Monday, May 18, 2015

Happy Birthday Mommy

I'm a week late in posting this, but last Monday (the 11th) was mom's birthday. I wanted to blog about it, but I've been pretty busy and to be honest, I didn't have anything too positive to say. It was a bit of a disappointment, to say the least. We all knew that mom would probably not remember her birthday; afterall, the last birthday she remembered was last summer and she didn't understand Mother's Day (or any other holiday). So you'd think we would be prepared for the disappointment. Nevertheless, we thought-whether she understood her birthday or not-we would take her out to the mall and let her shop to her heart's delight at Bath & Body Works (followed by dinner at her favorite place, Miguel's). Mom has been extremely antsy to get out of the house lately, so we figured she'd jump on the chance to go out to the mall.

We prepped her days in advance of our shopping plans with seemingly no comprehension on her part. Then, on Sunday, she surprised us all by saying that dad was taking her to the mall "tomorrow". We felt optimistic that she has grasped something we had said. But the optimism was short lived. I arrived at her house at 4:00 on her birthday to help my dad get her ready to go to the mall. To make a long and tiring story short, mom couldn't understand what we were trying to get her to do. I brought the kids in to sing Happy Birthday to her, but they may as well have sang it to the wall for the response they got from their grandma. I thought the tune might-just maybe-spark a memory in her. We showed her her bottles of body lotion, stating that we wanted to take her to get more. Nothing. Mom sat on her bed and fixated her attention to the clock, waiting for it to turn to 4:30 which would allow her to go and eat her pb&j sandwich for dinner. We tried for more than half an hour to get her out the door until we finally resigned our efforts. I could tell that my dad felt let down and our moods all shifted from hope and optimism to sadness and defeat.


If there is anything positive that we can say about mom's birthday, it is that we had a show of love and support from our friends and family. We had set up a fundraiser for The DEANA Foundation, honoring it's namesake's birthday, at-where else?-Miguel's Jr. Throughout the day, I received texts, pictures and posts from friends who were dining at Miguel's and wishing my mom a happy birthday. I can't tell you how much that means. Though my mom's memory fades, the memory of the person she once was will forever live on.

(The top picture was taken when I was delivering my first baby in 2005. The second picture was taken on Mother's Day; it's a blurry shot but that's all we can get these days).

Thursday, May 7, 2015

Losing Track Of Time

About a month ago, I wrote a post about another turn that mom had made in this disease. The problem was that mom had been waking up at night completely disoriented, thinking it was day time. Consequently, during the day she slept, thinking it was night. It was after some detective work in my online support groups and a home UTI test that showed up positive that we concluded mom's disruptive routine was the result of a UTI. I wrote my follow up post, stating that the doctor had ordered a UTI test at the lab and in the meantime had prescribed mom some antibiotics because it did sound as if she had a UTI. She started the antibiotics and soon after had gotten back into her regular routine. We were confused, however, when the lab results came back a few days later, negative for a UTI. The doctor figured she must've had some other sort of infection that the antibiotics cleared up, thus getting her back into her routine.

So here we are, a month later, finding ourselves in the same situation, yet again. For the past week mom has been very disoriented with time. She's been up showering at midnight, making peanut butter and jelly sandwiches at 4:00 in the morning and playing on her computer at random times of the day and night. She's been keeping my poor dad up at night. The interesting part is that she doesn't think it's night time during the day. She might think it's dinner time when it's breakfast, but I haven't noticed her (or heard about from my dad or other caregivers) getting in her jammies and sleeping during the day. It's almost as if this past week has been one very long, continuous day for her. Except that she will, on occasion, rinse her hair or put on make-up and do bits and pieces of her routine (only at random times of the day/night). I can't make sense of it because her entire routine is thrown off. It's hard to think that it could be another infection (though it's possible), but more likely just the turn we have been fearing-that mom has lost her sense of time.

Tuesday, May 5, 2015

Senior Citizens

Last week was my dad's birthday. My sister-in-law, Natalie, and I have been joking since last year that we were going to throw him a "Senior Citizen" party, since he was turning 55 and now eligible for the senior discounts. The funniest part about it is that my dad doesn't look (or act) like he's 55 in the least. We thought this was a pretty fun birthday party idea and dad could use a good laugh now and then. We moved forward with our party plans and last weekend, we threw dad his Senior Citizen Birthday Bash. Joe and Natalie drove in from Arizona and we invited our family and close friends to celebrate. The fun people dressed up like senior citizens and we ate good food, laughed, opened presents and played Bingo. It was a really fun night. Here are some fun pictures, just to bring a smile to your face. I laugh every time I look back at the photo of Natalie and me.


