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.

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.

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

1/2 pound $8.50 USD 1 pound $17.00 USD

English Toffee-WITH SHIPPING

1 1/2 pounds $25.50 USD 2 pounds $34.00 USD 3 pounds $51.00 USD

PRICES FOR LOCAL PICK UP (WITHOUT SHIPPING CHARGES)

English Toffee-LOCAL DELIVERY

1/2 pound $8.50 USD 1 pound $17.00 USD 1 1/2 pounds $25.50 USD 2 pounds $34.00 USD 3 pounds $51.00 USD

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

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!

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!

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!

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.

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!

READ THE ARTICLE OR WATCH THE NEWSCLIP HERE.

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 ;)

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.

Walk To End Alzheimer's 2014

This past weekend was the annual Walk To End Alzheimer's in our area. It is our 3rd year participating as Team Dee. I was really looking forward to this year, as it was the first year that all 3 of us kids participated together in the walk. All the grandkids were present (except for the ones away at school) and for me, walking together in this cause helped me to feel the love and unity for my mom. Maybe it seems silly...my brother isn't quite so sentimental. But I feel like it was a great show of support to join in this together. I'm so glad that everyone could make it together.

We also had one of mom's siblings there this year which was awesome. Our group is growing each year!

This is the first year that Maurina (my oldest daughter) wasn't able to attend. We missed her being there but I mailed her a shirt and she wore it proudly on the day of the walk! She was with us in spirit :)

My dad, Aunt and I were returning champions and we wore our medals with pride.

My friend, Mickelle, joined our team last year and returned again this year. She graduated high school with my sister; they were freshmen when I was a senior. All of 3 of us sang in our high school's madrigals choir. Anyway, the 3 of us were given the opportunity to sing The National Anthem at the opening ceremonies of the walk. It was an honor to be able to sing and fun to get up and perform again. I can't figure out how to post it here on my blog...maybe I'll post it on my facebook page for those who really want to see it ;) Here are some pictures though.

Of course our team won the award for the Most Spirited Team at the walk. Was there any question? Ha ha.

And here are a few more fun pictures.

I just want to say thank you to everyone who has supported us this year. Thank you to all of Team Dee for making it so much fun. My Aunt Peggy, Aunt Sharon and Uncle David, who have joined me all 3 years as well as my sister-in-law Amber and her family. This year my Aunt Claudia and her husband came as well as my mother-in-law. And of course Mickelle and her mom, Rosemarie, and my siblings. And thank you to everyone who donated to this cause that is so near and dear to our hearts. What a great show of support we have each year!

Happy Birthday To Me

This past Tuesday was my birthday. I suspected that my mom wouldn't remember the date. Unfortunately, my suspicions were right on.

Apparently, mom walked dad up to the Dollar Tree over the weekend to buy some birthday cards for people she thought she had missed (she stocked up on cards at the beginning of the year). I was one of those people, although she seems to have no clue when my birthday even is! While I was over there on Monday, she asked me to show her what day it was on the calendar. I pointed to October 6th and said (in my preschool teacher voice),

"Today is Monday, October 6th. Tomorrow is Tuesday, October 7th. Do you know what special day tomorrow is?"

Despite several promptings, mom couldn't tell me what was so special about the following day. I knew better than to be hurt; I was fully expecting it. On Tuesday, dad tried to tell her it was my and my twin's birthday with no response from mom. The concept, like most others, is gone. My birthday came and went and while it was a wonderful day and I was spoiled by friends, family and my wonderful hubby, my mom had forgotten about the first child she welcomed into the world. Such is life with dementia.

Not to leave you totally depressed, here's a picture to show you that I really did have a nice day. Of course I will always miss my mom, and it's my first birthday without her. I'm really thankful for all the people who took the time to make it special for me. It was a great distraction ;)

I was reminisicing and trying to remember my birthday last year. I remember suspecting it could be the last that I'd have mom aware it was my day. I found this post about my last birthday with mom. What a difference a year makes!

New Caregivers...Take Two!

