Mystery Solved

I’m writing this fast, as I’m short on time, but I wanted to give an update on my mom. This is an extremely condensed version. Please forgive me that my writing is not at it’s best ;)

Last Thursday, I left with my hubby and kids to meet up with my twin brother (and his family) at Lake Mead for a long weekend of fun. I felt nervous about leaving mom because she still wasn’t eating. By Thursday night, she was throwing everything up again. I talked to my dad Friday morning and he said he was taking her into Urgent Care, again.

After spending all day in Urgent Care and undergoing some tests, they found that a number with her liver was way too high (sorry, I don’t know all of the medical terminology-I wasn’t there). They then did an ultrasound and found a blockage in her bile duct which meant she had a gallstone. This blockage is the reason why she cannot hold anything down and why she has been throwing everything up. They admitted her to the hospital (Friday night) and said they’d do more tests on Saturday to get a more clear picture and determine their next step, which would be either removing the gallstone or removing the gall bladder (this is what they told my dad).

Saturday came and they took her out in the afternoon to do a few tests. Upon returning her to her room, they gave my dad no further information. When he finally asked, they told him that the attending doctor would be by that evening to speak with him. Dad waited until 9:30 pm and no doctor ever came by. He also ordered mom some soup from the cafeteria around 7:00 pm and it never arrived. Dad went home feeling frustrated and not really sure what was going on.

When he arrived back at the hospital early Sunday morning, he was told the doctor had already made her rounds. He asked if the doctor would call him and he was told she would. He also gave mom an Ensure, as she had been asking for something and nothing had ever arrived from the cafeteria. The nurses gave my dad no instructions on what she could or could not eat (the communication with this hospital has been lacking, to say the least), so he figured he’d make her happy and give her the drink and if the nurses had a problem with that then maybe it would be a lesson of communication for them. My dad waited…and waited…and waited for the doctor to call. My mother-in-law, who is the President of Volunteer Board at the hospital, got wind (from me) about what was going on and she put in a heated phone call to the charge nurse. The nurse told her that the doctor was on the phone with my dad “as we speak”, which turned out to be a lie. However, the doctor finally did call a couple hours later for the first time throughout mom’s stay-after the doctor who would be removing the gall stone came in and explained the whole procedure to my dad. She (the attending doctor) was a day late and a dollar short.

They sent mom in for an MRI Sunday afternoon and the doctor who was removing the gall stone told dad that the procedure would take place likely sometime on Monday and that it was up to the surgeon to decide, after looking at the MRI, if she would need her gall bladder removed.

Yesterday, as we were driving home from the lake, mom went in to have the gall stone removed. They never gave a time or anything for when it would be done; it was just a spur-of-the-moment “okay we’re going to take her in now.” My sister (who was with mom) called my dad, who was finishing up on a job, to come and he rushed over, only to wait a couple more hours for them to finally take her in.

By the time I arrived at the hospital (around 4 pm) she was back in her room and confused at whether or not they had taken her out to do surgery. Try as we might to explain it to her, mom could not understand what had gone on. Furthermore, they hadn’t said a word to dad when they dropped her off about what was going on. We finally called a nurse in, who was under the impression that mom would be going home now that the stone was removed. My dad told her that the operating doctor had said the surgeon was supposed to look at the MRI (taken the day before) to determine if the gall bladder needed to come out. The nurse went to make a phone call for clarification to both the doctor and the surgeon and confirmed that the surgeon would “definitely” be by that evening to check on mom and make a decision on her gall bladder. She also put a call in to the attending doctor so she could fill dad in on the details (I think there was a little confusion about that…we were hoping to speak to the surgeon himself to know if he would, in fact, be coming to the hospital). The attending doctor eventually called dad and made it very clear to him that she did not have time to come by and check on mom. I don’t know what the point of her phone call was; she gave no useful information and she has been absolutely useless throughout mom’s stay (not to mention she has had a very witchy attitude with dad). They are paying her for nothing.

We waited…and waited…and waited for the surgeon to come by and let us know what the heck was going on. If mom did not need the surgery, she would be free to go home. Mom was getting very restless and couldn’t understand why they were making her stay. 

“I don’t think these people here are being very supportive of me and helping me. I want to go home please…your sister was here earlier and wasn’t being so supportive of taking me home so please your dad and you can take me home now, please, I want to go.”

Over and over mom asked what time we were leaving and demanding that we take her home. My sister had also reported to me (earlier that morning) that mom had already taken her IV out 3 times over the past 2 days; the poor dear is tired and restless and wants to be home in her comfort zone.

The nurse put in a call to the surgeon that we were waiting to talk to him and again reassured us that he would be by. By 9:00 pm the surgeon still hadn’t come and I headed home. I felt bad for leaving when she was so hopeful that I would be the one to save her and rescue her from the hospital.