With every up there is a down. We had a fun time getting together and celebrating and it was good for dad to get out (we had a caregiver at home with mom). Joe doesn't say much, but I know this visit was especially hard for him because it was the first time that mom didn't know him. Even a few short months ago, at Christmas time, mom connected who her son was-even if she wasn't very social. This time, she couldn't figure out who he was and kept telling him that he needed to leave. Joe told me that on day 3, she finally figured out who he was, but continued to tell him that he needed to go home and shouldn't stay. Other than the usual things mom talks about (her lack of money and credit cards, not being able to drive, etc), Joe wasn't able to understand anything she said. Her speech is very fast and very slurred. If we can pick out a few clear words we are able to piece together what she is talking about. For those who don't see her as frequently (like Joe), it's harder to make sense of what she is talking about.

The next time Joe will be out will likely be in July. Seeing how it took mom 3 days to know who he was, I wonder if she will even connect the dots at all during their next visit :(

Monday, April 6, 2015

The Lost Jacket

We've been experiencing some warm weather here...and it's barely just spring! It's been in the 80's and 90's and mom still insists on wearing her thick, fleece jacket for every second of every day. It's gotten to the point where she has even been sleeping in it. She cannot make the connection between her severe sweating and her jacket. Needless to say, it is a concern for us when she goes on her walks in this heat. She ends up extremely hot and sweaty and refuses to drink water; we are afraid she will overheat herself and pass out. Try as we might, we cannot peel that jacket off of her!

My dad decided that the jacket needs to disappear. He was able to take it away one day, either when mom was showering or when she was changing (I'm not sure which). Of course mom has been frantically searching for her jacket and quite upset that my dad "lost" it. Not to fear. She has found ways to improvise. Each day, we find her with something new worn over her clothes in place of the lost jacket. It might be a dress, dad's t-shirt (worn inside-out and backwards) or dad's jacket. But mom is resourceful and creative!

Wednesday, April 1, 2015

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.

Monday, March 30, 2015

Another Turn

Just when we think we have things settled down, we hit another bump in the road. You can never expect anything to stay the same for too long with this disease.

For the past several months, we've had a new routine that has consisted of two new (paid) caregivers. We knew that the time would be coming where we may have to replace volunteers; they've been wonderful but my dad is afraid of wearing them out. Luckily, mom has been so set in her routine that we generally know when caregivers are needed. For instance, we know that she won't be out of bed until 8:30 and she had her medicine/breakfast/potty routine that she seldom deviates from. It makes it a little easier for dad to get out the door for work in the morning and not worry for the couple hours before caregivers begin to arrive.

Last week, dad related to me that mom had woken up at midnight, disoriented. She thought that it was afternoon and went into the kitchen to make her sandwich. Dad followed her in there, put her sandwich away and took her back to bed. But she was very unsettled. For the better part of the night, dad tried keeping mom in bed, blocking her from getting out as she tried to be sneaky and escape. A couple of times she was successful in her escape and was found in the office, playing on the computer. She had become disoriented one other time, when they were getting ready to go on vacation last summer. She woke up in the middle of the night thinking that it was morning and was trying to get ready for their trip. When dad related the events of the previous night, I was hoping it was just another fluke, as it seemed to be in the summer.

Unfortunately, I don't think that this is a fluke, but rather an advancement of the disease. It is quite common for people with Alzheimer's/dementia to become disoriented and wake at night; they lose concept of time. My dad has had a rough weekend with mom. The disorientation came back. Mom has been waking up at night and thinking that it is night time in the middle of the day. Yesterday, we came over for family dinner and I realized that mom never came out of her room at 4:30 for dinner; I thought it strange. I went back to visit her in the office and it became very apparent that she didn't know what time of the day it was. She pointed to the time on the computer (it was after 5:30 at this point) and mumbled about how we needed to leave soon so that she could take her nap. She was convinced that it was afternoon and we left that night, I was a little nervous for what the night would bring for my dad.

I got a text from my dad at 7:08 this morning, asking me when I planned to come over (which is usually 9:00). After doubling her sleep meds last night, he told me that mom had been up since 5:40 and he was nervous to leave her alone. She was disoriented and upset because she couldn't find her night time medicine. I quickly pulled on some sweats and, without a shower, got my kids (who are on spring break) and car loaded to start my day at mom's. At 7:40 this morning, I found my mom fully dressed, sitting in front of the computer.

