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.

Friday, February 20, 2015

Our Eventful Morning

Sometimes, a day spent with mom can be quiet and a little boring. She rarely comes out to the living room or kitchen anymore, unless it is to retrieve food or medicine. She keeps herself tucked away in her room or in the computer room. On those days we sometimes wonder, does she really need someone here at every hour of the day?

And then we have a day like today. And we are reminded with certainty that mom should not be left alone.

To make a long story short, we had nobody to watch mom this morning. I found out yesterday that her usual Friday morning caregiver had a last minute doctor's appointment that she had to attend. Everyone I called had appointments and I had a dentist appointment this morning as well. And you know how those go...if you don't give a 24 hour cancellation notice, they charge you for the missed appointment. Mom had told me yesterday afternoon that she didn't want anyone over this morning because she had to wash her hair and take a shower. So after a few fruitless phone calls and talking with my dad, we (apprehensively) figured she would be okay until I was done with my dentist appointment, at which point I would come by and stay with her.

I breathed a sigh of relief as I walked up to mom's front door after my appointment this morning; both doors were closed and locked. The last time mom had made an escape, she left the door cracked open. I assumed she was home. I let myself in the house, locked the door behind me, set down my things, and got my son settled in. Then I made my way to the back of the house to see what mom was up to. The door to the computer room was shut and it was about that time that she would normally be playing her games. I turned on the knob, expecting it to be locked (as usual) but to my surprise it immediately opened. Mom's desk chair was empty. That grabbed my attention right away and as I glanced further down the hall, my heart skipped a beat; mom's bedroom door was wide open (she never leaves her door open when she's in there). I rushed to her room and as expected, her bed was empty. I looked in her usual hiding places-the closet, bathroom, alongside her bed.

"Mom? Mom, where are you?!" I called, trying not to panic.

When I searched all the rooms in the house and couldn't find my mom, I knew well enough that she had gotten out. I grabbed my purse and my keys and my son (who was protesting that he hadn't gotten his peanut butter and jelly sandwich yet) and hurried out the front door. I figured there were only a few places she would have gone: the Avon lady's house (which I would've likely seen her if that was the case, as the Avon lady is at her other job right now and mom would have been walking back home), the grocery store or my Aunt's house. Being that it is Friday, I turned on the street leading to my Aunt's house.

I made it almost the entire way to my Aunt's house when I finally spotted my mom at the top of the road, wearing her thick, fleece blue jacket and jeans and carrying one purse on each shoulder (one is for her lunch). [The advantage to mom wearing the same clothes everyday is that she's easy to find or describe in a situation like this!] She was walking my direction at the top of the street but not in her usual, fast paced sprint. Instead, her walk looked almost shuffled and she moved slowly, looking around as though she was confused. When I pulled up closer, I saw that her face was bright red and her make-up was dripping with the sweat on her skin. I pulled over to the side of the road, put the car park and put on my hazard lights and called to her,

"Mom, mom! It's me, Cassandra. Your daughter."

She looked confused.

"Ellen, Ellen? I'm trying to find Ellen's house..."she mumbled, waving her finger in the air.

"Mom it's me, Cassandra," I said, as I approached her. I put my arm around her and felt her hair, drenched in sweat. I directed her to the car, repeating to her who I was. After several seconds, she finally registered that it was me.

"Oh oh, Cassandra? You're Cassandra? But I couldn't find Ellen's house-it's so weird-I couldn't find it..." she said (with some other unrecognizable words mixed in here and there).

"I know momma, you shouldn't leave the house alone. I'm so glad you're okay," I said, helping her inside the car.

She continued her chatter about how she had been looking for her sister's house and it was obvious that she was very flustered and very tired. My heart hurt as I looked at my poor, confused mom. I swallowed the lump in my throat and said a silent prayer of gratitude that she was okay. I took her home and got her settled in (lunch and nap) but despite my efforts, I couldn't get her to take off her jacket or drink any water (although she did take some sips of her root beer). She complained that she was cold and it was no wonder; her shirt was completely drenched in sweat. Her eyes were pink and her face still flushed even half an hour later, but I could not get her to cooperate with me to change her clothes or take more than a small sip of water.

For now, she is resting in her bed. I am very glad that she is safe. It was a rough reminder that mom shouldn't be left alone. Next time, I'll just pay the darned appointment cancellation fee!

Wednesday, February 18, 2015

Foundation Update

Every now and then I like to give an update on all that is happening with The DEANA Foundation.

