UCLA 6 Month Check Up

Since mom’s diagnosis (in March of 2012), she has been going in for check ups every 6 months or so. This past Monday was another 6 month check up.

The first few visits were fairly beneficial. We were educated a lot on the disease. Last visit (in January), the Dr. was able to recommend medications to help mom with the rigidity and OCD behaviors that come with this disease. But the more and more we go, the more fight mom gives and the less we feel we are getting out of the visits.

It’s not that UCLA isn’t doing their job well. It’s just that there is no treatment for the disease. She is pretty much off the scale that they use for semantic dementia. She can’t identify much of anything from picture anymore. The one category she can still somewhat identify is the pictures of animals. She cannot name the animal correctly (she either doesn’t recognize it as anything or she classifies every animal as a dog) but she still categorizes most pictures as “animals”. Other pictures shown to her (house, comb, toothbrush, pictures of famous people, etc) elicit a blank stare and no response.

The Dr. reviews with us the symptoms of semantic dementia and reaffirms how mom’s behaviors are consistent with the disease. At this point, we are all too familiar with the symptoms. We’ve done our research and taken good notes. We know what is to come in the future. Not to sound like “know-it-alls”, but there isn’t much that they can tell us that we haven’t already heard. They can’t give any estimate of how long until mom reaches the next phase. Every case is individual. Semantic dementia is known to be one of the longer-running dementias; he said it could last as long as a couple of decades. With mom’s rate of progression, I’m not sure that it will last that long for her. In fact, I pray it doesn’t. I don’t say that in a cold-hearted way; rather, I mean it quite the opposite.

Mom’s quality of life is gone. The only thing she has to look forward to each day is her computer games. She has no interest any longer in her grandkids or even visiting with her family for Sunday dinner (or any dinner). Taking care of her is quite stressful. It is heartbreaking to see her decline more and more and it is heart wrenching as we sit helplessly by and watch the person we once loved so dearly slip further and further away. Dementia is a cruel disease.

For my own tracking purposes, I would like to note some characteristics of where she’s at in this disease, as of July 2013 (to compare with 6 months ago):

• Weight: Mom weighed in at 134 lbs. on UCLA’s scale. This is 6 pounds less than 6 months ago, but about 8 pounds more than a month ago when she was having her eating/gall bladder issues.
• Eating: Mom is down to maybe 5 things that she will eat. She starts the day off with Slim Fast (unbeknownst to her, we have substituted this with Instant Breakfast); she eats a turkey and cheese sandwich everyday for lunch; she will snack on Poppycock, fritos, strawberries or pineapple for her afternoon snack; for dinner she may drink an Ensure or she might make herself some tortellini and mixed vegetables. Rarely will she eat anything else, but she will still eat hamburgers and burritos as well.
• Daily Activities: Mom occasionally, very occasionally, do a load of laundry here or there. It usually only includes her own laundry (not dad’s) and maybe some towels. I never see her do dishes anymore. She sits in front of the computer before lunch and after nap to play Spider Solitaire. Sometimes she will go on walks but only if she has a purpose: a trip to the bank, grocery store or a visit to her sister. She rarely wants to come to family dinners or family functions and only does come when she is forced.
• Personal Hygiene: She is still able to groom herself. She showers almost everyday. She puts on her make-up and styles her hair everyday (though it may not look as nice as it once did). She still dyes her hair every 6 weeks on the dot and she brushes her teeth frequently. I have noticed that she is not as diligent about washing her hands when necessary. For example, in the hospital she washed herself with a paper towel in some private areas and wasn’t going to wash her hands afterwards (ewe!).
• Conversation: It is becoming increasingly difficult to hold a conversation with mom. She doesn’t comprehend most of what we say. She seems to pick out only key words in conversations that she understands but cannot comprehend the whole of what we are trying to say. Many times, she gives us blank stares when we talk to her and we receive no response. She will talk a mile a minute about what she wants to talk about, but she seems to hear nothing we say in response. Her speech is somewhat slurred together and mumbled, particularly when she can’t seem to find the right words to communicate.
• Behavior: She has become a little bit more confrontational. I first noticed this in the hospital and noticed it again the other night, when she was insistent on loading her food in their trailer refrigerator (packing for a trip); she broke one of the shelves on the fridge and when my dad tried to fix it, she kept getting in his way and insisting he put her food in the fridge “now”, despite his attempts to redirect him. At one point, he was physically trying to move her back and she raised her fist at him. So far she hasn’t struck anybody…let’s hope it stays that way.
• Sleep: She wakes up around 8:00 or 8:30. Sometimes she will sleep in late, until after 9:00, if she’s had a rough night or a rough day before. She still naps at 1:00 on the dot until 2:30. She goes to her room by 8:00 to take her medicine and tuck herself into bed. Dad says she gets up at 10:00 pm every night to go to the bathroom and then goes back to bed. Sometimes she’ll wake up in the middle of the night and trying talking to my dad.

