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!

Wednesday, November 12, 2014

No Way Out

For the past couple of months, mom has been trying to escape the house. She's pretty sneaky too. Some days she waits in the back of the house, sweater on and purse in hand, and then pops around the corner and makes a mad dash for the door before anyone can stop her. Some days she sneaks through the garage door and opens it up and runs out. She has even tried going through the backyard; she can't figure out the lock on the gate but she has actually gone so far as to try and hop the brick wall!!

We've always got to be two steps ahead of mom. After my dad leaves in the morning, he unplugs the garage door opener. The gates are locked; mom's only escape route now is the front door. What we've been doing is guarding the door; as soon as we see mom come down the hall, we park ourselves in front of the door and do not let her through. You can imagine how tedious that task can be...sitting in a chair in front of the door for sometimes hours on end! One day, she was giving my Tia an especially hard time about getting out and my poor Tia was very stressed out. My brother-in-law went over to help her and my mom body slammed him against the wall in an attempt to break free! Guarding the door was obviously a temporary solution as we brainstormed other options.

We thought about putting a lock on the top of the door on the inside. The problem with that would be if mom somehow figured it out; no doubt she'd lock out her caregivers. We attempted a childproof lock-the plastic circle kind that goes over the doorknob. My sister-in-law brought one over on her first day watching my mom. Mom hit that plastic child lock until it finally snapped off the doorknob!

My dad is a pretty smart guy. He came up with a good solution. Duh, why didn't I think of that? (Nevermind the rust on the screen door ;) )

Now, when a caregiver arrives, they have a key to lock themselves inside. Mom doesn't understand the concept of unlocking from the inside, so for now we can rest easy knowing that she can't escape outside without us. Let's hope she doesn't get too creative in finding another way out!

Thursday, November 6, 2014

What Matters Most

I absolutely love the holiday season. The changing seasons, the chill in the air, the scents of pumpkin and holiday spices, the feeling of gratitude and helping others in need...I love everything about this season-from October until January.

Now that Halloween and October birthdays are over, I decided to get focused on Christmas! I know...can't the turkey have his holiday? ;) I really want to get my Christmas shopping done before Thanksgiving so that I can sit back and truly enjoy all the holiday traditions and festivities that the season brings. I don't want to have to think about shopping after November! Yesterday, while my kids were at school and my youngest was at his preschool group, I decided to tackle some Christmas shopping. I love Christmas presents, and not for materialistic reasons. I really enjoy finding that "perfect" gift for the people I love. I love seeing their faces when they open up their gifts that I've carefully selected that I know they'll love. I love gifts because I love giving.

While driving to my shopping destinations yesterday, I was alone in my thoughts. It's a rare occasion that I drive anywhere alone; those quiet moments always cause me to pause and reflect. My thoughts quickly turned to my mom. Last year, we had a pretty good feeling that it was our last Christmas with mom knowing what the holiday was. Given that she hasn't been remembering any of our birthdays over the past few months, I am doubtful that she will have any clue about what the upcoming holidays represent. I was remembering the beautiful quilt I made her last year and how excited I was to give it to her. I was very proud of that perfect gift I had created for her. And then my thoughts turned to a day, not too long ago, when I was at mom's house. She was sitting on her bed in her usual silence, arms folded across her stomach. I tried to strike up a conversation with her and reached for the blanket that was folded up on dad's side of the bed. I spread the quilt across the two of us and pointed to some pictures of her grandkids.

"Remember this blanket I made for you last Christmas? Who are these people on here, mom. Do you remember?" I asked, pointing at the square with my son's face printed on.

Mom wouldn't meet my eyes nor would she look at the blanket. She seemed agitated that I was bothering her with incessant chatter.

"No, that goes there," she finally responded, grabbing the quilt from me and tossing it back to my dad's side of the bed.

As I reflected on this, driving in my car on my way to pick out those perfect gifts, I thought about all of the perfect gifts I have selected for my mom over the years. Though they were meaningful in the moment, they mean nothing to her now. They hold no value or significance to mom any longer. All of the material things that she owns in life- every gift she's received and everything she has worked so hard to buy for herself- no longer holds meaning for her (save it be her blow dryer, make up, and a few other daily objects that she uses). What makes it even harder is that not only do the "things" we've gotten her no longer matter, but even the memories of them are fading; the memory of why each of her belongings are significant.

