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. :(

Monday, January 5, 2015

Christmas 2014

This Christmas went about as well as expected. Mom had no idea what Christmas was; it is the first year that she has completely forgotten the holidays. That was a little tough...we kept trying to spark her memory with different Christmas decorations, traditions, etc. But it was to no avail. Mom lives in a small little world that revolves around medicine, eating and sleeping. She knows about little else.

My Aunt Claudia (mom's sister) planned a Christmas Eve party at her house. This used to be our family tradition-up until my grandparents died a few years back. Christmas Eve was always a lovely affair. Grandma spent days beforehand baking an array of Christmas goodies and prepared tins of treats for everyone. Dozens of presents were lined under the tree for all of the kids, grandkids and my grandparents. Nobody was forgotten. Aunt Claudia really wanted to recreate Christmas Eve and really wanted my mom to be there. We knew that mom wasn't going to understand the significance or meaning to our traditional gathering, but we really wanted to try to get her there anyway. It was nothing short of a Christmas miracle that dad was able to get mom into the car that Christmas Eve afternoon and across town to her sister's house.

When mom arrived at her sister's house, she walked through the house, searching for people and trying to make sense of who everyone was. Unfortunately, she never connected who her nieces and nephews were and it even took her awhile to figure out who my brother and his wife were (they had arrived at my Aunt's directly from Arizona). She paced the house for a good amount of time; it was hard to get her to settle down. She walked around, repeating,

"I miss my brother Jeff, I wish he was here I miss him."

We laughed a couple times when she wandered around searching for the grandkids - my sister's daughter, Raelynn, in particular. At one point, mom stuck her head outside the back door in an effort to locate Raelynn and as Raelynn responded to grandma's calls, my mom took Raelynn by the hand and brought her over to my sister, stating,

"Here you need to be with your mom, you should stay with your mom."

We were able to finally get her to settle down and sit with us; for a little while, anyway. When she was ready to go, she was ready to go! She charged out the door and plopped herself down inside dad's truck at one point. She eventually had to go potty and reluctantly came back inside the house. Before she could head back to the truck, we pulled her into a family picture and dad was able to settle her down once again (I think he bribed her by showing her her nightly medicines).

She didn't understand one bit of Christmas Eve, but we were able to get her there and spend some time together as a family. My Aunt did a beautiful job of recreating our Christmases of the past. I know that we will look back on this memory with fondness and I'm glad mom was able to be there in some small way.

Christmas Day didn't go as well as Christmas Eve. Of course mom is set in her own routine so it meant nothing to her when we all showed up Christmas morning for our traditional Christmas breakfast and gift exchange. We tried to get her to sit with us to open up some presents, but it was her time to sit on her bed and watch the clock for the next hour until it was time to potty. My sisters and I took in some presents for her to open in her bedroom. I was the smart one of the group (ha ha) and I put her presents in an open basket rather than in a gift bag, since I knew she wouldn't understand that concept. It's hard to Christmas shop for someone who just sits on her bed half the day, so we all opted out of sentimental gifts and bought her practical gifts that she would enjoy instead, which includes: make up, Ensure and Bath & Body Works. When I presented her her basket, she couldn't connect that it was a gift. She must have thought that I was showing her something that she already had. It wasn't until my sis-n-law stepped in and starting taking body lotions out of her gift bag that the light bulb suddenly went on.

"Oh, this is for me? You bought this for me too? Oh yeah, that's so good."

And with that, mom took her gifts and put them in her home.

Mom lost interest in viewing her other gifts after she put her lotions away, so when she came out of her room to take her empty "Slim Fast" cup to the kitchen sink, we redirected her to the couch in an effort to get her to open up the rest of her gifts. She didn't understand what we wanted her to do and she kept trying to get up to leave. My brother and I held her on the couch for a few minutes, with me draping my legs over her in an effort to get her to stay, he he. As we tried to explain to her that she had more gifts, mom complained about how she needed to go up to the store to get more make-up. My dad brought over his gift bag to her which contained more make-up than any one person needed. When mom inspected eyeliners (tearing it out of it's packages to make sure it was the right one) she wiggled her way out of our grasp and made a mad dash to her bathroom, where she put her gifts in their home.

All in all, I enjoyed the holiday season. I wasn't expecting much with mom so I wasn't let down as hard, if that makes sense. I still miss her all the time and it's so disheartening to watch her slip away and disengage with the family. I just can't imagine what next year will bring, although traveling anywhere (even across town) will be out of the question I'm sure.

