5 Things No One Tells You About Being A Caregiver

I have spent the past several years caring for my mother in home as her dementia slowly progresses. A few short years ago my mom was a ball of energy. She spent her days cooking amazing meals and chasing her grandson around the house. Today she has trouble walking and doesn’t always know how to hold a fork. Being a caregiver has changed my entire outlook on life. For better or worse? Well, that depends on the day. Some days I can easily find the joy in life regardless of my situation. Other days I want to crawl under a rock and sleep for weeks. I’ve spent a lot of time lately thinking of my mother’s illness, my caregiver role, and the affect it has on the family and close friends in my life. There will come a time in most of our lives where we will either become caregivers or need a caregiver of our very own. I’m no expert on caregiving. I’m a student. I learn something new every day and it’s not always pretty. There are many misconceptions and notions about being a caregiver and I wanted to share my feelings in this blog because it can be very very difficult to share them in conversation. Again, this is MY experience. Yours may be completely different. These are the five things no one tells you about being a caregiver: 

1. The isolation. I spend my days working from home in order to care for my mother. Once my husband and son leave for work and school, it’s just my mother and myself all day long. Let me be clear: I am blessed and lucky to have a job that allows me to work from home for extended periods of time. I know this. That doesn’t mean it’s easy. No one is beating down my door to hang out with Dementia Lady and her sidekick. When my phone vibrates with a text or incoming call, you bet your ass I’m diving for it. That’s my lifeline to the outside world. I’m sure as hell scrolling through my Facebook feed as well. Who wants to read about the ham sandwich you ate for lunch? Me. I do. It’s a distraction. You can even tell me about the Dijon mustard you put in there. I’m all in. I’m a social person at heart and social media rocks. Facebook and Instagram drama exist, but my daily drama is worse. So please, check in to that car dealership and tell me you’re about to get an oil change. Hope you get a free car wash, too. 
2. The level of exhaustion. Ok, yes, I imagine you realize that I’m tired. Maybe that’s not a newsflash. Remember the story of Rip Van Winkle? I’m jealous of that dude. I’m jealous of a fictional character. He slept for twenty years!!! Twenty!! Can I get three hours of sleep? Three hours of uninterrupted sleep would be a dream come true. 
3. I am questioned more than an FBI suspect. No lie. “Omg, why isn’t your mom in a nursing home?” “How can you do this to your family?” First of all, my mom is a member of my family. There may come a time when I sit down with my husband and son and we discuss placing my mother in a nursing home. I cannot predict the future. Placing a loved one in a home is a difficult and arduous decision. I’m not ready to do it yet. Is it stressful changing and feeding and walking my mom every day? You bet it is. Is it tough on my family? Oh, yes. But my husband and son support me every step of the way. I don’t expect people to fully understand, but the judgement is unnecessary and uncalled for. I’m simply doing what is right for me at this particular time. 
4. My body aches. I don’t need pity. I don’t want pity as I have made the choice to take on this caregiver role. The toll dementia has had on my mother is far greater than the toll it will take on me. However, that being said, my muscles and bones pop and crack like I’m a 92-year-old woman. Some days my mother walks perfectly fine. Other days I have to lift and carry her to her wheelchair. I never know what I’m getting. If you see me walk past you in the grocery store and wonder why I’m limping, don’t. That’s just the way I walk now. You should see me run. Pull up a chair and pop some popcorn. It’s a good show. 
5. I feel like I have four different lives. One life revolves around caring for my mother and being available to meet her needs. One life is the role I take on in my family, being a wife and mother. Life number three is the way I present myself to my friends. I adore the friendships that I have but sometimes I’m so overwhelmed by my daily life that I can’t connect with others the way I used to. I struggle at times to be happy, fun Katie because it’s too exhausting. Finally, life number four is just me. That’s the hardest life to live. I feel inadequate as a daughter, mother, wife, and friend. Forgiving myself for the mistakes I make daily is damn near impossible but I have to learn to do it. I’m stuck with me for the rest of my life. Better make the most of it.

For better or worse, this is my life. This is my experience. If you’re a fellow caregiver reading this, take my words with a grain of salt. My deep dark secret is that I don’t know what the hell I’m doing. Im just living this life one day at a time.