver role can take some of the strain off of everyday tasks. It is important to find hobbies that bring you joy and to give yourself permission to walk away and pursue those hobbies. Just remember, safety comes first and as long as your care receiver is safe, you are allowed to still enjoy your own life. You need to be well in order to help another person be well. Take that time for yourself and remember that you are not alone. And also remember that you won’t always be a care giver. So enjoy this time and focus on the positive.