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.

Tuesday, January 27, 2015

Music For Mom

Music is an entryway to the soul.

Several people have sent me links about the effects of music with dementia patients. Music has been used as a form of therapy for Alzheimer's and dementia patients. I even read a story about one man, who had Alzheimer's and had not spoken in four years, who attempted to speak again after a month of music therapy. While much of how the brain and body processes music remains a mystery, this much we know: there is a strong connection between the brain's auditory cortex and it's limbic system, which is where all emotions are processed. Music has been known to relieve agitation, reduce stress, decrease problem behaviors and so on.

Mom used to love listening to her music; even in her stages of dementia. I've noticed that lately, however, mom's radio has been very quiet. While I was over at mom's a few weeks ago, I decided to see if I could rekindle mom's love for music. As she sat on her bed, waiting for the clock to change to 12:00, I dusted off the CD player by her bedside and put in her favorite CD- a Mormon Tabernacle Greatest Hits CD.

"Mom, do you remember this music?" I asked. Mom gaze did not break from the clock.

"Born Free!" I sang in my operatic voice, trying to spark some memory with mom. She shifted slightly on the edge of her bed but continued to stare at her clock, ignoring my serenade.

I changed the song to another familiar song.

"Oh what a beautiful morning! Oh what a beautiful day..." I sang, again in my exaggerated opera voice. Mom used to wake me up with her own operatic version of this song long ago, when I was a child. Oh how it annoyed me then, in those early hours of the morning! And oh, how I'd do anything to hear her sing it just once more!

I put my arms around mom and sang very theatrically, trying desperately for a response. Mom finally looked at me from the corner of her eye.

"It's 11:55 too, just a few more minutes and it's lunch time," she said, in her slurred speech.

"Mom, do you remember this song?" I said, redirecting the conversation.

After asking for a few more times, mom finally looked at her CD player suspiciously and said,

"I used to use that too and put on my good music too from that place far far away."

"Yes mom, you mean the Mormon Tabernacle Choir. This is them. This is your favorite CD. You used to listen to it all the time," I answered.

After a couple more times of repeating that explanation, mom finally responded,

"No this isn't right, I don't know this."

To be honest I wasn't really expecting that she would remember. But coming face to face with reality is always a little tough. After my silly serenades failed to spark any memory with mom, I just sat beside her and put my around her, choking back the tears. I told her that I loved her and that I missed her. Mom continued to stare at the clock and 11:58 she broke free from my embrace and stood in front of the clock. She waved her hand, mumbling,

"11:58, good, almost time to eat lunch when it changes to 11:59."

No sooner than the digital clock read 11:59, mom sprinted out of her bedroom and down the hallway, towards the kitchen to make her sandwich.

Dementia is such a confusing disease. Sometimes I feel as if we are stuck in limbo. Mom is still living, yet she's not really living. Each time I try to spark her memory or make a connection with her, I know my efforts are in vain, yet I can't help trying.

Monday, January 19, 2015

Still Alice

A few months ago, I saw some posts floating around on a few Facebook Dementia/Alzheimer's pages about a new movie coming out, called "Still Alice". The movie stars Julianne Moore, who plays a 50 year old woman diagnosed with Early Onset Alzheimer's Disease. People in the dementia community are encouraging others to support this movie and raise awareness about early onset dementia. It sounded like a movie I'd be interested in seeing and I learned that it was set to release on January 16th.

I anticipated the release of "Still Alice" and had plans to see it over this past weekend. When I scrolled through my phone to view the movie listings, however, "Still Alice" was nowhere to be found! Turns out, the movie is an independent film and is showing only in a select few theatres. I was pretty disappointed. I'd been hearing great reviews of the movie and Julianne Moore even won a Golden Globe for her performance (and she's up for an Academy Award!); I was looking forward to seeing it. Instead of sitting in a movie theatre Saturday night like I had planned, I ended up in Target with my hubby and kids. I had only recently learned that this movie was based on a book so while shopping, I made a detour through the book section, and look what I found!


Even though I was in the middle of reading another book, I began reading this book Saturday night. And I couldn't put it down. I just finished all 292 pages this morning, less than 48 hours after buying the book. Even though I may have more of a vested interest in a book about dementia, this book isn't written exclusively for people who are dealing with the illness. It was very well written and a great read for anybody. It does give a lot of insight about the illness and the hardships that come with it, but the author delivers it in a way that is compelling; you don't feel like you are being "taught" about dementia as you read. You feel as though you are given insight into Alice's life, from her perspective, as it is turned upside down with her diagnosis. The book was powerful with raw emotion. If you are a big reader, you will like this book.

Some of you may wonder how I can read the content of this book, given my situation with my mom. It's easy: I sat with a box of tissues next to me! In all seriousness, this book gave me insight into my mom's perception of the state she's in. There were so many similarities between and Alice and my mom, but one major difference is that Alice knew she had the disease; by the time my mom received her diagnosis, she didn't know what Dementia or Alzheimer's was. I often wonder what thoughts were going through my mom's mind (and still are going through her mind!) as she began noticing her memory problems. As I read about Alice, I felt so much compassion and empathy towards to my own mom. It was also somewhat reassuring to know that, even though she may not remember a lot of things or communicate what she is thinking, there's a part of her still there that appreciates all the kindness and love we have to offer. She is still a person, maybe not the same as we knew her. But it reminded me to never throw in the towel and assume that she's too far gone to know what she wants or how she feels. When I finished reading the book, I went back to my mom's room and beside her on the bed. A few tears rolled down my cheek as I put my arms around my mom and I told her I loved her. I received no response in return, but I have to believe that even though she can't communicate a response, something is stirred inside of her.