The past couple of weeks have been somewhat of a whirlwind. Quite frankly, I'm a bit tired and ready for the weekend!! We started out last week with mom's sudden spurt of energy, and she hasn't calmed down much since. Because of our worries about mom getting out of the house, we've had to make sure someone is there with her all the time, which has presented some difficulty for us because up until now we felt like mom was okay by herself in the afternoons (her feet were usually only happy in the morning). We only had caregivers lined up for the mornings and even then, my Aunt and Uncle were on vacation which left their time slot uncovered. We decided to take the opportunity, while they were out of town, to try out a new caregiver during his time slot (more about that in a minute). After last Monday, it became apparent that we were going to need a lot more help than we had lined up. Fortunately, between friends from church, family, my sister and myself we've been able to keep an eye on mom the entire day. It's been a lot of work, but we made it through and we finally have a game plan from here on out!

I told you that we tried out a new caregiver while my Uncle was out. I had put in several calls over the past month for potential caregivers and finally found someone who was available when we needed her. Unfortunately, that arrangement didn't work out after all. When I initially called this caregiver, I thought she understood that I was looking for a permanent caregiver. She agreed to come and was fine with the days/hours, but after day two it came out (in a round-about sort of way) that she really wasn't looking for anything permanent (though she is willing to come when we're in a pinch and need an extra hand). So....after I made up an entirely new caregiving schedule, I crumpled up my sheet and went back to the drawing board. We met with a couple of potentials, worked out all the kinks and several headaches later I FINALLY have a weekly schedule that covers mom throughout the entire day while dad is away at work. We are still using some family and friends as volunteers (bless you all!!) but have hired 2 caregivers to come in part time to start taking on some of the load. It's a breath of fresh air to know that we have people lined up now for those days when family/friends might have other plans and we need a sub. As mom's disease progresses, as our volunteers become burned out, and as budget allows, we can start to replace more of the volunteer time with the caregiver time.

It's been an adventure! I am so thankful for all the friends and family who have helped us in all of this and who have been patient while I work out all the kinks in the schedule.

Severe Showers

Hygeine often becomes an issue in the later stages of dementia. Fortunately for us, mom has been rigid in her showering/hygiene routine. She hasn't needed assistance or supervision in managing her bathing; she showers every morning-or so we thought.

A few months ago, mom started referring to certain days as "severe shower" days. We interpreted "severe showers" to mean that those were days she washed her hair versus other days when she put on a shower cap. Her mention of severe shower days became less frequent, but the blow dryer was still being heard in her bedroom every morning. Why would she need to blow dry her hair if she wasn't washing it? We figured all was well in the showering department.

Through a series of events, we came to discover exactly what "severe showers" meant. First, a disclaimer: I don't post this to embarrass my dear mom. By now, you should all know that the things I write about are NOT my mom, but a disease that has taken over her body and mind. I share this only to help others to understand the complications of dementia and to prepare those who are behind us in their journey. I just wanted to make that clear. Back to the severe showers...after we took the blow dryer away, as my aunt checked in on my mom that week, she noticed that the shower stall was dry. It seemed that mom didn't know what to do in her routine without her blow dryer. For the entire week following her blow dryer confiscation, the shower stall remained dry. After brainstorming with my dad, he decided he would disable the hot wire in the blow dryer so that mom could have her blow dryer (and routine) back without the risk of harming herself. The morning after he did that, I went over to check in on mom. I heard the blow dryer going; success! Our plan had worked...or did it?

I decided to peek in on the shower stall, just to make sure it was wet, and to my surprise, it was dry apart from a small bit of water directly under the faucet. There's no way she could have taken a severe shower with the majority of the shower stall dry!

Upon further observation, we have learned that mom is washing her face and her hair in the sink every morning (hence, why we still hear the blow dryer going everyday). As for the rest of her body...she is sponge bathing in the shower stall but only takes severe showers once in a while. It's not clear how long she's been doing this or how long she'd gone without a shower. But she's been complaning of some discomfort in certain areas of her body, which is likely due to the lack of proper cleaning so my guess is that this has probably been going on for a couple of months now. Needless to say, it is more responsiblity on my dad as he now has to ensure that she gets showered at least a few times a week. He's been waiting for her to get undressed into her pajamas at night and takes that opportunity to push her (not harshly, of course) into the shower. She's needed a few promptings on what to do while in the shower, but the job gets done without dad having to do more than put her in...for now.

The Return of Happy Feet

This week has been especially rough with mom. She suddenly has bounds of energy and her happy feet have gotten even happier. She used to only try to go out walking in the mornings (walking to the store, her sister's house, etc) but this week it has been an all day ordeal. And even after she's gone out once already in the day, she is anxious to get out again in the afternoon (once a day used to be her limit). I have my theory as to why. I'll share that in my next post.

