u/Far-Possession-1273

I have 3 privately hired caregivers for my grandma. Between the 3 of them, they cover 10-20 hours per week while I work out of the home. (Started as 1 woman and she brought on two others when she was unable to work as much) The rest of the time, I am working remotely and caring for grandma.

They all interact with her well and are very patient. They do puzzles, color, watch TV, listen to her stories. When it’s meal time, they fix her simple meals and eat with her. They listen to her stories and she is always very friendly with them.

However, I’m kind of feeling like I’m paying them for nothing. Yes, it gives me a little break mentally and allows me to get out of the house. Good socializing for my grandma. But they don’t help her in the bathroom (she uses the toilet but needs help wiping) don’t do her laundry, don’t help her get dressed. These are things we discussed when they were all hired. Their excuse is “she doesn’t let me” but I have cameras and I know that they do not try. Additionally, they are pushing my personal boundaries in really surprising ways- criticism of me, my home, entering personal spaces that have nothing to do with my grandma, etc. I address it each time a boundary is crossed, but it’s nearly every visit now and I’m exhausted and frustrated.

One caregiver will ask me every single detail of everything I do, ask my reasoning, ask how I want her to do it, and then just…not do it, and push back on how I do it.

The caregivers are all 30+ years older than me, so I am trying to be respectful but I’m getting tired of feeling even more stressed and uncomfortable in my home, when the whole point is the opposite.

I pay them directly $20/hour. Agencies in my area charge $30/hour and the worker usually only gets half. I thought I was saving money and supporting people but I’m wondering if these issues would be happening if I hired through an agency?

What is your experience with agency vs private hire?

I ended up going to the emergency room last night for fear of a heart attack. Sharp, stabbing pains in my heart, numbness in my left arm and entire jaw. I was pouring sweat, shaking uncontrollably, and struggling to breathe. I have a history of panic attacks, but this was different.

Loaded my grandma and her wheelchair into the car, got to the ER, and even there, my duties didn’t stop. She needed a snack, drink, she wanted to go home(every 15 minutes), her hands were dirty, she was cold, her butt hurt. I was so dizzy and weak but I had to push her around. I had to get unhooked from my EKG and IV at one point so I could take her to the bathroom.

4 long hours later, I learn I have developed an irregular heartbeat. The doctor said the fact that I’m a caregiver makes her confident it was brought on by stress. Luckily, I have not done permanent damage to my heart yet, but I am at risk.

Her advice? More rest and less stress. Yeah right. Idk how I’m going to get established with a PCP, or find the time for my own appointments but I guess I don’t have a choice.

I’m only 29, perfect physical health before all this.

Get to your own doctors if you can, folks. I know it’s not easy, but this shit takes a toll and we can’t care for our people if we’re falling out ourselves.

Maybe I just need to vent. To be honest, I am desperate.

I care for my 96 year old grandma with dementia. I have cared for her solo for 4 years. I’m 29.

My whole life is my grandma. Her needs, her appointments, her schedule…I know you all get it. I told myself going into this that I loved her and it was worth it…but it’s not. It’s truly not. She was never kind to me when she was younger and in her right mind, and nothing has changed. Everything I do is wrong. EVERY action receives criticism or some sarcastic remark, even simply walking through the room or stopping to pet my dog. It sounds minor, but 24/7, 365, 4 years…it’s not minor. Every now and then she explodes with guilt and tears and says “you are a perfect person!!! YOU ARE PERFECT. WHAT WOULD I DO WITHOUT YOU. YOU ARE PERFECT. YOU ARE WONDERFUL” and that’s just another emotion I have to manage for her.

I don’t care about my job anymore. I used to be top of my field in my city, I taught classes at a college and mentored others and was requested by name by multiple clients across multiple agencies…and now I don’t care. I have no more friends, none of them relate to being a caregiver and they don’t understand that it costs me money every time I leave my house due to caregivers. No one wants to come to my house with my grandma here. I have no time or energy for hobbies, not even TV. My marriage ended. I tried another relationship, also ended. I told my family that I was actively wanting to ~n0t be al!ve ~ specifically due to the stresses of caregiving and I have not gotten help from them. I am invisible.

Hired help comes when I can’t work remotely, but they are a different type of stress. They always want to chat, they act like I am inviting them over for fun. I appreciate their help, but they have crossed numerous personal boundaries with me, but they’re great with my grandma and they are incredibly dependable, so I feel stuck.

I have cried every single day that I have cared for my grandma, and that isn’t an exaggeration. If I’m not crying out of sadness, it’s because I am so angry and I can’t break anything so I cry. She actually fell a few months ago and was in a rehab facility for 6 weeks. I still cried every day because it wasn’t a break. Answering multiple phone calls every day 7a-7p, scheduling visits, monitoring her care, watching her rapid decline, going to the hospital multiple nights because she fell at the rehab facility, etc…it was NOT the break everyone seemed to think I was getting. As an aside…it might sound silly but I have OCD and old people are disgusting. Why are there crumbs and dust and hair everywhere, no matter how much I clean? Why do her fingernails get so dirty when I keep her and everything so clean? WHY IS THERE POOP ALL OVER THE TOILET ALWAYS?!?!?!

Everyone says things like “hope you’re not overwhelmed! Hope things are going well!” And I want to scream. Do they think a 96 year old with dementia gets better? What could possibly be going well?

I used to be such a kind, gentle, and loving person. Caregiving had turned me into someone I don’t recognize, inside and out. I used to use my grandma as a reason to hang on, but I can’t do that anymore. I have my cat and my dog and some house plants and that is truly all I have to get me out of bed every day.

I don’t know how to hope for better anymore. Huge props to those of you who have done more than me for way longer…

Thanks for reading. 😞