Birthday Presents From The Heart

My daughter is going through a phase of wanting to give gifts. At 8 years old, she doesn’t have money or transportation to go and buy gifts for people, however. When she’s feeling particularly loving towards someone, she will scavenge in her room until she finds just the right thing to give as her gift. Among some of the gifts I’ve received recently are: my grandmother’s stuffed animal (which I gave to her when grandma died), plastic necklaces, a homemade necklace of random beads, pictures from coloring book pages, a child’s headband, her medal from school…just to name a few.

Each time she gives me her gift, it’s wrapped up, haphazardly, in whatever paper she’s been able to scrounge up. Sometimes she will find a gift bag and stick her treasure inside. She always has a huge smile on her face and watches in anticipation as I open up her heartfelt gift. Of course I play along and give a show of excitement and thank her for her thoughtfulness.

Since my mom has been stricken with dementia, she has become a child in nearly every way. Gift giving is no exception. Last night, we gathered together for a family dinner to celebrate my sister’s birthday. For a few weeks leading up to Christina’s special day, mom kept telling her that she wanted to take her to that “bath place” (Bath & Body Works) to buy her some good body stuff. With all the chaos that has ensued over the past few weeks, mom never made it out with anyone to go shopping.

Last night, as we gathered for Christina’s birthday, mom came rushing into the kitchen and put something in Christina’s hands: one plastic-sealed bottle of Country Apple Scented body gel and one half-empty bottle of Country Apple Scented body lotion.

“Since I couldn’t take you to that bath place here, happy birthday,” she said with a big grin.

There was no card; no pretty bows or wrapping paper. Just a recycled gift that came from mom’s heart. Christina smiled (and chuckled) as she accepted her sweet gift and thanked mom.

Soon after, Christina received a work call on her cell phone. As she walked down the hall to take the call privately, mom followed behind her, singing into her ear “Happy Birthday to You.”

I’m growing to appreciate these small, heartfelt moments from my mom. I see her as I see my children, eager to please and with such an innocence about her. For me, the gifts I’ve always appreciated the most are the gifts that come from the heart. Mom has surely mastered the art! :)

“I’m Going Home”

Some days are good and others are bad. Yesterday was bad. Really bad.

After spending four uncomfortable, frustrating days in the hospital, mom was more than ready to go home. Her surgery had been set for today, but she was ready to go. She remembered back to her heart surgery, when she came into the hospital the morning of the surgery and she thought this should be the same way.

My dad already had to convince her to stay Monday night. So we knew she would be a little antsy by the following morning. Dad had a job to finish up so we lined up family to be there with mom all morning and afternoon until he could return. My Aunt was scheduled to stay with her until noon and I was to arrive shortly thereafter once I had finished up some errands. I received a phone call from my Aunt at 11:30 to let me know that she had had enough and was leaving.

“I’m not feeling good and I’m not in the mood for this,” she reported.

Apparently, mom was insisting that she was going home and when this Aunt told her she wasn’t going to take her, mom told her she could just leave. So she did.

I was in the middle of dropping my step-daughter off at the airport when I received the call, so it wasn’t a situation where I could get over there quickly. I called my mother-in-law, who was volunteering at the hospital that day, and she went over to check on mom and to ask a nurse to sit with her until I arrived.

I got to the hospital about an hour later and found mom peacefully resting in her bed, eyes closed. As soon as she heard me, her eyes popped wide open and she sat up, pulling her covers down and revealing her normal clothes on her body.

“Oh good, they said I could go home now too and I can just come back in the morning before the surgery too and I can go home tonight and rest which is so good too because I need to have a shower and do my hair and my make up and other things too…”

I looked over at the nurse aid who sat silently by while shaking her head “no”.

I told mom that I didn’t think she could go home and she protested,

“Yes, they told me I could.”

I called in her nurse who affirmed to me that she was not able to go home. Mom became irate.

“I can too go home, they told me I could!”

We went back and forth for several minutes as I tried to ask her who told her she could go (which she couldn’t tell me) and explain to her that she wasn’t able to go home. Of course she understood nothing I said and became very angry with me for “not supporting” her and taking her home. She began yelling at me, and the nurse, and I shut the door to prevent everyone in the wing from hearing her.

“I want to go home, you can’t keep me here!…If you won’t take me then I’ll go down and pay someone to take me!…you can’t tell me what to do!…if nobody is gonna support me then I’ll just kill myself!…I wanna go home dammit!!…”

I felt totally lost on how to handle this. I fought back the tears and all I could think of was to tell her,

“Let’s just wait here for dad, okay? You can’t leave without dad anyway, so let’s just wait. Will you please sit on the bed?”