You might also notice some other changes in mom. She has started using her blue eyeliner/eyeshadow for her eyebrows. The first time this happened (a few weeks ago) I thought it was a simple mistake. But she's been doing her make-up like this ever since. She also wears her shirts backwards most days. :(

Wednesday, December 10, 2014

The Hair Dyeing Fiasco

Every time my mom sees my dad, she complains about him not being "supportive" of her. He won't give her credit cards or money, he won't give her the keys to the car, he takes away her blow dryer, he threw out her holey clothes...she's fixated on the things he won't let her do-the ways he won't "support" her and pouts endlessly about it. I feel for my dad; obviously he is doing what is best (and safest) for my mom, but it must still be hard to have to take that independence away from your spouse and be harassed about it day and day out. In fact, some things have taken a little too long for him to "take away" from her in my opinion, and no doubt it is because he is trying to let her hold on to whatever she can for as long as she can. It's a hard position to be in.

One of the few things that mom does everyday is her hair and make-up, as you all know from my other posts! She religiously dyes her hair every 8 weeks and marks the calendar for every 8th Friday as "dye hair" day. Mom is losing her concept of days (I'll touch on that in another post) so on Monday she had it in her head that it was hair dyeing day-which means that I was the lucky one on duty to supervise mom in her hair dyeing adventure.

When I first arrived, I had no idea that mom was dyeing her hair. When I heard both the sink running and the blow dryer going, I knew it was time to peek in on her. I found the blow dryer on the floor beside her, blowing on the rug, and mom bending over the sink in my dad's Rolling Stones t-shirt. She wore a plastic glove on her right hand, which clued me in on what she was doing. As I approached mom at the sink, I saw reddish-brown water dripping all over the counter and into the sink. What was most alarming, however, was the stream of dyed-water tricking into her eyes.

"Ouch, this is so weird ouch, I don't know why it's hurting here ouch," mom mumbled, rubbing her plastic, dye-covered gloves over her eye.

"Mom, no...you shouldn't touch your eyes. Don't touch your eyes."

I tried to make her understand that it was the hair dye dripping into her eyes that was causing her discomfort. I tried to convince her to hop into the shower. Of course she didn't understand any of my direction. Instead, she nudged me away and continued to fill her Princess House Crystal glass with water and dump it over her head. I admit I really didn't know what to do and so I let her continue to rinse. I suppose I probably should have stripped her down and thrown her in the shower. But I felt as though that might be a violation of her and I was unsure if that was the right answer (aside from the fact that mom is bigger than me...I'm not sure if I could handle her alone). When mom felt as though she had rinsed enough (all of the dye was NOT out of her hair), she spun her head around and, without wringing out any water from her hair, made her way to a towel she had hung over the shower stall. Water and dye left a pathway to her shower stall and stained the clothes she had thrown on the floor.

Needless to say, there was a huge mess to clean up after this ordeal; obviously the biggest concern is not the mess, but rather the hair dye harming mom's eyes. I regretted having to relate the details to my dad. This is going to be another big obstacle for him and I feel for him. Yet again, he will be the "unsupportive" husband and will have a huge battle on his hands when he refuses to give her her hair dye. We could try to dye her hair for her, but I don't know if she will understand what we are trying to do or even allow us to do it-she is very set in her routine and her way of doing things. Maybe we can convince her to let her hair stylist do it for her; again, it's not part of her routine. Time will tell.

Tuesday, December 2, 2014

The Last Holiday

Last summer, we traveled to Arizona to move my brother (and his family) out of his apartment and into a house. My dad came up with a seemingly great idea: let Joe and Natalie host Thanksgiving this year in their new place. Although I loved the idea of getting away and going to Joe's, I was very wary about how mom would handle the trip. How would she do on the drive? Would she understand where/why she was going? Would she engage at all or be miserable out of her comfort zone? How would we be able to go out anywhere all together?

Not to worry, says my dad, the optimist. He planned to bring his fifth wheel trailer; after all, there is a trailer camp a mile down the road from Joe's house. Mom would have her own space to sleep and get ready. But what about throughout the day? we all wondered. Dad figured that if Joe set up mom's favorite computer games on his computer, mom would be content to stay at Joe's house throughout the day to play games and maybe, just maybe, engage with family.

