With a mere two trips to the hospital under my belt, I now feel the need to become a patient advocate specialist. Wow, did we learn a lot. Some from experience, most from other patients and their families. If you ever go to the hospital, make sure you ask around to determine your rights.
The first night in emergency, the staff convinced me that I could not leave My Mom unattended because of her dementia. This would include sitting with her throughout the night. She was on the list for a room, but they had 50 people waiting for beds. I will admit, because of her condition, they were kind enough to keep us in a room in the ER ward. I told the nurse on duty that I didn't mind staying and keeping My Mom calm for the duration, but we arrived early morning, it would be great to get a bite of dinner before I pulled the all-nighter. She overwhelmingly agreed and actually encouraged me to run out for decent food. "We'll pull your Mom's bed right here in front of the nursing station where we can keep an eye on her while you're gone." They did and did it well, but she never explained the consequences! My Mom and I lost the room! Someone else was wheeled in the moment she was wheeled out. I now not only had to sit with My Mom for a very long night, but in a bright hallway with 50 other patients waiting for a room. Ugh. I squawked enough that we eventually received another room.
When we eventually moved up to the fifth floor, I met my first little helper. My Mom's roommate. It was super sad because she's at the hospital way too much for a young mother, but she knew the rules quite well. It turns out the hospital provides sitters -- if you know to ask! How bout that? I didn't have to sit there through the night. Of course I ordered sitters pronto. That came with it's own challenges. First, every shift has their own "policy" for sitters. Some say it's okay to give a 30-minute notice, some say in a militant way they must be on duty for the duration even if family is in the room and some say sitters must be ordered by the doctor. My concern wasn't how the sitter got there, but whether he or she was competent. They work in four hour shifts. After just one day on site, I realized I needed to be present at the beginning of each shift to see who arrived for the job and if I could trust the person. Please trust me, I wasn't being picky.
It clearly states on My Mom's chart that she has dementia. It's why she needs a sitter. I came in the very first full day on the real floor to find someone yelling at her. "What's the matter?! Don't you know how to use a fork?!"
"Sometimes she does and sometimes she doesn't," I said as I pulled the curtain. "It's one of the challenges of her disease." You would think this gal would be mortified that I caught her in a moment of frustration. Nope. She complained. "Well she won't eat. She won't even eat the pudding." I sent her packing, then sat and watched as My Mom ate the whole dinner. In the hospital's defense, we had a couple of amazing people too. The problem was, it was always a gamble. So, even though I discovered we could use a sitter, it didn't provide much rest.
I complained about the inconsistencies to friends.
Beaumont posts a mission statement right in the lobby: To provide the best care possible to patients ... and with dignity. The only way I found effective, efficient and compassionate care was to plant myself on site 24/7. I blamed the situation on 'the system' not being prepared for dementia patients. A friend quickly corrected me. "It's the same for all patients," she said. "When you're that sick, you're equally out of it." She was right. If you're ever really sick, make sure someone peeks in at least periodically to make sure you're getting adequate care.
Hospitals are one of the biggest conglomerations in the country these days. Filled with bureaucratic red tape. It's all about the bottom line for big business. These places are over worked and under staffed. Sometimes a true caregiver can't even help you if they want to.
And that's when my friend hit me with the biggest whammy:
This is the sad state of our care institutions before socialized medicine.