I called my dad this morning and he related to me that the surgeon finally called him THIS MORNING to affirm that he would indeed be removing her gall bladder. He claims that he had no knowledge that our family was waiting to speak to him and also claimed to have an emergency today; therefore, he cannot perform the operation today but rather, mom has to stay ANOTHER night and wait until tomorrow to have her gall bladder removed.

My Aunt is with my mom now and has been texting me that she is very upset this morning. I will be heading over shortly and maybe I can distract her. Although I am not hopeful.

It was a bit nerve racking being away while all of this was going on. Not that I could have done anything to help her…but just being away while she was going through all of this was hard. I had fun with my family, but mom was constantly on my mind and I was constantly nagging my dad and sister for updates. My sister and my dad did a great job taking care of her, making sure someone was always with her, and my sister has done an excellent job keeping my family and me informed of everything going on. I know she was in good hands. But I can’t help feeling guilty being away. We have another weekend trip planned for the holiday to visit my twin in Arizona and pick up a couple of my kids (who went home with him). And again, I question myself for leaving. I know there are others who can step in; I am not, by any means, irreplaceable. But I just feel guilty being away when she’s going through this. Thank goodness for family and for friends and for the good people at church who fill in and help take care of my mom.

Hopefully, once her gall bladder is out, and she begins her healing process, this will resolve most of her stomach issues and we can get her eating again!!!

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.

Mom’s Stomach Issues

Mom has been having stomach issues for quite some time now. She will go days, and even weeks, with little problem and then suddenly a stomach “attack” comes on. Lately, these episodes are becoming closer together.

An episode usually starts in the evening or in the middle of the night. Usually. Mom starts to feel “severe” and in no time she is hovering over her small wastebasket at her bedside, gagging and throwing up phlegm and liquid. By the next day, she refuses to eat because she is afraid that if she does, it will upset her stomach and she will throw up again. So it continues for a few days: mom, throwing up while taking her usual medicines and refusing to eat.

I believe it’s a cycle. Mom’s stomach is upset. Mom throws up. Mom refuses to eat which makes her stomach even more upset causing her to become nauseous and eventually throw up again.

The part that is unclear is why she is getting sick in the first place. We’ve brainstormed many ideas: maybe she’s developed a lactose intolerance (we switched her milk to almond milk, unbeknownst to her) or maybe she’s eating spoiled food (this could still be a possibility, but we try our hardest to keep up on cleaning out the fridge). We have taken her to a specialist (the “stomach doctor”) who has done ultrasounds and CT scans. Nothing shows up. Yesterday, dad had another appointment with this doctor to follow up with past issues and again, he said that there was nothing obvious that was showing up that could be a source for her sickness. He recommended that they put mom under anesthesia and do some sort of exploratory procedure to see if anything else can be seen. Dad told him that he would consider it, but hasn’t made a decision on whether or not to put mom through this.

There are pros and cons to the procedure. The pro would be that we could possibly find a cause for her stomach issues. The cons are many: how will mom do under anesthesia? Could it cause further complications with mom’s condition or could it “push along” the disease process? If they do find something-say, maybe cancer-what good would that knowledge do [I know this sounds horrible, but if indeed they did find cancer would it be worth putting mom through chemo in her condition and with the quality of life that she has to look forward to?] These are all things to consider.

The biggest question remains: if we put her through this test, are they actually going to find something or is a lot of this in mom’s head? With semantic dementia, hypochondria is a big problem. This was explained to me at our last visit with UCLA, that with this form of dementia, their mind is losing memory/recognition of what certain bodily functions mean. For example, mom’s stomach may growl or hurt because she is hungry, yet she doesn’t understand that what she is feeling is related to hunger; she becomes confused with what she is feeling. Because of this lack of recognition, they become preoccupied with and fixated on every sensation they feel. Could it be that mom is simply hungry but cannot recognize the hunger pain? Rather than eating and putting an end to the hunger pains, mom starves herself for days, only occasionally drinking Slim Fast, Ensure or water, all the while continuing to take her medications. It becomes a cycle: not eating, feeling sick, not eating because she feels sick, feeling more sick because she’s not eating.

Within the past 2-3 months, mom’s eating habits have significantly worsened. She hardly eats (which could explain her increase in stomach problems). She’s losing more weight. She drinks Slim Fast for breakfast, Ensure most nights for dinner and eats only a sandwich at lunch time. Sometimes she will snack on fruit or Poppycock in the afternoon. I know that when I do not get enough to eat, I sure don’t feel good! Despite our efforts in getting her eat, she keeps herself on a mostly liquid diet. She doesn’t recognize most foods anymore (the other day she didn’t even know what chicken tacos were…and that was one of her ‘staple’ foods only a few months ago!) and when we try to convince her to eat something we’ve made, she protests,

“No, different things now upset my stomach, no. I don’t know how that will make my stomach feel.”

I have tried telling her over and over and OVER that her stomach upset is likely due to her medication with her liquid diet. She will hear nothing about it. No amount of coaxing or explaining will convince her. We have tried everything we can think of. We are at a loss of what to do. :(