I’m sure during your caregiving journey, you have heard about “caregiver fatigue.” Well, a few months ago, my caregiver fatigue hit hard. The impact of multiple culminating events lead to my worst young caregiver day, and I completely lost my patience. The calm demeanor that I try to keep when I spend the day with my mom, gone. The lingering feeling that I could have changed my actions and my mom could not is weighing on my conscience.
I debated with myself on whether or not to share this post. Sharing how I lost my patience doesn’t exactly paint me in a good light. The post is also lengthy because the day was very long day. That said, it does show how difficult caregiving can be, and the impact caregiving fatigue can have on us. Ultimately I have decided to post it – obviously. My hope is you, as the reader, will learn from my mistakes or will cut yourself some slack. That you will know you are not alone if the day ever comes that your caregiver fatigue sets in and you lose your patience as a young caregiver.
Are you ready? Here we go!
The Beginning- Before I Lost My Patience
Let’s talk about what happened and how the build-up of events contributed to my caregiver fatigue and led to my lost patience. The day started by giving my dad the day off. My dad is a hunter and had booked a trip with a friend to go quail hunting for the day. My dad doesn’t normally ask for days off to do stuff that he enjoys, so I jumped at the chance to offer him some relief and respite. I took the day off from work and drove down to my parents’ house the night before to be there when my mom woke up. My mom and I had a plan to run multiple errands that day, so I talked with my mom about all the things we had to do.
Errand 1: Paperwork
We had to fill out some forms for the final part of her disability insurance renewal for the year. This included driving the Records of the Information Office about an hour from where my parents live, filling out the two forms, and handing in the insurance packet. A longish drive for about 10 minutes of work: when we arrived at the office, they noted that the hours had changed for the day, so my mom and I had an hour to kill. We found a Starbucks where we each ordered a drink and split an order of egg bites. We then drove back to the records office and waited for about 30 more minutes until they opened. When the doors opened, we picked up the forms and completed the paperwork. One task done.
Errand 2: Get Mom’s Ring Re-Resized
It took about another hour in the car to get to the jeweler. Car rides with my mom aren’t bad; they are just really repetitive, and my distractions were not working. We talked about the plan for the day multiple times. At each stage, I explained what we were doing, where we were going, and why. For the ring, my mom was having a difficult time understanding. The ring fit on her right hand, but not her left. The way she enjoyed demonstrating this was to put the ring on her left hand, turn her with her fingers pointed down, and shake her hand, so the ring jiggled, almost to the point of falling off her knuckle and her hand. This didn’t make me anxious at all!
Then she would say, but it fits on my right hand. Most of the car ride, she vocalized her problem solving by moving the ring and putting it on her right hand, saying it fits, only to be reminded that we needed the ring to fit on her left hand. My mom continued this movement of the ring from one hand to the other in the car the entire ride. I can feel myself getting worn down from explaining the same thing over and over, the caregiver fatigue setting in. I have been sucked into reasoning with my mom, and there is no reasoning with an Alzheimer’s patient.
We finally get to the jeweler’s plaza. As we look for where the jeweler is located, we can’t find the door’s name. Now I am starting to get frustrated because this task should not be that hard; we look for about 5-10 minutes to find the location before finally finding it. When we get to the jeweler, he recognizes my mom. About a month prior, she had some work done to her ring, which is where we think the mis-sizing happened. Baffled at the ring size difference and working through the problem, the jeweler talks to my mom about different steps taken last time she brought the ring in. Finally, we come to the determination of the appropriate ring size.
I think we are done and can move on to the next errand, and then the jeweler asks, “So how is the COVID stuff going in your area with this second shutdown?” This leads to another full conversation with limited pauses to allow for a breakaway.
The only way that I can think to describe the situation is when you were a kid in a store with your mom and she happened to run into a coworker/friend and begin chatting. You can’t go anywhere because you are too young. Still, you also aren’t contributing to the conversation, so you have to stand there; that was the jewelry appointment. I was expecting this to take about 15 minutes max, it took over an hour!