Well...day one seemed to be off to a good start. Wednesday morning, dad dragged mom out of bed, showered her and had her in the truck, ready to go, by 8:00. That is a huge accomplishment for mom. Even though she couldn't understand where exactly they were going (she had it in her head that they were going to the mall and was annoyed with dad many times for going the wrong way), by the time they had arrived to Arizona and we answered the front door, mom came plowing through declaring,

"Joe? Joe? Is this Joe's house too?"

She came in and we all said hi and greeted mom, telling her how happy we were that she was there. Just why she was there, she had no idea. I suppose she thought they drove five hours to simply say hello. At any rate, we brought Joe and Natalie's 9 month old baby, Zach, over to mom and sat him in her lap in an effort to engage her. Most times, she will not look much at Zach and seems oblivious to his presence. But this time, she actually smiled at him and for a brief moment even held him (with Natalie's help, of course). It was such a touching moment to witness mom finally engaging (even if only very briefly) with her youngest grandbaby. It was a moment that I am sure we will all remember.

[And we'll all remember (with giggles) the moment afterwards when she pushed Zach back towards Natalie and said,

"She's your mom she's your mom, go to your mom."]


But alas, all good things must come to an end. Within a couple of hours, mom was ready to go. Dinner and medicine time were coming up and mom wanted to be in her space. Dad took her back to her trailer and we thought (or had hoped) that she would be content in her home-away-from-home. Unfortunately, mom was ready to go home. Nevertheless, she settled down and the next morning (Thanksgiving) dad was able to get her back over to Joe's....for a little while. She was restless again by noon time and insisted that dad take her home. Dad eventually gave in and took her back to the trailer for a nap. I suspect the only way he got her back over to Joe's later that afternoon was that she was hopeful he was obliging her requests to go home. Needless to say, she was not happy to be at my brother's house. For the next two hours, she paced, she complained, she tried to find ways out of the house (the closet, the garage, the front door). There were a couple of times we had to guard the door and a couple other times we had to bring her back inside after her attempt to escape to the truck. We tried to get her engaged in computer games, but that master plan failed. She wasn't familiar with Joe's computer, especially because it was a laptop rather than a desktop. She insisted that it wasn't right and would not even give it a second glance.

And my dad...his despair was plain to see. Thanksgiving is his favorite holiday. I know he was really looking forward to all of us being together and spending time together as a family. He hardly spoke and I could see the sadness in his eyes. He didn't even eat his pie-we made both of his favorites: pumpkin and coconut. I hope I'm not crossing the line by writing about this, but how can you not feel depressed under these circumstances? As hard as it is for me and much as I miss my mom, she is my dad's wife, his life partner, the love of his life. We tried to get him to laugh during dinner and lighten the mood, but when he finally spoke, reality hit me hard when he said,

"This is the last holiday".

We all know this, of course. Mom barely engaged in the holidays last year. This year it is completely gone. And so it's hard for my dad to carry on and celebrate the holidays without my mom.

"The magic is gone," he says.

We tried to convince my dad to move the trailer in front of Joe's house that night; he was in no mood to deal with it. After mom swung her bag and hit dad in the back of his head (in an effort to get his attention to take her home), dad got up from the table and took mom back to the trailer for the night.

Dad was ready to take mom back home, but we still wanted him to stay and visit with us and we really wanted to boost his spirit. The next morning, my brother, nephew and I went to dad's trailer and told him we were there to help him move the trailer to Joe's house. Surprisingly, he gave in. We packed him up and set him up at Joe's house. At least there, he could come inside to visit while mom remained where she was a little more comfortable. For the next couple of days, dad was able to come inside and visit with us while still keeping an eye on mom. We watched movies, he rode his scooter with the kids, we celebrated my brother-in-law's birthday. We spent some time shopping and taking the kids to the park and whatnot, but my dad stayed behind. He didn't want to even deal with mom out in public; he already felt so defeated. It was disappointing that we couldn't all go out together. My brother stayed behind and hung out in the trailer with my parents while we took the kids out on Saturday. Mom continued to nag dad to take her home, but he seemed to be in better spirits about it than on Thanksgiving Day.

Originally, dad had planned to stay until Monday to beat traffic. But he was tired and felt like he was keeping mom prisoner, so he left with us on Sunday. Mom was restless most of the way home and was upset that dad was "going the wrong way".

