Monday, September 29, 2014

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.

Thursday, September 25, 2014

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. 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!!

Tuesday, September 23, 2014

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!!

Friday, September 19, 2014


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!!

Thursday, September 18, 2014

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)
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!!!

Monday, September 15, 2014

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.

Friday, September 12, 2014

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 ;)

Thursday, September 11, 2014

While We Were Out

While we were taking our trip to Rexburg, I got a call from my sister, relating a phone call she received from my Aunt. Apparently, my Aunt had gone over to watch mom on that Friday. She heard the blow dryer going in mom's back room so she decided to check in on her. If you missed my earlier post about the blow dryer, mom has been burning holes in her clothes as she tries to dry herself with the blow dryer. When Aunt Claudia walked into mom's bedroom she expected to see mom drying herself off with the blow dryer. To her surprise and horror, she found the blow dryer laid down on the stool next to mom, turned on to full heat as mom stood by with a knife in her hand, chopping down on the top of her hair in an effort to cut off the pieces that were bugging her (you can catch up on her hair cutting adventures here). After an unsuccessful search for the scissors, mom got wise and decided a knife might do the trick. Needless to say, all of the knives are now under lock and key.

On Monday, I went over for my morning with mom. I heard the blow dryer going, as always. I was a little wary of the noise given my Aunt's experience the week before. Sure enough, when I walked in mom's room, the blow dryer was sitting on the stool by itself, emitting intense heat against mom's pant leg as she stood over her mirror, applying gobs of make-up on her face. I walked over and without any warning to mom, unplugged the blow dryer and hid it away. While I searched for a hiding place, mom told me I should "support" her and shouldn't be taking her blow dryer away; she was completely oblivious to my hiding place next to dad's side of the bed. For the rest of the morning, mom was upset with me and mumbled comments such as,

"You need to give me back my blow should support me...I never did this to my mom..."

It was hard and a part of me wanted to make her happy and give her back her blow dryer, but I knew I couldn't give in to her temper tantrums. I wouldn't give my toddler a knife just because he threw a fit that he wanted it; it's the same scenario with my mom. The blow dryer has become a hazard.

Fast forward to the next couple of days. My Aunt and Uncle have been over taking care of mom and have noticed that the shower stall is completely dry. It seems that without a blow dryer, mom's routine is off and she believes she can't shower. I brought this up with my dad and he came up with an idea to disable the wire that gives heat to the blow dryer. He figured most of the risk would be gone with the heat. He asked if I'd check up on her this morning and make sure that she showers.

I showed up to mom's at 9:00 this morning, right as she was about to start getting ready. She complained of me being in her room, concerned of my seeing her "naked" and a "plain Jane". It seemed as though she planned to shower, so I left the room to give her some privacy. After about 20 minutes, I decided to check in on her since I hadn't heard the shower going. I found mom halfway dressed with her head in the sink. Upon further inspection, I found that the shower stall had only a few drops of water directly under the faucet while the rest was dry. It didn't take long to figure out what mom means when she says it's a "severe shower day". I am guessing that "severe shower days" means she gets her whole body into the shower to wash off; the rest of the days it seems she must be washing her hair in the sink and perhaps rinsing her lower half in the shower. I don't know exactly how long this has been going on, but I think the dry shower stall mystery is solved :(

At our previous trips to UCLA, they always liked to point out mom's strength. At the top of the list was her hygiene and the fact that she was still able to take care of herself. Now that this is slipping, I wonder what is left.

Tuesday, September 9, 2014

The Past Few Weeks

A couple of weeks ago, my dad and I loaded up his trailer and drove my daughter up to her new home in Idaho, where she will be attending college. This new phase of life is very exciting and even more so because she is going to my alma-mater! It was so much fun reliving memories and traditions of when my parents took me up to college 15 years ago. We took her to her first dinner in Rexburg at the same restaurant my parents took me too. We have some funny memories of our dinner there 15 years ago...let's just say our service was horrendous and after our 2 1/2 hour dinner ordeal, my dad left the waitress with a penny tip and a note: TIP: To Insure Promptness. Yet, we went back. What can I say? We love tradition. My dad and I are both very alike in that; we have a sentimental side that loves tradition. Luckily, our service was completely opposite this time around and it was fun sharing those memories with Maurina.

We took a trip down memory lane and toured the campus (which has changed a lot) and I shared stories with Maurina about my glory days. I reminisced about Mother's Week-a week in which all the mothers came to visit their kids at college, went to class with them and attended various activities put on by the clubs and programs. I have such fond memories of the 2 years that my mom came up to visit me for Mother's Week. It was bittersweet thinking about them.

Before we left, I tried and tried to get my mom to understand that Maurina was leaving for college. I wanted to spark her memory of those happy days when she took me off to school, explaining to her that Maurina is going away to the same college I went to, but any memory mom may have is now hidden in a deep place. She understood my explanation of college about as well as I can understand calculus-which is not very well. Before we left, Maurina tried to give grandma a hug and tell her she was going, but mom hardly acknowledged her and stood still while being hugged. Later, Maurina resigned to the fact that "grandma probably won't remember me by the time I come to visit at Christmas."

Though the trip was a little bittersweet, it was mostly sweet. Even though mom couldn't join us, I will forever have those memories to hold onto and cherish. I do have to say, I am very grateful for the people who helped out while we were gone on this trip. I really enjoyed the father-daughter time with dad. We always have good conversations and fun while we're out...even though people frequently mistook him for my husband rather than my father. Ha ha. This trip wouldn't have been possible without my sister and her husband, who spent their nights over with mom, and for my Aunt and church friends who made sure to be there to care for mom while we were out. It's important for caregivers to get a break, and dad sure needed it!

Throughout our 16 hour drive there and back, we had a lot of time to talk. We talked a lot about mom and about the future with mom. We have some really hard decisions to make; or rather, my dad does. Much has transpired over the past few months and mom is really to the point where she needs more care than we are currently providing. Yet, we aren't ready to think about a "home" for her. I honestly don't know if my dad will ever get to that point. But it's evident that we need to do something more than what we are doing, both to keep her safe as well as to keep her out of trouble. So...back to the drawing board. I suppose it's time to look into hired help.

Here are a couple of pictures of the trip we made when my parents took me to college. The second one was taken during Mother's Week. And I don't know why I look so wide in the picture; I think it's the dress ;)