As this realization hit me, my perspective changed just a little. I spend so much time thinking about getting the perfect gift and giving people "things" that will make them happy. At the end of the day, is that what really matters? I'm not saying that it's not important to me; I still love giving personal gifts to my loved ones and seeing that look of happiness when they open their gift. But thinking about my mom was a reminder to me to focus on what matters most: spending time and making memories with the people I love. I am excited to get those special gifts and by Thanksgiving, I'd like to have them all wrapped and ready to place under the Christmas tree so that I can devote the rest of my energy on making the season special for those around me. We can't take our material things with us when we die. My mom has already reached the point where those material things don't matter. Unfortunately even her memories are leaving her. But I believe that one day, all of those memories will be restored. Traditions, time spent with loved one, lifting those up around us, making memories...that is what matters the most!

Wednesday, October 29, 2014

Changing Mom

Right around the time my baby turned 3, pajama time became a nightmare. He became very obstinate about changing from his clothes into his pj's. There were some nights where I had to hold him down, straddling my legs around his while sitting him down on my lap, as I attempted to undress and redress with pajamas. By the time we had made the switch I was breathless and my heart was racing from the intense work out. You get the picture.

Now, picture this scenario with a grown adult. One of the struggles we have with my mom is that she doesn't change her clothes very often. Everyday, she puts on the same clothes as the day before. On occasion (maybe once a week),she will trade one outfit for another and throw her worn clothes into the laundry pile. You will notice in the pictures I post that most outfits look the same.

A few weeks ago, while I was over at mom's, she smelled very...fragrant. Foundation stained the neck of her blouse and when I leaned in closer to mom, I could smell that her clothes desperately needed to be wash. The tricky part was getting her to change. She doesn't comprehend anything I try to say to her, so I knew explaining that wasn't worth the effort. And there was no way I could change her by myself. Besides that, it feels like a violation to have to undress my grown up mom against her will. Still, something needed to be done.

Lucky for me, dad ended up coming home late that morning. We discussed the showering/clothes changing situation and I noted that mom's clothes really stunk. I'm sure it's not easy for my dad to have to take charge of mom, but he does really well at it. While I'm still nervous sometimes to go in and do things against her will, he just goes in and does it whether she likes it or not. I think she kind of looks at him like her father figure in some ways; she listens to him a little better. However...she was not understanding the concept of changing her clothes.

"Deana, we need to wash your clothes, they stink," dad said, a countless number of times. When mom was unresponsive to dad's prodding, dad sat beside her and started to take her shirt off.

"No, stop it, don't do that," mom said with a little smirk on her face. She glanced at me from the corner of her eyes with a mischevious look...like maybe she thought dad was trying to get frisky with her. Ha ha.

"No no, you can't do that, she can't see me," she remarked.

Despite mom's protests, dad successfully got mom's shirt off and then started to work on her jeans. Mom became even more stubborn.

"No, no!" she said, struggling but also still smirking.

"Deana, stand up," dad said, trying to get mom to stand to make it easier to slip off her pants. Of course, mom wouldn't budge. I figured I was going to have to step in and help dad.

"Here mom, stand up," I said. Together we pulled her off of the bed and held her in a standing position.

"No no, you shouldn't be doing that, no," mom continued.

"We need to change your clothes, mom," I said.

I held her up while dad scooted her jeans down past her hips. Mom quickly dropped herself down on the bed and I began to take off her shoes.

"No no, why are you doing that, stop it. Stop it!" Mom said, breaking out into a giggle while she swat at my hand. She laid down on the bed, eyeing us both suspiciously and giggling with protest. My dad and I started chuckling; as adamant as mom was that we leave her alone, her giggling and smirking made our chore a little more bearable.

We were able to successfully pull off mom's clothing and dad immediately took a load of her laundry into the washer, handing her a clean pair of clothes to put on. Needless to say, it is much easier to catch those dirty clothes at night when she takes them off then it is to struggle with her to change once she's already dressed! She still isn't happy when her clothes disappear into the washer (she lays them out right next to her bed so she can see them in the morning), but we do what we gotta do!