"That's not the way you go, you shouldn't go that way, you're so stupid," she'd say.

When we stopped for lunch, we had to practically drag her inside the restaurant and dad had to trap her in a booth while we ordered his lunch. She kept trying to pinch him to get free and asked if we were at the "food place up the street."

"Is that store Stater Brothers over there too? Can I walk home now?" (We were barely at state line).

We made it through lunch without her escaping and continued our journey home. Because of the holiday traffic, our 5 hour drive turned into 8. Thankfully my dad had my nephew in the truck with him to help keep him sane, but it was a difficult drive, no doubt.

So there you have it. I wish I could say it was a wonderful trip with lots of grand memories made. Don't get me wrong, we had some fun and laughs and did make some memories, but I know it was a big let down for my dad. Needless to say, this was not only the last holiday, but it was also mom's last trip. I know we've said that the past couple of trips, but this trip surely sealed the deal.

And now...on to Christmas.

Monday, December 1, 2014

Mom's Famous English Toffee

IT'S THAT TIME OF YEAR AGAIN!!!

Mom's English Toffee was such a success last year that we are doing it again! From now until Dec. 21st, you can order my mom's famous English Toffee. Please note that I make up the orders when I have the right amount to complete a whole batch. If there is a specific date that you want/need the toffee, please specify that for me. Otherwise I will start making batches the week of December 8th and filling them in complete batches so none goes to waste. It ships well so if you are in another state, you can still partake in this deliciousness!! I send my toffee out priority mail to ensure that you get it quickly. Please carefully select from the options below, as there are a few options (two for shipping and one for local pick up). If you prefer to pay with cash or check, just let me know!

TOFFEE PRICES FOR SHIPPING

*The shipping reflects in the check out section. There are two shipping options due to do higher costs for higher amounts of toffee ordered. Shipping for 1/2-1 pound of toffee is $5.20 and anything more than 1 pound is $10.95; that is priority shipping.


English Toffee-WITH SHIPPING





English Toffee-WITH SHIPPING





PRICES FOR LOCAL PICK UP (WITHOUT SHIPPING CHARGES)


English Toffee-LOCAL DELIVERY





**To view other fundraisers we have going on or to make a donation to my mom's caregiving expenses, please visit my fundraising page.

Tuesday, November 18, 2014

The D.E.A.N.A Foundation

A couple of months ago, I posted big news here on my blog. We have had a few really great board meetings now and are well on our way to getting this foundation established! I want to give you all a quick update on the progress we've made!

One of our first items of business was to name our Foundation. We wanted to choose a name that represented our mission while also paying tribute to the person who has inspired this foundation: my mom. We tossed around several ideas and the name we have elected is The D.E.A.N.A Foundation [The Dementia Expense And Nursing Assistance Foundation].

The purpose of this foundation is as described in our mission statement:

"Our mission at the Deana Foundation is to provide financial relief to middle class families affected by dementia. We understand the emotional and financial burden this disease places on families caring for their loved one. We strive to ease these burdens by providing emotional support, resources, and caregiving grants."


Establishing a foundation is not a small undertaking. This isn't an amateur idea that came to me in passing. I've spent many hours pondering and researching how to make this vision happen (as have the other board members). This is going to be a legit foundation and I hope to reach thousands, even millions, of people down the road. There are a lot of formalities in establishing a foundation (I won't bore you with all the details); I'm excited to say that we have completed the first big chunk, which is to write the foundation's Articles of Incorporation and by laws. I am forever grateful to our board member, Melissa, who has spent a lot of time figuring this part out. Because of her hard work, we were able to sign and mail in our Articles of Incorporation to the Secretary of State last week! This step approves our foundation name and establishes us as a non-profit charity. As soon as we hear back, we will be ready to file our tax exempt paperwork, get our taxpayer ID number and be ready to get this party started!!

Some other things we are working on include: a foundation logo, vision boards for our website, marketing and brainstorming ideas for our grand opening event. We still have a few seats open on the board, if anyone would like to serve with us! Living closeby is great but not necessary; in the future I would love to see this foundation reach across the country!

That's my update for now. I just want you all to know that things are moving along...it wasn't just an idea that has passed! It is very much happening. It's just a long process to get going. Please continue to share my blog on your social media sites and with those around you and help to get the word out! I am very hopeful that we will be able to make a difference in many lives through The D.E.A.N.A Foundation!