Stuck on the Wrong Roller Coaster

I LOVE a good roller coaster: Steep climbs, big drops, speedy twists, sharp curves, a couple loops and OVER in less than two minutes, all while securely buckled in with lots of padding. Then, there bad roller coasters, like the ones at the fair or a mediocre amusement park: rickety, more bounce than spin, too many ups and downs, just enough sharp curves to make you loose your lunch, so rough you feel like your neck will break and they go on forever. Right now, I feel like we are stuck on that roller coaster. The ride is no fun and we just can’t get off. We’ll climb the hill, expecting the thrill that’s coming and it ends up just being a bummer.

Our journey with dementia in general has been like a bad roller coaster ride. Good days, bad days, but stuck in the same ‘ole loop. The last week it’s been like we got buckled in and they just won’t let us off. Last Wednesday, everything was going great. It was a beautiful day so some of the neighbors were over playing in the yard, a couple moms, Gran and I were sitting out in the yard watching the kids play. Life was pretty much perfect. Then, the conductor pushed “Go”. Gran started not feeling well, I take her inside, she has bathroom explosions of epic proportions, she starts vomiting blood, and it took all I had to 911 before I passed out. I am not a nurse. I am not Florence Nightingale. I am barely surviving dementia care, and this mess is so far beyond my pay grade I don’t even know what to tell you.

We get to the hospital around 8:30. Tests, tests, and more test. Around 11:30 we still don’t know exactly what’s wrong, but we know she’s being admitted, so I go home and resolve to come back the next day. When I arrive the next day, I see that Room 316 is no ordinary room, it’s the ICU. Okay, surprise number one, but we’ve got this. Pretty much as soon as I got there, we went down for an upper GI scope. Dr. Parker was amazing and came out and talked to me as soon as he did the scope- clear as could be. No sign of any upper GI bleed or issue. We’ll do lower scopes tomorrow. So, back to the ICU, back to waiting while all is holding pretty stable. Again, I go home for the evening. The nurse calls me in the middle of the night and scares the be-jeez-us out of me. All is technically well. I arrived back at the hospital around 7am Friday morning, and we immediately go back down for Lower GI scope. Her colon wasn’t as clear as it needed to be for testing, but in general the lower GI tract seemed to not be the problem. Back up to the ICU. I left around lunch to try and go work while the Gran was going for a CT scan and EKB. And, this is when the coaster started coming off the track. Around 2:00 my phone started blowing up from case workers, doctors, surgeons, and a whole host of people that said important things that really just sounded like the Peanuts in my head. I immediately headed back to the hospital to make a decision on doing emergency surgery to remove blood clots from the Small Intestine, which basically involved removing the intestine, or removing all life sustaining measures and let nature take it’s course. After talking with the doctors and family, and praying about it. We decided to discontinue medical treatment expecting nature to take it’s course over the weekend. And, the weekend comes, and we started climbing the hill. Gran gets better, the doctor no longer feels that the blood clot is the superior mesenteric artery will be the thing that leads to her death. Improvement continues into Monday and we make plans for a discharge to NHC for Rehab, with the possibility of her actually being able to come home. Gran was pretty agitated Monday evening, and the nurse had to call me a couple times. And, then the rough loop comes Tuesday morning. I got to the hospital around 7:00am with clothes in hand with plans to take Gran to NHC in Franklin. Wheels off the track! Gran has an apparent stroke, leaving her speech slurred, totally disoriented, unable to hold a cup or fork, struggling to swallow, and apparent loss of vision in her left eye. NHC Rehab is no longer an option, as she isn’t in shape for Rehab. I regroup with the Pallative Care team and decide what to do now. We again make the decision to remove life sustaining measure, transition to total comfort care. Gran’s insurance doesn’t cover resident hospice, and I’m not comfortable bringing her home. Thanks to some unsung heroes at St. Thomas West, we are granted a room for in patient hospice at Alive Hospice in Nashville. It truly is a holy place. Gran got moved there about 3:00 yesterday afternoon.

She’s been in and out of consciousness the entire time. She did talk to hers brother and sisters that came to visit. She talked to me this morning, and even appears to be able to see some. So, we continue this roller coaster ride. I honestly don’t know why Gran is still on this earth. She’s suffered so much. She so desperately wants to die. She even says that on her good days. My prayer is that Jesus would heal her pain and settle her heart and call her home….

Her hands have been like this all morning, I can’t help but wonder if she’s praying to get better or praying her way into Jesus’s arms.

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