Halloween 2013

With each holiday that passes, we wonder if this is the last time mom will remember that particular holiday. She has lost memory of those smaller holidays: Memorial Day, Labor Day, even 4th of July. But as of last year, her memory was still intact for the “bigger” holidays: Halloween, Thanksgiving and Christmas. If I remember correctly, it did take some explaining to spark her memory about Halloween. But eventually, she figured out what we were talking about and remembered how we celebrate Halloween.

Saturday night, my parent’s church ward had their annual Halloween party and trunk-or-treat. Dad likes to have all the grandkids come along and be together for some Halloween fun. I got the kiddos (an myself) dressed up and headed over to my dad’s house, figuring we may as well ride over together. As I walked in the door, I asked dad if mom was going to come with us (knowing full well before I asked that she wouldn’t go).

“No, she doesn’t understand the concept of why we’re going to the church tonight. I tried explaining it; she says that she’s going to church tomorrow and she doesn’t know why we’re going tonight,” dad told me.

I knew it wouldn’t do any good to try and convince her, yet I was still determined to try. I went down the hallway into the room where I knew she was hiding; there she was, sitting at the computer.

“Mom, do you want to go with us to the Halloween party at the church?” I asked.

I explained to her what Halloween is. I pointed out that we dress up and wear costumes and say “trick-or-treat” to ask for candy. My sidekick, “Baby Jack-Jack”, walked in the room and I showed my mom his cool costume. Apparently, mom must think that I look like a superhero everyday because she was oblivious to our being dressed up, even when I pointed it out. The concept is gone.

“Your dad keeps talking to me about this but I don’t understand what you’re saying,” she said, giving me a blank look before returning to her card game on the computer.

Despite all of my attempts to explain Halloween, I couldn’t get mom to understand. I suppose it’s just one more thing to add to the list of the things she’s forgotten. Forgetting holidays is a big one. If she can’t remember Halloween, will she remember Thanksgiving or Christmas? When she forgets those, what will she forget next?

Mom the Mischief Maker

Last Friday, mom got into a little bit of trouble.

I got the phone call right after I had arrived at my husband’s work-I surprised him at the office for his birthday lunch date.

“Where are you at?” my dad asked. I knew right away what that meant.

“What trouble is mom getting into now?” I asked with a sigh.

Dad filled me in on the details of the past hour. Mom had a lady from church over “babysitting” her for the day. She called my dad after mom had revealed that she found some money and had planned to walk up to the store which, as we all know by now, means she is attempting to buy more medicine. Apparently mom ran out the front door, leaving her caregiver in the dust.

I apologized and told dad I was out (there’s no way I would make it in time even if I wanted to). I hung up the phone, wondering the same thing dad was: where the heck did mom come up with money?? Dad has gone to extra measures to make sure there is NOT money laying around for mom to get happy with. Yet somehow she found money and was off on her mission.

By the time the hubby and I arrived at our lunch location, I received another phone call from a private number. I answered the phone, knowing that somehow the call was related to mom. Yep. It was Mike from Stater Bros. [There are few cashiers at our local grocery store who are familiar with mom and our situation and have asked for my number to call me when mom wanders in alone. Mike is extra attentive, as his dad also suffers from FTD]. Mike let me know that mom had wandered in, alone, and was in the medication aisle. He asked what I wanted him to do and even went so far as to say he could refuse her the sale. But…that’s only if mom chose his check stand and I didn’t want her to create a big scene in front of everyone. I told him thank you for keeping tabs on her and that we’d confiscate the medicine when she got home.

I hung up and tried to focus on my hubby and enjoy our lunch together. Of course in the back of my mind I was worrying about what was going on with mom. A few minutes later, I got yet another call. This time it was my sister. Apparently, when I was unavailable, my dad called her to see if she could get the situation under control. Luckily, she works close by, was in-between clients and was able to go track mom down. When she arrived at the supermarket, she found mom’s caregiver-for-the-day standing outside the door (I guess she was afraid of confrontation with mom? Or she didn’t know how to handle the situation?) Christina (my sister) walked inside just as mom was approaching the check-out counter, medicine in hand. She walked up to mom, who I am sure gave her a glare as she said something like,

“Don’t you say anything to your dad about me buying this.”

Christina stood patiently by as mom proceeded to pay for her medicine. Mom handed the cashier her dollar bills and the cashier remarked,

“Wow, these are some old dollar bills. Where did you come across these?”

My sister glanced over to see an assortment of silver certificate $1 bills, $2 bills and some old coins.

