Life changes in a major way when we sign on to be a full-time caregiver, especially when we already have a full-time job. Everyone tells us the importance of a healthy work/life balance, but this can feel so out of reach when time at work starts to feel like the most relaxing part of the day. Unfortunately, this is the point I have reached.
My job demands much of me, often more than I can deliver in a standard 40-hour week, so I frequently log 50 or more hours. When I first started as a caregiver, my requirements were minimal. My mother was still fully ambulatory, able to prepare her meals, go shopping, and do her own laundry. My biggest requirements were yard maintenance and upkeep of the house and property. This has all changed over the last year.
All of the things that she used to do… I now do. In any 24-hour period my day starts when I hear my mother wake (via the baby monitor on my nightstand), usually somewhere between 4:30am and 6:00am. I spring up and hurry to her room to reassure her that I’m there to help her out of bed. Mother has extra difficulty standing, so I lift her and help her to the seat of her walker – it’s one of those that has wheels and a seat, which is very useful these days. I take her straight to the bathroom to take care of her morning necessaries. She has an ileostomy and, so far, is still able to handle her own needs in that area. When she’s ready, we get her seated on the rolling walker again and I bring her to the living room to her favorite chair to start her day watching Gunsmoke, or perhaps Dr. Phil. Then I bring the baby monitor camera unit out to the living room to be able to keep watch on her as my workday starts.
Through the day I ensure that her needs are met; meals, drinks, bathroom trips, helping her change position, or move her between the chair and the couch. When she’s in the living room, I must keep the volume down on the monitor display system that is now at my desk next to my monitor. There’s no way I’d be able to focus on work if I had to do it while listening to Dr. Phil badger another one of his collection of people at the end of their rope. I try to focus on the monitor every few minutes to see if I can see any signs of my mother needing assistance. We’re still trying to get to the point where she remembers the monitor and waves at the camera to get my attention – but we’re not there yet. She does have a sports whistle within reach that she uses and when she needs me, she will blow it until I show up.
The whistle is a mixed blessing. For example, the other day I was deep in my morning meditation and I heard her frantically blowing the whistle. As you might imagine, I jumped up and hurried out to the living room to help her. When she said, “My TV won’t turn on…” all I could do was smile, press the right button on her remote control and ask her if there was anything else I could help with. To do my job well as her caregiver, I need to remember that what is important to her, is important to her.
We’ve built a habit of an 8:30pm household bedtime that she grudgingly accepts, which allows me time to get a reasonable amount of sleep even on the more difficult nights. We get her to the bathroom and then in bed, placing the monitor in her bedroom again and the receiver on my nightstand. During the night, usually a minimum of once or twice. she will need to get up for a bathroom trip. She doesn’t remember to call for me yet, but the sounds of her struggling to get out of bed will wake me and I go help. Once I’m back in bed, I find it takes 30 minutes or more to return to sleep. And then, sometime between 4:30 and 6:00am, we start again.
I understand that there are so many caregivers out there who have much greater struggles than I do; every situation is completely unique. As a traumatic brain injury survivor, I often struggle with things others don’t. Probably the biggest struggle for me right now is that I need more sleep, but it’s simply not an option these days.
I deliver a 40 to 50 hour work week on average and yes, I recognize my good fortune in the fact that I can do this remotely and serve my mother’s needs as well. Then we factor in a girlfriend who, quite justifiably, feels significantly shorted on how much time I can spend with her. Of course, there’s my son, who sometimes needs help, and who I like to just visit with when possible. The area that suffers the most is friends and recreation. I have no time to be social, to go hang with my fishing buddy, or for that matter, even to go fishing, hiking, or camping.
At the end of this list, there’s me. Finding “me” time isn’t an easy task anymore. I’d like to build a habit of going to the gym, but there are many days when it’s simply not possible. I ended my last gym membership after paying for 24-hour access that was seeing less than 2 hours a month of use. I’m trying again, but it’s not looking positive. I’d love to go walk along the lake on a blustery day or find a nice camping spot alongside a river and wake up to grab my fishing pole. It’s just not in the cards.
How do caregivers find a work/life/caregiving balance? I don’t really know, yet. This, quite honestly, *is* my first rodeo. I am lucky enough to have a few family members who, when they are able to, offer to come sit with my mother to give me a little time away – I’m so thankful for this, and it has helped me to clearly see the value of an occasional break. I’m doing research to find some in-home care services that can allow me to take a day away, or maybe even a couple. I know there are options, and I’m looking.
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