After much coaxing, mom sat down on the bed. The nurse told me he had ordered a psych evaluation. I told him to cancel the test. That comment set me over the edge…my mom didn’t need a psych evaluation, she needed her surgery and to get the heck out of that place! I was angry at the mere suggestion and was afraid they wanted to lock my mom away, figuring they must have ordered the test because of her “kill myself” comment.

Mom sat down on the bed, her overnight bag on top of her lap, and waited for dad to pick her up and take her home. I breathed a sigh of relief that for the moment; she had settled down. I texted my dad to let him know the situation and as soon as I glanced back up, I noticed that mom had silently pulled out her IV.

“Mom, you can’t take that out,” I said, but I was too late.

“Yes I have to take this out. I’m going home. Your dad is going to take me home and I hope he’ll take me to a really good dinner too.”

And so my very long afternoon continued. Every once in a while, mom would stand up and start insisting I take her home. I tried and tried to convince her to sit down and wait for dad but as the day wore on, the waiting became more difficult.

They moved her to another room, which was closer to the nurses station and in a quieter location (and much farther away from her room that sat right next to the elevator). It was a chore to get her to move. I had to convince her that it was much quieter down there (she continually complains about how noisy it is there) and I told her that they were bringing someone else in the room; it would be much better to go wait in a room by herself without a roommate. It worked and she finally followed to the next room.

As the hours wore on, mom became more and more restless. When she realized she couldn’t convince me to take her home, she tried manipulation.

“They told me I could exercise so I need to go for a walk too.”

“If you’re going for a walk, you need to leave your overnight bag here,” I replied, knowing full well of her intentions to escape downstairs.

By 3:00, I had to physically get up and stand at the door to prevent her from leaving. By this point, a social worker had arrived and I vented all of my frustrations of the hospital and our situation with her. She was very compassionate and helped me in whatever way was possible, but of course the surgery was completely dependent on the doctor and his schedule. The social worker stood at the door with me as mom tried to move me aside and shouted,

“I’m the mom, you’re the daughter, you can’t tell me what to do!!”

It took every ounce of self control to hold back my tears and not have a break down right there in her hospital room. I asked the social worker if there was some medication to calm her down.

“That’s what the psych evaluation is for,” she answered.

Why the heck didn’t the nurse tell me that?? Here I was thinking they wanted to evaluate her and lock her away when the test was simply for evaluating if she needed something to calm her down. She apologized for the miscommunication (or lack of) and reassured me that the test was in no way designed to send her away to a mental hospital; we decided to ask for the doctor to come evaluate her.

My other Aunt (mom’s other sister) showed up and tried to help me calm mom down. I was so thankful to have some extra help; it was very difficult to manage on my own. By late afternoon I had both the social worker and my Aunt to help keep me sane.

My dad finally arrived to the hospital around 5:00 and I was never so thankful to see him!! I knew (and warned him) that all hell would break loose once again as soon as he got there. And it did. Mom was angry that dad wouldn’t take her home.

“No, I can go, they told me I could go! I need to go home and shower and use my really good soap stuff and wash my hair real good and do my hair too and my make-up and other things too. And I need my clean clothes too, these are too dirty.”

“Dear, look. I brought all your good stuff, see?”

Dad took out her favorite body washes and laid out each piece of make-up and article of clothing to show that he hadn’t missed a thing. She refused. She held on tight to her bag (it had been on her lap or on her shoulder the entire time I was there). The tantrum went on. She paced the room, she tried to push through my dad, she tried manipulating and bribing my dad to take her home, she yelled, she cursed, she flipped my dad off several times. Through it all, my dad remained calm, patient and even tried to make light of the situation and tried to joke around with her a bit. He reassured her that he would stay with her the entire night. He did a great job and after another hour or so of her tantrums, she finally sat on the bed. I think dad might have finally found his leverage with her-he started talking about the trip she wants to take to Utah this summer and he told her that she had to get better and have the surgery if she wanted to go (of course it took a lot of repeating and explaining over and over before she caught on…he was talking about all the people they would visit and the places they would go). At this point, her sedative finally arrived (nearly 2 hours after I asked for it). They gave her a shot in her shoulder; she whined about them hurting her and then sat silent for several minutes.

And then, out nowhere, she sat up and began fumbling through her things.

“What are you looking for dear?” dad asked.

She ignored him. She ignored my Aunt. She ignored me. She collected her clean clothes and her body wash and marched over the bathroom.

“There’s no shower in there,” I reminded her, as she silently closed the door and locked it behind her.