Mystery solved. That’s where mom got the money from: she had found dad’s old coin/money collection.

“I’ll just take those and pay for it with my debit card,” Christina said, as she retrieved the old money back from the cashier. Mom was insistent that my sister return her money, but was soon quieted when she realized that Christina would pay for her medication. As soon as she got what she wanted, she was out the door. Christina tried to convince her to take a ride home, but mom was insistent on walking. So my sister followed behind her in her car and made sure she got home safely. She followed mom into her bedroom and quietly observed her as she hid her loot.

One more disaster averted…at some point our luck is going to run out! At this stage in the game, we are looking into full-time, professional care for mom. :(

Some Days a Girl Just Needs Her Mom

Some days a girl just needs her mom. Even when that girl is a grown woman.

Some days a girl just needs her mom.

Like when the neighbor delivers an entire crate of plums on her doorstep; mom would know just what to do with them. Every summer, mom made homemade plum jam out of grandma’s homegrown plums-using grandma’s perfected recipe. Why didn’t I think to get that recipe when mom still knew what plum jam was? Why didn’t I pay more attention to the details while I was helping her as a young girl?

Some days a girl just needs her mom.

Like when her kids begin to test the lines; when her teenage girls detest her and all her rules. The thing grand thing about a grandma is that she is seasoned. She has been through the tests and the rebellions and the attitudes and the challenges of her own children and passes down her wisdom to them when they’ve grown. Mom was so smart. She studied child development. In my early mothering years (before dementia), she always knew the right thing to say, the right way to handle a situation.

Some days a girl just needs her mom.

Like when she wants to pick up the phone to share good news, to ask a question or just to shoot the breeze. This is probably what I miss most. Having a mom to talk to.

I know I shouldn’t complain. I had twenty-something years with my mom before dementia began to take over. Some women never even had that long. I am not the first woman to lose her mom at a young age and I am certainly not the last. Some days I feel strong, resolved; I feel like I can do this! I can take care of myself, I can figure out this parenting thing and I’m stronger for not having to rely on anyone.

And other days I feel lost. How do I navigate without my mom?

Some days a girl just needs her mom.

Today is just one of those days.

The Walk

This last Saturday we participated in the Walk to End Alzheimer’s for the second year in a row. My amazing Aunt and her husband came down from San Jose once again to join us. My other Aunt from last year also came as did my sister-in-law and her family and a friend and her mom. We learned a few things from last year and worked hard to make this year even better than the last.

To start with, we figured out that we could make our own team shirts. We wanted Team Dee to stand out, so I created these t-shirts and designed my mom’s face into the purple awareness ribbon. I had originally wanted to get them professionally made, but I ran out of time. I was pleased with how my homemade shirts turned out though.

 

Also, I wasn’t sure last year about how strenuous the actual walk was. So I hadn’t planned on having the kids join us (although my husband ended up bringing them). This year, we planned on all of the grandkids (minus one) participating and explained to them what we were doing and why we were walking. I love that we involved them and that they were able to learn the importance of supporting their family. My nephew, Jeremy, led us in a team spirit chant throughout our walk and all the kids had a lot of fun with that (especially since we bought mega phones to yell through).

We also took note last year that there were awards for the most spirited team as well as the best dressed team. We tried hard to be the top earning family team, but that dang Pauline’s Angels team is hard to beat!! ;) I’ve told you before, we’re a competitive family. So we wanted to win something. We knew we needed to stand out. In case the neon shirts weren’t enough, we decided to accent our uniform with the dementia color: purple. We had purple jewelry, purple wigs, purple hair spray paint and accessories…and we sure did draw attention! Everyone was stopping us to take our pictures and our efforts paid off. We won the award for the Best Dressed Team. When we went up front to receive our award (and get our picture taken), my daughter asked me if we were famous. Ha ha. Gotta love kids!

 

I am very proud of what Team Dee accomplished this year. We finished with over $4,000 in donations which put us in the #6 spot for the highest earning team. My dad was ranked at #9, my Aunt at #10 and myself at #13 as the highest individual fundraisers. Out of about 1,000 who were there walking, I would say that is quite an accomplishment!!

I know many people do not like donating to organizations such as these; they feel that the individuals affected never see a dime of the money. To each his own; however, I’d like to share a few facts about the Alzheimer’s Association that you may not know and which have influenced our decision to walk for them.

1. The Alzheimer’s Association provides resources for families who are affected by this disease. Whenever you need something, you can call the center and they can direct you where you need to go. I can’t even begin to list all of the resources that one may need in order navigate through this disease. And they help you get through it all. I would bet that most people affected with dementia have made a phone call to the Alzheimer’s Association at some point in time; if they haven’t then it’s only because they don’t know about it! Your donations help to fund this.