I've been working like a mad woman on this foundation. We've created an official Facebook page and ever since then we've been working really hard on getting our name out there; I feel as though I have another unpaid job. Ha ha. But I am so passionate about the cause that it hardly seems like work. I have an awesome board (4 other members besides myself) who all have strengths that are truly benefitting this foundation.

We are officially an incorporated charity and have filed for our non-profit status (just waiting on the IRS!). We have a beautiful logo that my cousin, Sam Harrington, designed. Note that he used my mom's silhouette. Amazing.

Our official website is up and running. We have plans to update it, but wanted something in the meantime while we raise enough funds to get it professionally detailed. The website address is: www.thedeanafoundation.org

We've hosted our first successful fundraiser. We had a pizza party at a local restaurant and we raised over $500 for our foundation. I was touched by the show of support from family, friends and our community. We have already began planning for our big opening event, which I am SO excited about. We are waiting until we've obtained our non-profit to set a date, but we are aiming for the end of August/beginning of September.

Right now, we have launched a campaign to help really get us up and running. We have filing fees to cover, our website, insurance to obtain, a venue to book for our "grand" opening event and other overhead costs (business cards, advertising, merchandise for our shop, etc). It takes a lot to get going, so we've created a campaign on indiegogo. Basically, we have 40 days to raise $3,000. We are currently at $400 and have 33 days left. I made a beautiful slideshow that is featured on our campaign. If you haven't seen it yet, visit our campaign and click on the "gallery" tab. You can do that HERE.

We have so many projects and events underway right now...I won't bore you with all of the details, but things really are coming along quite well. My vision for this foundation is to reach and help families across the globe. As we are just getting started, we will likely be helping those in our community first (that's where we receive most of our support right now). BUT, I have plans on how to expand this foundation to reach everyone, and hopefully that will happen very quickly. It will require some help from others across the country, but I'm happy to report that I already have contacts lined up to help in other states. Eventually, I want to see different chapters of The DEANA Foundation across the globe, much like the Alzheimer's Association. It may seem like a big feat, but we will get there, even if it takes us a decade or two to do it! If anyone is interested in volunteering and helping The DEANA Foundation in any capacity, please contact me or visit our website to learn how!

I want to thank everyone who has been a support to this foundation thus far. For all of the likes and shares on facebook, the donations, the participation in our first fundraiser...the list goes on. We could not do this without your help and support and we thank everyone who has contributed to that. Thank you, from the bottom of my heart!

Tuesday, February 17, 2015

Blue Tuesday

I was going to write a completely different post today, but my head is in a different place. So here it goes.

I try not to post a lot of negativity on my blog. I try to write in a positive, uplifting and encouraging manner. I try not to let dementia get me down and I try not to feel sorry for myself; there are millions of other people out there who have lost their moms at a young age. But some days are just harder than others to keep smiling.

Today is just one of those days. Last night I was a bit emotional over some things, and as I lay in bed holding back the urge to cry, I turned to my husband and said,

"I wish I had my mom to talk to. She would know the right thing to say to me."

There's just something about a mother's love that compares to none else. My mom was the kind of mom who was always there to lend a listening ear and support. She would tell me the truth-even if I was in the wrong-but I knew she loved me and I always felt like she had everything figured out. Sometimes I feel a little lost without her; it's hard to figure things out on my own.

So, for those of you reading this post who still have a mother around, give her a call. Tell her you love her. Tell her how much she means to you. You never know what time you have left, and you never how much that time means until it's gone.

Wednesday, February 4, 2015

The Tip of the Tongue

The other night I had a dream. I woke up in the morning, knowing that I had a dream but I couldn't remember exactly what it was. I felt really bothered because the memory of it was right there, sitting at the back of my mind; I had a slight feeling that I knew what it about. But try as I might, I couldn't pull that memory to the forefront. I could not remember what I had dreamt. It was such a strange feeling- to have the sense that I knew what my dream was about, but unable to retrieve that memory.

The thought hit me: I wonder if this is how my mom feels?

Does she hear background noise, words in conversations around her, and have the sense that she knows what is being said but is unable to retrieve that memory and make sense of the words? Does she see the faces of her loved ones, and know that she knows them, yet she can't quite place them or figure it out? Do the words come to her, at the tip of her tongue, but she just can't spit it out? What a frustrating feeling it is, to feel the sense that there is something you should know, but unable to pinpoint it.

I imagine this is mom's whole world now. Each day, more and more of the things she once knew are pushed to a place where she can longer retrieve the memory of it.