"Good morning mom," I said, kissing her on top of her head.

"Why are you here? You need to go too but why didn't he leave me my night time medicine? He's not supporting me and giving me my night time medicine," she rambled.

"Mom, it's morning time. See the sun outside? That means it's morning. Here are your morning medicines," I told her, cueing her to look out the blind at the sunshine and showing her the morning bottle of meds.

"I wonder if I can eat early now 'cuz it's not 4:30 yet," she said, waving a finger at the clock which read 7:49. "I wonder can I eat can I make my sandwich now."

Just then, my dad walked down the hall (on his way out the door for work) and he told mom that she could go eat.

"It's time for your Slim Fast dear, it's breakfast time. You drink your Slim Fast," he told her.

"Yeah yeah? I can go eat now too? I can go make my sandwich now early?"

"You can eat whatever you want," dad answered.

"Oh good oh good! Oh thank you, thank you!" she said enthusiastically. She hopped up from her seat and practically skipped down the hall with a big smile on her face, thanking my dad for "allowing" her to eat early.

Mom sat at the table and began her "dinner" routine of making her pb&j sandwich, pouring her Root Beer in the glass beside her. Try as I might, I could not convince mom that it was actually morning and not evening. I could not convince her to take her morning meds; I even poured them into my hand to show her but she did not see the Sleep Aid medicine, so she could not be fooled into taking her morning pills in disguise as night time pills instead.

So now, here I sit on mom's couch, at 8:50 in the morning. Mom comes out every 10 minutes or so to poke her head out the window and the garage, looking for dad to bring her her night time medicine. Right now she is sitting beside me asking repeatedly where he wants, insisting on night time meds. I don't know how the rest of the day will play out, but I imagine it will be a long day. And an even longer night for my dad. I'm not sure how he is going to handle caring for mom all through the night and turn around to do a labor intensive job during the day. I don't know yet what the answer is. Maybe-just maybe-mom will get back into her routine, but I know well enough that this is all a part of the disease, and it seems to be changing yet again.

UPDATE: It is 9:50 and mom just came out in her pajamas, looking for dad (and medicine). Despite looking out the window and seeing the sunshine, she still thinks it's night time :(

Monday, March 9, 2015

A Day at the Beauty Salon

It's been a while since mom has dyed her hair. In fact, you may recall the last hair dyeing fiasco, which resulted in my dad having to hide her hair dye. I suggested to my dad that maybe it was time to just let mom shine with her gray hairs. However, mom has been pestering him about her hair dye and I know my dad ultimately just wants to make her happy, and so it was decided that we would try taking mom to her hair dresser to get it dyed (by we I really mean I).

For the past week and a half, my dad and I have been prepping mom for her upcoming hair appointment. For the past week and a half, mom hasn't taken heed to any of our promptings. This morning I arrived at her house to find her laying on her bed, waiting for the clock to change, signaling the green light for her to get on with her morning routine. I urged her to get out of bed and get dressed, telling her again that it was the big day to get her hair done. She remained in the bed and mumbled about the clock and then continued on with her normal venting about not being supported as a driver. I took that as a cue.

"Mom, I'm going to drive you today," I said, trying to catch her eye. "I am going to drive you today. We are going to get your hair done. I will support you and be your driver," I said repeatedly. Finally, mom replied with,

"Huh? Where are you gonna drive me?"

I reiterated that we were going to get her hair done and told her to get dressed. After she voiced her concern about me seeing her "Plain Jane and naked", I told her I would leave her room so she could get dressed. A few minutes later, I peeked in on her, only to find her still laying on her bed.

"Come on mom, you need to get up and get dressed so I can drive you."

We continued that conversation for several minutes as she tried to comprehend what I was instructing her to do. Eventually, by some miracle, mom got herself ready to go and came out of her room saying,

"I used to be a good cutter, that girl was a good hair cutter. I hope she doesn't think I look weird."

After a week and a half of promptings, she finally understood that I was taking her to get her hair done!

We arrived at the hair salon a few minutes early, and Crystal was finishing up with another client. Mom walked into the salon and very loudly began asking,

"Where is she? Who is she what's her name, gonna cut my hair?" I showed her that Crystal was still finishing with a client, as all eyes in the salon turned on mom, and she wasn't particularly happy that she had to wait. Nevertheless, she sat down and waited on the edge of her seat for another 15 minutes until it was her turn.

And then...everything went downhill.