2. Along with #1, the Alzheimer’s Association has a respite program. That means they are allotted a certain amount of money (depending on how much they’ve earned that year) that they put aside to assist families with respite care. Earlier this year, we received some of that funding and had a temporary caregiver with mom. While I was at the walk, I ran into the case worker who helped us get on that program. She recognized me right away (wig and all!) and asked how my mom was doing. I gave her an update and told her that we were looking into full-time care. She let me know that there were still some funds available and that they may be able to help us again. It’s not anything full-time, but any little bit helps!! Though the help is there for everyone, I feel that we are “on their radar” more because of the donations we’ve raised for them. I always tell my kids: “You get what you give!” I feel a little better about getting if I am giving!! It is your donations that help to fund this and make this possible.

3. I’ve been reading a lot of articles lately on how scientists feel they might be close to a break through on Alzheimer’s treatments. In fact, I posted a link last week on an experimental drug used on rats that was successful in treating Alzheimer’s (it has yet to be tested on humans). If we can find treatment for Alzheimer’s (which will affect millions), it opens the door for other dementias as well. All of this takes funding. Your donations help to make this possible.

Though it can be frustrating at times to raise the money and find the sponsors (I hate asking people for money), I feel good about being proactive and helping in the cause. Most of all, it feels good to be united in love and support for my mom. During opening ceremonies, there was a “flower ceremony”. We had all written on different colored flowers to symbolize the person we were walking for. As we all stood together, holding our flowers for my mom and as I looked around to see so many others rally in support for their loved ones, my eyes filled with tears. It was a touching moment.

I want to give a BIG thank you to everyone who joined or donated to Team Dee this year. You have no idea how much your love and support means to us. It is what helps us get through every day. I would love to see even more FAMILY and even friends join Team Dee next year ;)

Here are some more fun pictures for you to enjoy!!

Celebrating My Birthday With Mom

Yesterday was my 32nd birthday. I started my day like every other Monday: at my mom’s house. At first, mom seemed unaware of the date (she had given me my birthday card over the weekend…she just couldn’t wait!) When I prompted her, she remembered it was my birthday and reminisced about how good she did when she had two babies (I’m a twin).

My husband had arranged for my family to all go out to dinner later that evening and celebrate together. I wasn’t sure if dad had mentioned it to mom, so I decided to give her fair warning and ask her if she’d like to come. She was very happy to go out to dinner.

“That would be so good, yeah. And ask your dad too and it would be good to go do that for your birthday even though Joe won’t be here but it would be so good. Yeah. Where are we going? To that Tyler Mall place? Is that where we’re going? That would so good too, yeah…” she rambled, with a sparkle in her eye.

I tried, countless times, to explain to her that we were going to The Old Spaghetti Factory and that we’d be meeting at 5:00 to leave. Somehow, she had it in her mind that we were leaving at 4:30 to go to Miguels, which is at the Tyler Mall. It’s too exhausting to write out the entire events of the afternoon-the phone calls from mom nagging about leaving and asking me to please call my dad to let him know to be home by 4:30- but suffice it to say that she was very unhappy when 4:30 rolled around and we hadn’t left yet. She nagged and fussed and threw a stink until we loaded into the car to leave. Then, she was flustered when we drove the wrong way to the mall and even more upset when we pulled up to Spaghetti Factory.

“I don’t know why you changed it, dammit!”

The dining experience was the usual with mom: mom, giving her written list of what she wanted to eat to the waiter; mom calling the waiter from across the restaurant, unhappy that it was taking so long to get her food; mom, asking my sister to take her home before the check had arrived.

I’ve learned not to be bothered by mom’s behavior. It can be a little annoying and even embarrassing sometimes…but it’s nothing she can help. I’ve learned to find the humor in our situation, like when she sang Happy Birthday to me in full volume as soon as we sat down at the table. I can even chuckle at her little tantrums. If I don’t laugh, I’d cry, so it’s better to just laugh it off ;)

As tiring as it can sometimes be to take mom out, I am glad that she was there. We try to make the best of it and have fun with her.

Thank you mom, for giving me life and for being such a great mother to me over the years.