Finally, the conversation hits a lull, and I rudely say, “Okay, mom, let’s go. I’m hungry,” to try and get us out of there. We finally leave and get back to the car.
Errand 3: Target
Next stop, Target. My dad had requested we pick up some food saver bags for him, and my mom said she needed socks. We were both hungry, but my mom said Target first, then we could pick up lunch after. In and out of Target in 45ish minutes, we get our items and head over to get lunch. We are now about 6 hours since we have eaten last.
The Lost Wallet – About To Lose My Patience
As I am working through processing the lunch and dinner orders on my phone and asking my mom what she wants, then my mom says, “I lost my wallet.”
Okay, no, biggie, this has happened before; it is probably in the giant purse that she has that can carry three laptops and charger cables and is stuck/hidden within the loose fabric. I hate her purse btw. She goes through her purse, and the wallet isn’t there. Now she is panicking. I ask if I can check her purse, and she states, “I just had my wallet.” She hands me the purse, and I look, no wallet.
Now I am panicking. I should probably note here that my mom isn’t one to sit quietly while others solve problems. She likes to verbalize her panic – not helpful! So as my mind is racing and I think the wallet has been left at Target and gone forever (this is before we had Tile), I ask my mom to step out of the car so we can look around her seat area.
I continue to search and can’t find it. Patience going in three, two, ONE!
Fatigue Sets In – Patience Is Lost
In one last attempt of frantic looking for the wallet, I recheck the bag, and this time, anger has set in. My mind has already processed that if the wallet is gone, the responsibility of replacing all items in the wallet will fall on me. I pull open every single pocket of my mom’s purse and begin chucking out things that are getting in my way . . .a pair of gloves, extra masks, an empty cloth cardholder, a cloth bag filled with who knows what my mom has decided to keep in it. I throw the items with all my might, rage, and exhaustion onto the floor of the passenger seat as my mom stands outside the car with the door open watching me. No wallet. I curse and lift the purse saying we need to go back to Target!
Then I see it, there, between the seat and the console slipping deep down next to the seat belt buckler, is the wallet. I pull it out and hand it to my mom. She gets back into the car, and I say I am going to grab our lunch. As I am walking down the parking lot to the restaurant, my brain lets out a fuuuuuuck. Shame and embarrassment fill me. I just treated my mother, who has a mental illness, like shit. While I never pointed my anger at her, I knew she had internalized it.
Trying to Make Amends
I grab the food and return to the car. From about 50 feet away, I can see my mom wipe her eyes hidden behind sunglasses with the window rolled down. I approach the car, and the first thing I say is, “I owe you an apology.” I try and explain, making sure not to justify my actions because I know they were wrong. My mom says okay. I get into the car, and we eat lunch. My mom seems to be doing okay; the tears have subsided. We are both feeling better now that we have some food in our systems and I suggest going into two more stores to browse because I know my mom doesn’t get to go into them often. In and out, we go buying a couple of unnecessary items. All seems well.
The Care Ride Home
We are both quiet at this point, allowed to melt into our own thoughts with the radio in the background. Out of the corner of my eye, I see my mom take her sleeve and wipes her eye under her sunglasses. She sniffles. I ask what’s wrong, and she won’t respond. Trying to get the information, I ask if I did something else, and she won’t respond. I ask if she wants to talk about it, and she says no. I ask if she wants to yell at me, and she says no.
The silence has allowed my mom to process internally. I don’t know exactly what she was thinking, but I can imagine. My mind spins with ideas of her thoughts; she feels like a burden, fear of what is ahead, frustration, anger, sadness, what she will miss, what she is missing, how drastically things have changed in two years.
One Last Errand
As we pull into town, I see she has collected herself. We have one more stop to make at the grocery store. We make some small talk as I park in the parking lot. I turn to her and say we have two items to get. Does she want to go with me? After a little back and forth, she asks, “Do you want me to go with you?” I respond, “Yes, of course, I do.” We get out and head into the store. As we approach the freezer section, my mom says, “Oohhhh can we get popsicles?” Three boxes of guilt popsicles and our two originally planned items later, we check out of the store.