On Monday, I became very nervous when I arrived at mom's house and found her putting on her bra; that is the sure sign that she is ready to get out of the house. She informed me that she was waiting until 11:00 and then she would go get her exercise. I don't have a problem keeping up with her, but I had a busy three-year-old to drag along with me and I wasn't sure I could wrangle both of them. I made a couple of phone calls (for back up) with no luck and then plopped down on the couch, trying to figure out my game plan. It was my lucky day. Just before 11, dad pulled up to the house; apparently he was done working early. I breathed a sigh of relief and warned my dad that mom was planning her escape. I wasn't sure where she planned on going, as she had no money that I knew of, but she had mentioned the name "Marty" in her mumblings to me earlier. Marty is a family friend from church, who lives in the next neighborhood up. I was pretty certain that mom wouldn't be able to remember which house was hers.

Well...to make a really long story short, mom tried leaving the house several times that day. Dad hid her purse and coat to prevent her from leaving, and though she was pretty angry about it and frantically searching for her belongings, she ultimately decided she didn't need those things where she was going. She stood in the living room, looking out the window, the wheels in her head obviously turning. In a flash, mom darted out the front door and was sprinting up the street. My dad hopped in his truck and drove alongside her as she tried to navigate her way to Marty's house. At some point, she made some wrong turns and when dad knew that she wasn't going to give up, he steered her in the right direction. Upon arrival at Marty's house, mom marched right in the door without even so much as a knock. Fortunately, nobody was home (either that or they were hiding in the back room, lol) but dad was not amused that she was walking into someone's house uninvited. Can you imagine if he hadn't been with her to show her the right house??

Once dad returned home with mom, she ate her lunch and took a nap. When she got up from her nap, she was at it again. She sat at her computer games for a couple of minutes here and there but was distracted with ideas of more grand adventures outside the house. My dad blocked the front door several times, but as soon as his back was turned, she was out the door again. This time we hopped in my van and drove together. As I pulled over to the curbside a few feet in front of mom, dad quickly moved around the car (while I opened the back sliding door and set the child locks) and pulled her into the van. She struggled and was half-upset, half-giggly that dad was abducting her and seat-belting her down. She attempted to open the door but she was no match for my child locks. It's a good thing the neighbors know us or we may have been facing kidnapping charges ;)

My dad and I had an errand to run together after that last incident, and my sister came to the house to "mommysit". In the two hours that we were gone, Christina spent most of that time guarding the front door and thwarting mom's efforts of getting away.

That was the start of the week...and just about every day since. I'm really not too sure what transpired today, since I left out of town for a wedding. But for the past 3 days we've been chasing down mom. On Tuesday, we had a new caregiver at the house who didn't notice mom escape through the garage door. I got a call from the manager at the grocery store informing me that mom was up there, alone, ripping open boxes of Sleep Aid medicine. Apparently she found a stash of my dads change and it was just enough to buy her a bottle of pills. Later that afternoon, I went to check on her after I picked up my kids from school (we had nobody else to cover the afternoon) and I found the front door slightly ajar and the house empty. Thankfully, the Avon lady/mom's friend found her and brought her back home (she was trying to track her down for more eyeliner). Yesterday she took an escape to nowhere while that same friend (Avon lady) sat at the house with her. They ended up taking a walk around the block.

So, after an exhausting week, we have been working diligently on refiguring her caregiving situation. It seemed to be working to only have a caregiver scheduled in the morning but she obviously needs supervision 24/7 now. We have some great ladies from church who have been coming over and helping out, along with some family members, but we still have a lot of time unaccounted for. We are in the process of hiring some other caregivers to fill in the gaps and should have that all straightened out by next week. In the meantime, my dad has his hands full!!

Got make-up?

Mom is becoming somewhat of a hoarder. If you are a regular reader then you have probably read my posts about her addiction to Bath & Body Works. Her hoarding doesn't stop at Bath & Body Works products. If she doesn't have at least 2 gallons of milk in the fridge or 3 full jars of jelly on hand or 3 loaves of bread on the counter, she doesn't have enough. Her make-up in another problem.

For days, mom has been hounding dad to take her to buy more make-up. While I was at her house yesterday, dad came home (I'll share all of yesterday's adventures in another post) and dad asked me if I could help him organize her make-up drawer, since I am the "master organizer" of the family. As he started pulling her make-up out of her drawer, I started chuckling. I just couldn't pass up the opportunity to capture this on camera. Do you think she needs more make-up??