Mom isn't used to having her dyed at the salon, so she couldn't understand what Crystal was doing to her.

"No no, this isn't right, this doesn't look so good," mom said, as pieces of hair were pushed forward (and sticking up) to color the underneath layers of hair.

"You need to dry it...why is it severely wet...no this isn't so good..."

Crystal came up with the clever idea to put a glove on mom's hand (after mom repeatedly tried touching her head). I thought that by putting on a glove it might spark a memory of wearing them when she used to dye her hair, thereby signaling to her that she was getting her hair colored. No such luck. Though she sat still for the remainder of the time Crystal colored her hair, she continued to be upset that she wasn't doing it right. When Crystal was finished with the color, she put a plastic cap on her head in an effort to prevent mom from rubbing dye all over her hands.

"It really needs to set in for about 35 more minutes," Crystal said, with an apprehensive look on her face. "I mean...we could rinse it out earlier if we have to and it'll still have some color, but the longer the better."

I looked over at mom, who was pulling the cap off her head and reaching for Crystal's blow dryer and brush. I moved in-between mom and the dryer and tried to distract her with her pb&j sandwich that I had brought along.

"Look mom, let's have some lunch while we wait. Look, I brought your sandwich. Peanut butter and jelly; yum," I said, waving the sandwich in her face.

Mom could not be deterred.

"No I need to go now, let's go. I need to dry my hair."

Round and round we went for another long 5 minutes- mom trying to rub her head, get ahold of the blowdryer, talk about going home- until I turned to Crystal in defeat.

"Let's just rinse it out. There's no way I can make her sit here for another half hour."

"Come on mom, let's go wash your hair now," I said, gesturing towards Crystal, who was waiting at the back sink. Mom did not understand my direction, however, and she wouldn't budge from her seat. She insisted on drying it before she got up and reached again for the blow dryer.

"No mom, we need to rinse your hair first. Let's go walk to the back sink. Crystal will wash your hair and then we can cut it," I coaxed her.

I couldn't grab mom's attention; she was too fixated on her task of getting ahold of the blow dryer, so I had to hold onto her arm and try to pull her up.

"Owe! No you're hurting me, owe no!" she wailed, as I pulled her up and out of her seat. She stubbornly dragged her feet as I clasped arms with her and moved her forward to the sink. The other ladies in the salon tried not to notice the scene mom was making. I pretended not to let it phase me. Crystal looked at me helplessly, with sympathy in her eyes. Somehow we were able to convince mom to sit down but I had to physically move her head back to start rinsing her head.

"Owe, that hurts, owe," mom continued. I put my right hand under her neck and cradled her head while Crystal washed her hair. My left hand laid across the top of her chest and occasionally I had to push her head back down as she attempted to get up (I tried to be as gentle and loving as I could be). Mom tapped her feet on the ground nervously and she continued to whine that we were hurting her. We finished after just a few minutes (which seemed much longer!) and showed mom back to her seat. She was very apprehensive about going back to the chair, as she was DONE with the whole hair ordeal by this point. She wanted to go home.

"Mom, she's just going to cut your hair now, see? She's going to cut your hair," I said, prompting Crystal to hold the scissors to signal our next move.

Begrudgingly, mom sat back to let Crystal cut her bangs. As soon as they were cut, however, mom went reaching for the blow dryer. Crystal dried her bangs for her and expressed concern about starting the back.

"If I start it, I'm going to have to finish it," she said.

I told her to go ahead and do a quick job while I attempted to keep mom settled enough for Crystal to finish the job. But mom was fixated on that darn blow dryer. She kept reaching for it and Crystal finally told me to go ahead and let her have it while she finished the cut. I was barely able to hold mom down long enough for Crystal to finish the cut (which Crystal, who is an awesome hair dresser, wasn't too pleased with her not-so-finished job) and then mom was up and taking care of business.

Crystal went to tend to another client (who was waiting to get her foil taken out and was on a time constraint) while mom finished drying her hair and I retrieved my purse.

"Where's her money? You need to give her money, did you give it to her?" Mom badgered me about paying Crystal until she saw the bill in my hand. Exhausted, I handed Crystal her money, thanked her (and her other client) for their patience, and quickly made my way out of there.

Normally, I think I can handle my mom quite well. But today left me feeling very worn out and defeated. I want my mom to be happy. But I can't put myself or her through this again. On a side note, Crystal did later text me and offered to make a house call the next time mom needs a haircut, which I thought was so nice of her. I do not think we will be messing around with hair dye anymore.