I moved from Texas after 17 years to come home to take care of my mom.
My stepfather passed away, and a year later my only brother passed. My dad will have been gone now for 30 years. I left a solid job, and started over to come back to take care of her. It has been 5 years now, and in that process I have had to move into her house, since she has moments when she gets scared when her heart beats too fast. I live in an unfinished basement with no real windows, and a slanted floor. I have done my best to set up the basement with plywood partitions. I do have a toilet down here, but I have had to set up a shower that is at the bottom of the outstairs basement entrance. Amazing what one can come up with when you live with a person who stays up all night and sleeps through the day. She was an artist, and that was her schedule. She does not have a living room with a TV. She sits at the dining room table and watches TV. I cannot get her Medicare assistance due to the fact that she is not in a wheelchair. The strange thing is that she has COPD, a pacemaker (She had 14 heart attacks and was legally dead 4 times in 74), and can barely move back and forth to the kitchen without being totally out of breath. She had her defibrillator turned off a couple of weeks ago, since she just want to die in her home. She refuses to use her C-Pap machine due to the fact that she is claustrophobic. I hear this almost every day. She was an awesome mom when I was growing up, but this is not the person that raised me. It breaks my heart to know that even though she loves me, she is not that woman anymore. I have tried to offer ways to help her, but she gets very upset with me, and makes excuses as to why things should stay as they are. I work from home selling on Etsy, because I have developed my own health issues, both physical, and mental. It takes me two days to recover from just giving her a bath, cutting her hair, or trimming her toenails. She has too keep every bill that she has ever paid, (they are in rubber bands, and stacked up). This also includes every magazine also. The basement I live in is not only my studio, but it contains everything that she ever had, including boxes of things that she always tells me that she didn't get in the move.
So I go digging for them, and then show her, and then she looks at them, and then I have to take them back to the basement. She sleeps at her table during the night, and I never know when she is going to get up, but to be honest (guilt here) I dread it when I hear her feet shuffle to her bathroom and I panic when I don't. I feel trapped in my own personal hell. There is no help, no joy, I am beginning to feel numb one day, sad one day, and angry on others.
I just wanted to thank you all for this site. I have read a lot of your stories, and it has helped me to not feel so alone. God bless and keep you strong.
I also just recently found this site and feel so grateful for it. My story is similar to yours in some ways. In August I came back to my childhood home on vacation to visit my dad, and realized that he had been hiding his inability to care for himself (he has COPD as well). What I thought was going to be a 2-week trip has turned into nearly 3 months as we explore options, and in the meantime I'm away from my partner and animals who live 2000km away in our home. I also work from home so am able to work from here, but like you I deal with my own physical and mental health challenges too. I don't know if this is your experience but for me some days it feels like everything I need for my own wellbeing has become irrelevant and I really worry about the toll it's taking on me.
I really relate to what you're saying about "I dread it when I hear her feet shuffle to her bathroom and I panic when I don't." I feel the same way, especially overnight. I resent how little sleep I get because I'm awake at all hours monitoring him, and I feel guilty for being resentful. It feels like torture to me some days. My dad, like your mom, can't take a few steps without getting out of breath. Right now he's sitting still at the kitchen table while I'm in another room, and I can hear that just eating breakfast has made him breathless which is incredibly upsetting and distracting. Days like this I feel trapped too. I've been working away at finding support options but it all takes time. I am lucky in the sense that my dad is receptive to help in ways it doesn't seem like your mom is - I'm so sorry you have to deal with that on top of it all!
Just wanted to reach out and say you're not alone! Happy to talk more about our experiences if that's helpful.