She had at least a dozen mascaras (not counting the ones we tossed), almost that many foundations, probably close to 3 dozen eyeshadows and just as many lip products. I lost track of how many eye sponges and brushes she had. When all of the contents of her drawer were scattered out onto the counter, I gave her drawer a good wipe down; it was covered in broken bits of eyeshadow and loose face powder. I washed off each of her make-up items, organized them back in the drawer, and tossed a lot of empty tubes and broken packages. This was the end result.

I'm not sure how long it will stay this neat and organized. But one thing is for sure: if the world went mad tomorrow and make-up was no longer available, mom would have her supply to last a lifetime...and then some!!

BIG NEWS!!!

Yesterday I teased you all with a post about my brilliant, crazy idea. I gave you a little background and foreshadowing and then I left you hanging until today. I thought it was a little much to write all in one post. And I also wanted you all to be as excited as I am about it.

I can't quite explain it, but ever since my mom's diagnosis I've had this prompting to be proactive in the dementia community. I think I've shared one experience before, where I had this distinct thought that I could either let this trial overcome me or I could try to learn something from all of this and do something positive in spite of it. Little by little, I've become proactive and involved in the dementia community; from my blogs to joining the Walk to End Alzheimer's. But I still feel like there's something more I could (or should) be doing to help families affected by this cruel disease.

I've been sitting on this idea for more than a year now. I made mention of it earlier this year to my sister, Christina. Though she liked the idea, I held myself back from going forward with it due to my doubts and fears of failure. I had those same doubts about writing this blog. I remember when I published by first post; my stomach was a ball of knots. I didn't know how people would receive my blog, of my sharing such a difficult and personal journey. I remembering telling myself it was mostly for me and my family anyway-to keep everyone up to speed; nobody else would care what I had to say. Two years later, with nearly 55,000 blog views, I get emails from people around the world thanking me for sharing our story. I never would've guessed I could reach so many people. And to think I almost didn't go through with it. I don't want that fear of failure to hold me back from potentially accomplishing a great work.

And so, it is with much excitement (and fear) that I announce to you all my plans to move forward with establishing a foundation in my mother's name; afterall, it is she who has inspired me and prompted me to do this work (the official name is still to be determined). This foundation will be unique in the dementia community because the target is not to raise money for research and a cure. Rather, this foundation will be established specifically to help families like ours, who are stuck in the middle class with no means or support to care for their loved ones. Through sponsors and fundraisers, I would like to issue caregiving grants to those people who have limited options on the table to care for their loved one. We know the heartbreak and the stress that caregiving can bring to a family; particularly when a loved one is hit at a young age. I want to help ease that burden for others who are struggling and give them options for care that they can feel confident about. There are a lot of details to iron out, but I will post all the details as they come. I estimate that to really get this established, it could take a good year to get going. I will keep you all updated in the process!

It is going to be a lot of work, and I know a lot of people may think I'm crazy. This is very much in it's infancy; but I have done a lot of research and know the steps I need to take to get started. This wasn't an overnight decision; I've been doing my homework. I have my first 2 board members: Melissa Ballantyne (a family friend, helping on the accounting/financial end) and Christina Avila (my sister). Both ladies have experience with setting up non-profit organizations (which is how this foundation will be set up) and I'm pleased to have them on my board. We are looking for a few others to join us as well. This is partly why I am coming out with this announcement now rather than once it is formally established; if anyone out there reading this post is interested in joining the board or helping in any other way, please contact me. I'm especially interested in people with experience in marketing, fundraising, etc. Please keep in mind, however, that it is all volunteer based at this point.

I am now asking for one favor from each and every one of my readers: SPREAD THE WORD!! Tell your neighbors, tell your friends and family, tell your Facebook community and share this post!! You never know who could be out there, silently struggling and aching for help. And you never know who might be out there who can assist in this worthy cause. In order for this idea to expand, I need to get the word out! Be watching my page (you can follow me on Facebook if you aren't already); I'll be doing some fun things to encourage my readers to get the word out.

Thank you all for your continued love and support throughout our dementia journey. Thank you to those who have sent me emails encouraging me and helping me to feel like I'm not alone. I'm looking forward to giving back to my dementia community!!

Rest For The Weary

We've known for a while now that the time has come to find outside help for mom. Some of you might ask why we haven't done that yet; after all, I've been setting aside money from fundraisers for the past year and talking about it even longer. Let me break this down for you.