We listened to her behind the closed door as she scrubbed herself with wet paper towels for the next 5 minutes. Then, she came out in her pajamas and plopped down on her hospital bed. She put her legs up and got out her favorite smelling bubble bath…and began applying it as lotion.

“Mom-that’s not lotion. See here? It says bubble bath,” I told her.

She ignored me and continued rubbing in her bubble bath. I chuckled and let her go about her business. What could it hurt? When she was finished, she looked up and said,

“Do you think I should put on my make-up now or in the morning?”

For the first time in the 7 hours I had been there, I was able to sit back and relax. It appeared that mom had accepted her fate of staying in the hospital for one more night.

I’m wondering how it’s going to blow over after her surgery today if they tell her she has to stay just one more night.

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!!!

A Drastic Change

I wasn’t ready for this stage quite yet.

I’ve tried to prepare myself for our future with dementia by educating myself on the disease. I have read books. I have gone to support groups. I network with others online. I think, for most part, I know what to expect. Yet I did not expect to have this issue at this phase in the game. I thought this part wouldn’t come until the end. That’s usually when a person refuses to eat. Or, at least, that’s what I thought.

I know that mom could pass through many phases in this diseases. I’ve read about others who regress back to toddlerhood and infancy, putting non-food objects in their mouth, getting into things they shouldn’t be touching. I know many caregivers have to “childproof” their living spaces to keep their loved one safe. Most, if not all, lose the ability to toilet themselves, shower themselves or take care of any hygiene for that matter. Towards the end phases, many have trouble walking, talking (some lose language completely), and many develop problems swallowing and lose the ability to eat.

Mom hasn’t passed through any of these phases yet. She still takes care of her own hygiene. She toilets and showers herself. She puts on a face of make-up and attempts to curl her hair everyday (though not quite like she used to). Aside from hiding car keys, medicines and credit cards, we haven’t had to childproof anything from mom. I thought she would have to pass through all of these phases before she struggled with the eating phase. I expected it. I guess it’s true what they say. No two cases of dementia are exactly alike.

Over the past couple of months, mom has altered her diet once again. One thing always remains the same, and that is her morning Slim Fast. [Although one minor modification to that is that sometimes she will skip it in the morning now and drink it for lunch instead]. A typical day consists of: Slim Fast in the morning, a sandwich for lunch (with turkey, tomato, sliced American cheese, mayo and lots of sandwich oil), occasionally fruit (strawberries or canned pineapple) or Poppycock for an afternoon snack, and an Ensure for dinner. If we are lucky, she might go out to dinner with us but that has almost become non-existent as well. We can’t even get her to go out to her favorite restaurant (Miguel’s) anymore!

In the past week, the only solid food mom has eaten is some strawberries (twice) and 1 1/2 or 2 sandwiches; this is total for the entire week. She might have tried to eat a handful of Poppycock popcorn once or twice. Half of that food was thrown up. She drinks her Slim Fast everyday, once a day, and drinks a small can of Ensure most nights for dinner. Half of that has been thrown up as well. She only drinks water (about 6-8 oz) when she takes her medication, 3 times a day (as far as I’ve noticed). Try as we might, we cannot get her to eat anything. We’ve tried soups, Gatorade, popsicles, lemon-ginger tea, breads, toast...we’ve even offered to take her shopping to pick out what she thought would sit well in her stomach. It’s no use. Mom has it in her head that if she eats, she will throw up. And when mom has something in her head, you cannot convince her otherwise.

My dad took her to a follow-up appointment with the doctor yesterday…if that did any good. All they did was order more lab work and give her more medicine: one medication to prevent her from throwing up, and one medication to help increase her appetite.

My dad is willing to do anything at this point to get her to eat, including to try this medication. I suppose it is worth a shot, but I’m a bit more hesitant-with good reason. With mom’s disease, the body loses it’s ability to make sense of bodily functions and signals. For example, mom cannot understand why her eyes water all the time; she thinks she’s “so weird” when she burps or yawns or if her stomach makes noises. She doesn’t understand these things anymore or what these functions represent. Along with this, they (those with semantic dementia) lose the sense of knowing when they are hungry or full. I firmly believe that mom’s ability to decode hunger is lost. I think a part of her stomach pains could actually be attributed to hunger pain. But she doesn’t recognize it as such. Instead of eating and ending the hunger pains, she skips meals because she’s afraid of upsetting her stomach.

If my hypothesis is correct, wouldn’t it be logical, then, to say that this medication will only worsen her stomach problems?

Mom now weighs in at 126 pounds. That means she has lost another 14 pounds in the past 5 months and I would say most of that has been in the past 2 months. If this drastic change in her eating continues, at what point will the doctors do more than just prescribe a pill? I’m not sure what this means for the future. Is it just a phase? Will she eventually start to eat again? Or has she taken a drastic turn?

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. :(