As we put stuff away in the car, my mom freezes; she looks at me and asks if we already paid. I tell her we have, and she responds with, “Oh shoot, if I had known we were going to the store, I would have added something.” I ask what she needs; flustered and embarrassed, she whispers she wants GasX. Then she tells me she doesn’t have any money, so she can’t buy it anyways. I tell her I will buy it, and we run to Rite Aid.
As we start driving home, things seem to be okay; mom’s mood has perked up. We have ice cream and dinner. All seems well.
The Alzheimer’s Ticking Time Bomb
I have put all the groceries away and settle down on the couch. I ask my mom if she would like to watch a movie with me. She sits down for a second, then gets up and disappears. And then I hear it, the garage door being shut softly. I wait a minute because sometimes my mom thinks the garage door will lead her to the bathroom—no new sounds. With a groan, I get up, knowing what I am about to walk into, and I am not sure I can handle it. I push my caregiver fatigue aside and focus my love on my mom. I open the garage door and find her crying. My instinct is to ask why she is upset, and she won’t tell me. I ask if she will at least come inside where it is warm. After some convincing, she agrees and goes into our den sitting in the only chair in the room. I sit on the floor.
Navigating The Tears
I ask her to tell me what happened, what’s wrong, what did I do. After some back and forth, we end up in our normal blaming circle. My mom believes my dad and I don’t include her in planning. Once again, this is hard to hear because we do nothing but include her in the planning; she just never remembers. After we make some progress, my dad walks in the door. Great way to come back from his respite day off. He sees the situation and asks what is wrong what happened. My mom says, “Nothing.” Dad, “Doesn’t look like nothing.” Silence.
Dad walks away to put some stuff in the kitchen. I look at my mom and say, “I could use a glass of wine; how about you?” She says no, but she would like her tea. I get up and grab it for her, making eye contact with my dad that explains it all. We both know my mom is listening to see if we are going to talk about her. I walk back to the den and give the tea to my mom.
Sometimes You Need A Glass Of Wine
After a little chatting, I tell her I will let her be for a bit. My dad is still in the kitchen, so we start talking about his day and his hunting. My mom comes out from hiding, not wanting to miss out on the conversation. She sees me, wine bottle in hand, ready to pour a glass, and says, “What are you doing?” I tell her I am going to have a glass of wine, would she like one? Grin on her face; she says, “Yes, Please!”
The distraction has come, and the mood has shifted. My dad talks about his day, and my mom and I share the positive parts of ours. Family takes the win over Alzheimer’s.
Situation & Self Reflection
It wasn’t until later when I was texting my boyfriend, that I evaluated the situation. My mom and I had done a lot that day, including some fast-moving pieces that I didn’t have time to explain two, three, or four times. We had done far more in one day than mom had done in months. After realizing this, I concluded that my mom had experienced sensory overload.
Unable to vocalize the experience to me, I began analyzing my mom’s responses that day to my own personal experiences of long days with sensory overload, realizing they were the same; unexplainable emotional breakdowns from the exhaustion of social engagement.
Coming to this realization, I have just added another tool to my toolkit. The planning will have to change, and I will have to be the one to make sure outings are planned properly. There it is again, the role reversal. The child, caring for the parent and finding ways to limit the impact and provide them with a better life.
Call To Action
Wow you are still here! I’m impressed because I know that was long. It was a long day, as many caregiving days can be or sometimes just feel.
So here is my question to you, am I alone in this? Have you experienced caregiver fatigue? Have you lost your caregiving patience? How have you had a day spiral so bad that you can’t get out of it as my day did? Have you ever felt the victory of beating Alzheimer’s?
Share with me, share with others. Write a comment below. I want to hear your stories. I want others to read them too. The long days are the hardest days.