My son is 3 1/2 now and lucky for me, his phase didn't last too long. I'm happy to report that he's pretty easygoing these days about changing into his jammies. Unfortunately for my mom, the struggle has just begun.

Wednesday, October 22, 2014

UCLA Study: Reversing Alzheimer's

Here I am, your crazy health lady, here to share another important message with you!! A friend sent this link to me this morning and I have to admit, it made my morning. Partly because of this big "breakthrough" for treating/preventing Alzheimer's and related dementias, and partly because it proves I'm not crazy afterall...not totally, anyway ;)

Apparently, UCLA has been doing some studies and found that you can actually reverse memory issues (including Alzheimer's and related dementias) through-get this-diet and lifestyle!! There is still a lot of research and trials to be done, but they have documented success through studies with real people. This doesn't come as a huge surprise to me because I've read several other accounts of this. But I think for some people it helps to read it from an accredited university or medical research program rather than "some" doctor who had success and wrote a book.

I can't, in good conscience, NOT share this information with my readers. Make of it what you want. Personally, if I were experiencing memory loss or brain fog (which I have been through!!) or know someone who is dealing with this, I would definitely take it seriously and pass it on. You never know unless you try!


Friday, October 17, 2014

Let's Clear The Air

As expected, I received a little bit of backlash from my post yesterday. Though I expected it from this person, I feel a little disheartened by the criticism; but I have to remind myself that I began writing this blog for two reasons: 1. To share and express the journey we're on and write down the things that I feel which are difficult to verbalize and 2. To try to help other people on their journey as well. Some things are harder to open up and write about than others, but I feel like I am cheating my readers if I don't share it all. Who knows what post might affect whom.

Let me clear up some misunderstandings about my last post.

1. I am NOT declaring that homeopaths are or will be curing my mom. Do I think those things can help? Yes, and that is because of my own, personal experience with it. Do I think they are going to bring her back from dementia? No.

2. I am NOT declaring that it is solely the homeopaths that have improved mom's speech, or anything else for that matter. It has certainly occurred to me that taking her off of the meds she was on has helped to improve her speech. I simply stated the facts: we weaned her off her meds, supplemented with homeopaths, and saw very slight improvements in certain areas. Most other areas remain the same and have shown no improvement; I was only sharing what several of us have seen and trying to have some shred of optimism in this crappy hand we've been dealt.

3. This blog is about my mom but it is also about our journey, including mine. I feel that everything I share on here correlates to my mom and her dementia. There are certain events that have influenced the way I think and feel or evoked some sort of emotion that I share in a given post. There are things that I am learning along the way and I feel like that's okay to share. If you don't agree with my way of thinking, that's okay. I'm not declaring that I am a doctor or that I have all the answers. I am sharing our journey and each person can decide for themselves their takeaway from reading my blog.

4. I've been accused of turning my blog about dementia into a blog about my crazy health theories; aren't the two (health and dementia) related? I share my health experiences simply to send the message that lifestyle CAN play a factor in overall health, even dementia. I made some lifestyle changes and I've seen an improvement in my health, including focus/memory issues I was having!! I am not making any declarations of what has definitively brought about mom's changes; I'm just sharing my personal affirmation of how these things have helped me and my own personal belief of how it can help my mom, or rather, someone who is not as advanced in the disease as my mom. I can't tell you how many studies I've read that have found connections with lifestyle and dementia. If you don't believe it to be true, that's fine. And if my blog is intended to help other people, then why would I not want to share some of the knowledge I've acquired and try to prevent this disease from affecting more people? I don't claim to have the answers; I just want to share what I've learned so that maybe, just maybe, someone else can prevent it from happening. Does anybody really have the right answer?? If they did, we'd have a cure!

I apologize if any of my readers have felt misled or interpreted my post to mean that mom is on the mend; that is not the case. We all know what the outcome of this dreaded disease is.