 

Problem Solving

I think you could say I’ve always been a bit of an entrepreneur. My parents taught me early on to work hard for the things I wanted in life. Even at 7 years old, I was putting my creativity and resourcefulness to good use and always had some kind of little “business venture” in the works. One summer, my cousin came and stayed at our house for a good amount of time and together we sewed hair scrunchies and sold them door-to-door in the neighborhood. My brother, sister and I would often knock on neighbor’s doors and offer them a car wash for a small fee. My friends and I used to make necklaces out of paper mache and Potpourri from flowers in our gardens which we sold. You could often find us out on the lawn, used toys and crafts scattered on top of blankets priced with tags to sell to the other neighborhood kids. I remember one time, the ice cream man stopped by one of our yard sales and I traded some of my cereal box prizes with him for ice cream.

This pattern has followed me throughout my life: as a teenager trying to earn money for my high school choir tours and driving; as a starving college student working to earn a couple extra bucks; even as a stay-at-mom working for some extra Christmas cash. My parents taught us to never look for hand-outs; HARD WORK is how you get by and help yourself and those around you.

Lately, the money issue has been keeping me up at night; not money for myself or for my immediate family. I’ve been really worried about how we will afford the professional care that mom needs. I know the time is coming that mom is going to need constant supervision. Truthfully, that time is already here. We are doing our best to have mom supervised while dad is at work. We work together as best we can, as a family, to ensure mom is safe. Right now, mom’s care is all on a volunteer basis and it only covers half of the day. We are never really sure how long our dear volunteers will be able to handle mom. The time has come that we are exploring all of our options to get mom professional care throughout the entire day while my dad is at work.

The problem? Cost. Maybe it’s not my problem to worry about. But how can I help it? My dad has always been there to help us, how can I not now worry about him? I worry about how my dad is going to be able to afford a full-time caregiver. Like I said, my dad values hard work and is NOT afraid to work. He is one of the hardest workers I know. But the fact of the matter is that professional care costs more than the average middle-class family can afford. Yet dad makes “too much” money to qualify for any assistance. He is too young to retire to take care of mom full-time. Most professional companies charge around $20 an hour for in-home care. Multiply that by 40 hours a week and that equates to $3,200 a month for professional help. To complicate it even more, dad is self-employed which means his income fluctuates month to month. Finding a solution is trickier than it seems.

There are options. We can exhaust our volunteer resources. We could hire someone privately for less. We could look into a live-in caregiver and exchange living costs for care. All of these options have pros and cons to them. One attorney told my dad that our cheapest option is to put her into a home. It could eventually get to that point, but as of right now that is not something we are ready to do. Ideally, I know my dad would like to keep mom at home as long as possible (even to the end)…that will only be possible with a lot of in-home care. And consequently, a lot of money.

I worry about the financial devastation this will bring to my dad. The emotional devastation is hard enough to deal with. My dad has always been one of the most hard-working men I’ve ever known. He has always been there to help others in need and is a very generous person. I know he would never let his children go without. And so I feel that we cannot let dad go without.

Like I said, I am a worrier. Luckily, I am also a problem solver.

It’s impossible for myself, or my two other siblings, to come up with this amount of money from our household budget. We each have our own families to take care of and support. We do not want hand-outs. I, like my dad, value working for the things we have in life. Even care for my mom.

I am putting my entrepreneur skills to good use. I’ve put my head together with my siblings and we have come up with a plan of attack. We are not going to let dementia defeat us!!!

Every month, we will be doing some sort of a fundraiser. First and foremost, I want you all to know that the purpose in this is not to be an annoying salesperson!!! If you like what you see, great! If not, scroll down and no hard feelings ;) I am not going to pester anyone to buy anything. What I will do, is post (on my blog as well as my facebook page) every month what we are offering for the month. I have created a tab at the top of my page specifically for fundraising. You can click on that tab each month to see what we are offering. We have some great ideas lined up.

Most of the money earned will go directly to my mom’s care fund (which I have already set up). I say most because I want to think outside of our family a little bit and benefit others as well. For that purpose, we will donate 10% of every penny raised to the AFTD (Association for Frontotemporal Degeneration). Like the Alzheimer’s Association, the AFTD helps provide resources and research for dementia; unlike the Alzheimer’s Association, this organization specifically helps those afflicted with FTD (which is the category mom’s dementia falls under).

Also, I like to have a little fun. :) So, for every item you purchase, your name will go in a drawing for a chance to win that particular fundraising item at the end of the month. If you share my post on your facebook page, you will also have your name written on a ticket for the drawing…even if you don’t purchase anything! Sound like fun? :)

Our first fundraiser should be up and running by the end of this week and will go through the whole month of October. You can click on this link to get you there, or you can click on the tab at the top of my page, entitled “fundraising”.

Thank you all for your love, encouragement and support!!