Average In-Home Caregiving Company = $20 an hour (average)
x's
40 hours a week (that's just the minimum)
x's 4 days a week
=
$3,200 per month

Even with the fundraisers I've done, I don't even have enough money saved to pay for one month of caregiving.

Frequently asked question: Isn't there some kind of assistance that will help pay for an in-home caregiver?

Yes, IF you are low income and IF you have no assets (which includes a house).

If you are well-off, you can afford to pay for a nice company to come and care for your loved one.

But, if you are stuck in the middle class, there is no help!!

Story of our life. I could write an entire blog just on this topic, but I'll spare you the politics. The fact of the matter is this: if you are an average, middle class family, there is no help. You have to have nothing to get anything in our society. The most we can hope for is to find a facility that will accept mom's social security and disability (which is minimal) as payment to LIVE in their facility. And even then, what will the quality of that facility be? If we want something nice, we're gonna have to pay for it. If we want to keep her at home, there is no help financially for the middle class. It's been a huge source of frustration for me, and I'm sure even more so for my dad as he has the stress and heartache of how to care for his sweetheart and keep her happy at home as long as possible. I can't tell you how many times I've laid awake at night contemplating the issue; it sounds dramatic, I know. But until you've been in this situation, it's hard to know the struggle and the heartache it brings.

I know our family is not alone. There are thousands, perhaps millions, who face this same dilemma. I have no idea how they do it. Oftentimes people have to give up the things they've worked hard for their entire lives (houses, cars, etc) in order to obtain proper care. I've met people who have had to sell all they have and move out of state just to make it work. This is tragic. Why can't more be done to help these people? Why can't the people who have worked hard to make their way in life be rewarded just the same as those who have struggled? It seems an injustice to me.

This issue has weighed heavily on my mind for quite some time now. And then it came to me: I had (what I would consider) a brilliant idea. But every brilliant idea is also a little bit crazy, right? For those who know me, you know how much I HATE to fail. Too many times, we let our fear of failure hold us back from potentially accomplishing great things. If we let that fear hold us back, we can miss out on opportunities that can not only have a huge impact on our lives, but on the lives of those around us as well. And so, after months and months of deliberation, I've decided that I am ready to move forward with my crazy, brilliant idea. And I'm going to tell you ALL about it tomorrow!!! Stay tuned!!!

The Note

Mom's latest "thing" is leaving notes on the door, attached with lotion, to let her caregiver-of-the-day know to leave her alone. One lady from church wasn't wise to mom's ways yet when she came the other day and she went back home after finding mom's note on the front door. Word to those caring for mom who may be reading this post: ignore the notes.

While I was in Idaho, my sister texted me a picture of this note that she woke up to find on mom's bedroom door.

Interpretation: "Don't come in now you can't see me naked and Plain Jane."

Dad and I was laughed out loud when we read the note.

This morning, when I arrived at mom's house, I found a similar note on mom's door. Except this time she "lotioned" it the wrong way and the writing side was sticking to the door. I would've taken a picture of it because it made me giggle, but I forgot my phone at home today! I'm sure you can imagine ;)

You may notice that there are some misspellings in her words. I've noticed lately that she has been misspelling words and names of people (even her grandchildren). If you know my mom at all, you know that this is another down slide. Mom was always proud of her Spelling Bee status. If fact, her name hung on a Spelling Bee Champion Plaque at the middle school for years; she was very proud of that. I'm not really sure if she can still read. I think she may be at the point where she can read and write what she wants only.

It's Almost Here!!

It's almost time!! We only have one month left until the Walk to End Alzheimer's! I'm getting giddy about it. In fact, I've already figured out our dress code for next year. I know, I'm a nerd. But I really enjoy coming all together in support of my mom and all of those afflicted with this cruel disease. This year is going to be the first walk that my brother and his family will attend, and I'm really excited about that. We will ALL be together, united for mom!

Let's take a look at some fun pictures from last year. We sure know how to have fun.

So of course the purpose for this walk is not only to march around with purple hair and stylish t-shirts to show our love and support for those with dementia, but it's to raise money for the Alzheimer's Association who provide a lot of resources and support for the families and individuals affected. Their programs simply could not run without the generous donations from sponsors. With that said, if anyone feels inclined to donate to this cause, please visit my page and consider donating! My goal is to be a champion and I'm only $125 away ($500!!)

CLICK HERE to donate to the coolest Team Dee Captain ;)