With all of that to say, I hope you all will continue reading. Unless, of course, you are losing sleep at night over the things I post. In that case, I won't be offended to part ways ;)

Thursday, October 16, 2014

The Tiniest Victory

I used to think homeopathy was for a bunch of hippies. In my mind, medicine was the answer to ailments. If natural remedies worked, then why did our ancestors die of so many sicknesses? (On the other hand, I don't think our ancestors had many of the chronic illnesses we now see in our society). Since my mom's diagnosis, I've had a few friends approach me with the idea of using a naturopath doctor to help mom with some of her troubles. While I appreciated the gesture and concern, I admit that I kind of rolled my eyes. No way could a naturopath doctor help my mom in any way when the big wigs over at UCLA couldn't even figure it out!

I've mentioned briefly on a previous post that I was diagnosed last year with an autoimmune disease, called Hashimotos. It wasn't until I faced my own health issues that I began to understand that there are, in fact, natural ways to help your body to heal. This wasn't a conclusion I came upon quickly or easily; it was a long process...a process where in desperation I finally began to take my health matters into my own hands instead of fully depending on doctors to make me better. Through a lot of hard work which has included changing my diet and other lifestyle factors, I have been feeling so much improvement in my overall well being; I feel as though I've gained my life back.

Now, I'm not knocking medicine-let me make that clear. There is most certainly a time and place for medication. I am on medication for my thyroid and I know that my body needs that right now, but I do believe that medication is over used in today's society and medication alone is not the answer; it is only one piece of the puzzle. After nearly a year of no success with medication, that is when I researched and tried other methods to heal myself. One of the action steps I took, after many frustrating and unsuccessful visits to the doctor, was that I consulted a naturopath to help me. There's way too much information to relay on here, but the short part of the story is that the naturopath, along with lifestyle and diet changes have really improved my health. So much that my thyroid levels have finally stabilized and my enlarged thyroid has actually shrunk in the past 6 months!!

With all of the research and things I've learned over the past 6+ months, I really feel like there is so much more to mom's dementia. It's not just a genetic defect but I (personally) believe there are a number of factors that have contributed to it. I'm not an expert, I'm not a doctor. Maybe I'm way off base. But based on everything I've learned, I do think a "perfect storm" is what brought on mom's dementia. Certainly a genetic factor is present. Perhaps her heart condition and surgery played a role in it as well (which I most definitely believe). I do, however, think that certain diet and lifestyle changes could have helped her had we known more in the beginning. They say hindsight is 20/20. I know some people think I'm kooky for my theories; but then again, I've been doing the research.

So...how does my autoimmune issues relate to mom's dementia? I'm getting there. :)

My dad has been wanting to get my mom off her meds for a long time. They didn't seem to be doing her any good and if anything, they were harming her liver and causing even more side effects that have to be treated with yet another pill. I brought the idea of a naturopath to the table and dad was on board to try anything. I admit that deep down I was kind of hoping for some sort of magic cure, even though I knew better than to believe in that. Still, at the very least, we both felt that doing this might be able to eliminate the hard core meds that mom was taking.

Over the past two months, dad (working with both mom's doctor as well as the naturopath) has been decreasing mom's dosages of medicine and replacing them with homeopathic remedies. Mom is now officially off all of her pain meds, sleep meds, etc and guess what? Mom is NOT complaining of aches and pains. Mom has been sleeping better and has more energy (which may or may not be a good thing, ha ha). Most notably, though, is that mom's speech has improved. While I was with her on a Monday a few weeks ago, I was thinking that she seemed to be speaking a little more clearly. Not sure if it was just my imagination, I didn't say anything about it. Later that evening my sister remarked,

"Is it just me, or is mom's speech improving? It seems like I've been able to understand her a little better today."

This past weekend, my brother's family came out for a visit from Arizona. Before they left, my sister-in-law said,

"I've noticed that your mom's speech is a little better...I was able to understand a lot more of what she's saying. And Joe actually had somewhat of a conversation with her yesterday."

With so many setbacks and defeats with this disease, I feel like we've had just a tiny victory. It's too bad we didn't know to try some of these things before her dementia escalated to the point where it's at. But...I think that through it all, we are all learning and paving the way for ourselves to live a healthier life. Some things are out of our control, it's true. We don't know what the future will bring for any of us and who knows when (or if) a cure will ever be found. What we can do is educate ourselves now, be aware of symptoms and try to prevent from the get go with the proper lifestyle interventions. I know this post could undergo some scrutiny, but this is our journey, and this is my take away.