Who Would've Known?

After my last post, I wrote a post in my (facebook) FTD online support group. I was seeking advice on how others have handled these kinds of situations, since I know that night waking is very common in dementia. Several people on the post suggested that confusion and disruption such as this could be a sign of a urinary tract infection. Who would've thought?? Never in a hundred years would I have thought that mom's schedule confusion could be attributed to a UTI; she had no fever and no other sign of being sick or in pain. Nevertheless, after reading all of the comments and suggestions, and reading up on signs of UTI in a person with dementia, I decided we needed to rule out the possibility.

The problem is...how do you get a person to go to the doctor when she thinks it is night and refuses to get out of bed? Add on to that my dad is overwhelmed with work right now and is shorthanded and all of my kids are home on spring break! After some investigation work (and thanks to a conversation I remembered having a few weeks ago with a friend about a home test kit for UTI's), I made a trip to the pharmacy and found a home kit for UTI's. Of course I knew I wouldn't get my mom to pee on a strip for me, so I bought a pan to go underneath the toilet seat.

At 6:20 pm, I returned to my mom's house (from the pharmacy) and put the toilet pan on her toilet. I went to her bedside and prompted her to get out of bed and go potty.

"No, no you shouldn't be here so early....only at 6:59 I get up to potty...."

So, as you can guess, attempts to get her to the toilet failed. That is, until it was 6:59. On the dot, mom got up, used the toilet and I pushed my way in to test the strip before she caught on that something was weird in the toilet (she had no clue). A couple minutes later, the test strip read positive for a UTI. My dad emailed her doctor and we made plans to get her into either his office or urgent care for today.

Fortunately for us, her doctor read my dad's email early this morning and sent in an order to the lab for a culture test. Since the culture will take a couple days to process, he prescribed an antibiotic for her to take in the meantime. A quick trip to the lab and I was able to get her a cup; another quick trip to the pharmacy and I got her antibiotics. Though she was already tucked in bed when I made it back to her house, I convinced her to take both the antibiotic as well as some Tylenol (she is feeling a little warm now) by telling her that it was a sleep medicine. The only problem now is waiting for her to get out of bed this "morning" (which is really 6:59 this evening) to go potty and collect her urine sample.

What would we have done without this support group? We would've never known...until it turned into something more serious. UTI's, if left untreated, can result in blood infections and can be life threatening. Hopefully we caught everything in time to avoid anything else too serious. I am hoping that once the infection is gone, she will be able to get back into her regular routine and her confusion will be lessened. I suppose only time will tell.

Mom’s Urgent Care Visit

In my last post, I talked about mom’s ongoing stomach issue. By this weekend, mom was still throwing up. She was unable to hold anything down. I’m not a doctor, but I know enough to figure out that mom was dehydrated by this point. I told dad that she needed to see a doctor. I think he was afraid he’d take her down there and they’d just send him home (since no stomach issues have been found at previous visits) but I explained to him that she is most likely dehydrated, having not held anything down for a few days. By yesterday afternoon, dad was ready to take her in. But mom, much to our surprise (she normally loves the doctor), was very resistant. Dad fought with her for a good 20 minutes or so, to no avail.

“No there’s no doctors open on Sunday. I want to lay here, no. I’m not going.”

I talked to my very-frustrated-dad on the phone and told him I’d be right over to see if I could convince mom to go. My back up plan was to my call my Aunt Sharon, who is a nurse, and put her on the phone with mom to tell her she had to go. Fortunately, it didn’t get to that point. By the time I pulled up to dad’s house, mom was sitting on the couch ready to go.

“I don’t know what kind of hold you have over her, but as soon as I said Cassandra was coming over she jumped out of bed and was ready to go…20 minutes of fighting and that’s all it took,” dad explained to me, as I walked in the room. [I have to confess, that made me feel a little bit good inside…like the kind of good when you walk into a room and a baby reaches for you and wants you to be the one to hold them].

“Mom, we’re taking you to Urgent Care,” I explained to her.

“What? I didn’t know the doctor was open on Sundays? I didn’t know that, but is it the Riverside Medical Clinic? Is it there? I don’t want to go to a new place.”

“Yes, it’s the same place mom. You’ve been to Urgent Care lots of time; you’ll remember once you’re there.”

We led her to the car and drove her to Urgent Care. Dad even took her “favorite” route to make her happy.

We pulled into the Urgent Care side of the clinic and mom got out of the car, looked at the sign and said,

“Oh, Urgent Care. Yeah, I know Urgent Care. I didn’t hear you say that it was Urgent Care.”

Really??

When we walked into the waiting room, there was only one elderly couple (probably late 70’s) sitting in the room. Dad checked mom in at the front desk as mom plopped down in a chair across from the couple. She turned her body towards them and immediately started chatting incessantly to the elderly woman.

“I’m feeling so severe, my stomach too and I’ve been throwing up, I hope the doctors can help me.” Mom began rambling on for several minutes as the woman stared blankly at mom. “It’s just so weird how us women change when we get to be in our 50’s, are you in your 50’s too?”

“No,” the woman replied flatly.