I highly recommend this book for anyone to read. It is engaging, intriguing, heartwarming, sad of course; but it also bring awareness to the disease and teaches (in a non-teachy way) how to recognize the signs of early onset dementia. It is far more common that people realize! Catching it early on can help a lot in the management and slowing-down of the disease process for many dementias, including Alzheimer's. If you are looking for something to pick up and read, pick it up or order it on Amazon! Keep your eye open for the movie. I believe it will be released Nationwide as the Oscars draw closer.



Monday, January 12, 2015

A Full Update

It's been a while since I've do a full update on mom. I used to post an update every 6 months, following her check-up with UCLA. Since we've discontinued our visits to UCLA, I haven't been regular about posting updates. So here it is; a full evaluation of where mom is as of the New Year, 2015.

LANGUAGE

Although mom's language showed some slight improvements a few months ago, it quickly slipped away. If you don't talk to mom on a regular basis, it is likely that you won't understand much of what she says. I'm usually able to make sense of what she is trying to say (mostly because she is very repetitive in every conversation...one clear word will tell me what topic we are discussing), however, there have been a few times where I have no idea what she is trying to say. She speaks rather quickly, but most of her speech is slurred and mumbled.

CONVERSATION

This is different from language. Mom used to talk about her childhood A LOT; memories, events from the past. She loved to talk about religion and her pioneer ancestors. As of now, there are only a few things she will talk about: how weird she looks, how nobody supports her to drive her places, how those stupid doctors shouldn't have cancelled her as a driver, how she needs more make-up, how she needs her medicine....that's about it. I never hear her talk of the past anymore. She really doesn't comprehend much of anything we say. IF she does, it is only after repeating ourselves several times and then she might pick up on one word that makes a connection. She talks but she doesn't listen. It's near impossible now to have any kind of conversation with her.

HYGEINE

Unfortunately, this skill is rapidly declining. Mom will go several days without a shower and oftentimes my dad has to corner her while she is changing (either in the morning or the evening) and force her into the shower. Once she is in the shower, she is able to wash her hair and body with prompts from dad. Most days mom will hang her head in the sink in the morning to wash her hair and sometimes she will step in the shower to sponge bathe particular areas. But it has become a real struggle to keep mom fresh and clean.

She still brushes her teeth after every meal and washes her hands after she uses the bathroom.

GROOMING

Mom does still dress herself. However, most days she wears her shirts backwards and sometimes her clothes are inside out. She doesn't notice it at all.

She still attempts to do her hair and make-up. Lately, her eyebrows have been blue but she doesn't seem to notice it. She puts on LOTS of body splash. She used to have 2 favorite scents from Bath & Body Works (Vanilla and Moonlight Path) but now she is down to only one scent: Moonlight Path.

DAILY ACTIVITIES

She hasn't done much for a while now, but her days are more and more dictated by routine and familiarity. She rarely leaves the house; we can't get her to come over for family dinners or gatherings anymore. Her days consist of sitting on her bed while she waits for medicine time (she sits and waits for at least an hour before each time), playing computer games and waiting at the window for my dad to come home so she can pester him to let her drive places. Once in a while she will walk to her sister's house or attempt to walk up to the Avon Lady's house. Other than that, she is a hermit.

EATING

If we thought her menu was limited before, it's nothing compared to now. She has her "Slim Fast" for breakfast every morning and two Ensures a day: a vanilla Ensure with her daytime medicine and a chocolate Ensure with her night time medicine. She eats peanut butter and jelly sandwiches everyday for lunch and alternates between sandwiches and "Slim Fast" for dinner. If we're lucky, dad might be able to convince her to eat a turkey, cheese and tomato sandwich for dinner. She no longer eats salads, tortellini, or even fruit. I don't know what will happen when she forgets what a sandwich is; it's the only solid food she eats!

She is very messy when she eats. She always ends up with jelly on her face and most times it is all over the table; sometimes the chair and floor. Again, she is unaware of the mess she makes and doesn't clean up after herself.

SLEEP

She seems to be sleeping through the night...although I'm not positive about that. My dad would have to speak on that one. At this point, she stays in her bed through the night and knows when it is time to sleep. She continues to nap daily, but her timing has changed slightly (she goes down much earlier now).

CONCEPTS

Mom seems to have lost the concept of time. She can still tell you the names of the months, but she doesn't seem to know what month we are in or what day of the week it is. In fact, my dad told me that on Saturday she thought it was Friday. I have tried to point out days of the week on the calendar for her and she doesn't seem to connect the dots. She still knows what time to take her medicines, but I'm not so sure she understands the meaning of a minute or hour which would explain why she sits on her bed for hours at a time staring at the clock; she is waiting for it to read a specific time as her cue of what to do but doesn't really understand how long it will take until the clock changes to that time. That's my theory anyway...

She has no concept of money. She knows she needs it, but doesn't really understand the significance or the value of costs.

So, there you have it-in a nutshell. I'm not sure if I missed anything, but you get the idea. It's a little frightening to see what is in store in the next 6 months, and the next year. Sometimes I don't realize just how bad it's gotten until I see it spelled out. It's so heartbreaking to see mom's quality of life gone. I really don't know what keeps her going, she lives for her medicine and computer games. It's a very depressing life, devoid of any pleasure. :(