“Oh, no? Are you younger than me then?”

“Older,” she stated. The woman was saved then, as the nurse called her back to a room.

A few minutes later mom was called by the nurse to read her vitals. The nurse asked her to step on the scale; mom refused.

“No I just went on my scale at home a few days ago too and it said 133 pounds, which is so good too.”

After finally convincing mom that she had to step on the scale, she protested when it read 126 pounds.

“No, I don’t weigh like that, I weigh 133 pounds. No.”

After her vitals were read, they asked for a urine sample. Dad gave me the honor of helping her with that. I’ll spare you the details. Suffice it to say, she was very confused at why she had to do this and insisted she went pee at home and didn’t need to do it. We were (barely) able to get what we needed.

Shortly after settling into her room, the doctor came in and asked a few questions. Mom went a-mile-a-minute telling him not only about her stomach problems, but about every other problem as well. He was very patient and listened to mom as she went on. We, of course, explained her situation (and her dementia) and he told us that her urine sample came back showing that she was “severely” dehydrated (his words, not moms!!) He explained that she was spilling out ketones; in normal urine, it should test negative for ketones. Mom’s tested at the highest level possible. When urine spills ketones, it means dehydration and a lack of proper fats and nutrients to the body. She also had a slight urinary tract infection. He told us that he’d start an IV to hydrate her as well as give a round of antibiotics to treat the UTI. He tried explaining this to mom as well. Of course she had no idea what an IV was and was expecting a magic pill to cure her ills.

As the nurse came in to set up mom’s IV, I became a bit nervous. My teeth chatter when I get really nervous and try as I might, I couldn’t stop the chattering. I felt like I was back in there with my small child, anticipating the surprise and pain they would feel at the poke of the needle. I wasn’t sure how she would react and I was praying she wouldn’t throw a big fit. A 2 year old is easy enough to hold down…a 52 year old…not so much.

We explained as we went along, trying to capture mom’s attention. She rambled on and on about the trip she wants to take to Utah because “it’s so good there” and she has family members she’d like to see. A good distraction I suppose, but I didn’t want her to be caught off guard and freak out. I followed her eyes, made contact, and said,

“Mom, she’s going to put a needle in your arm, like a shot. It’s going to hurt just a little bit, okay? Just hold still.”

The nurse did the same (explaining) but I’m not sure that mom really understood. When the needle went in, mom flinched.

“Owe! That hurt! Why did you do that? Why are you doing that to me? Owe! Don’t do that, owe, that hurts!”

Unfortunately, the first attempt to start the IV didn’t work, and she had to try again on another vein, with the same protests. As soon as the pain subsided, however, mom went right back into her conversation about Utah without skipping a beat. Despite her protests, mom did really well and held still while the nurse did what she needed to do. Thank goodness!!

Then came the hard part. Waiting. And waiting. Mom kept asking when we could leave, complaining that she was uncomfortable and cold. She ended up with 5 blankets and her fleece jacket on top of her, but she was still cold. We tried to make her comfortable and pointed to the fluid bag, explaining that all of that “medicine” had to drip down through her IV and into her body before we could leave. I lost track of how many times we explained that to her.

“Where’s the doctor? Why do they keep leaving? I wanna go home now! I need to go home. They need to let me go home.”

When the nurses would come in to check on the bags, mom would start on them,

“Can you take this off now please, I wanna go home? I don’t know why I still have to be here.”

As the fluid was finishing up, the doctor made his way back in to check on mom.

“Oh, can you please let me go now? And take this thing off so we can leave? I’m ready to go home. And I’m so cold too.”

“I can get you another blanket,” the doctor said, exiting the room briefly to round up another blanket.

Mom became agitated. “Where did he go now? Why does he keep leaving??”

She kicked her foot off the edge of her bed and kicked at the curtain in an attempt to look out the door for the doctor. Just then, he stepped back in and mom let out a sheepish grin.

“Oh, there you are. Please take this off and let me go home now.”

“Okay, we’re almost done and you can go home.”

They could see she was getting restless, so as the last drops of the fluid made their way down into her IV, they began their check out process in an effort to pacify mom. They checked her vitals, printed out the at-home care instructions and input some notes in their computer…as slowly as they could. Mom was overjoyed when it came time to take out the needle (though she was not very amused that they wrapped her arm again where the puncture was…the dressing over the IV had been irritating her all night!)

Nearly 3 hours later after our adventure had begun, mom was back at home. I’ll be heading over there shortly, and hopefully she is up and doing much better today. This brings the future to question…how many more times will we end up in Urgent Care or the ER, hooked up to an IV? Will this become a weekly or bi-monthly procedure? No amount of explanation can convince mom that she needs to eat or drink. Once she starts feeling the slightest bit nauseous, which can be for a number of reasons, she quits eating and drinking and the viscous cycle begins. I plan on buying some ketostix over the counter at the pharmacy, which will help in monitoring the dehydration. We need to look into more medical options and see about a home nurse coming in weekly to check on her. I’m not sure how to begin that process, but it’s on the to-do list. I suppose this is just one of the many issues we are going to have to deal with from here on out in this ugly journey of dementia.