Wednesday, December 10, 2014

The Hair Dyeing Fiasco

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

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

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

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

"Mom, shouldn't touch your eyes. Don't touch your eyes."

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

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

Tuesday, December 2, 2014

The Last Holiday

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

Not to worry, says my dad, the optimist. He planned to bring his fifth wheel trailer; after all, there is a trailer camp a mile down the road from Joe's house. Mom would have her own space to sleep and get ready. But what about throughout the day? we all wondered. Dad figured that if Joe set up mom's favorite computer games on his computer, mom would be content to stay at Joe's house throughout the day to play games and maybe, just maybe, engage with family. one seemed to be off to a good start. Wednesday morning, dad dragged mom out of bed, showered her and had her in the truck, ready to go, by 8:00. That is a huge accomplishment for mom. Even though she couldn't understand where exactly they were going (she had it in her head that they were going to the mall and was annoyed with dad many times for going the wrong way), by the time they had arrived to Arizona and we answered the front door, mom came plowing through declaring,

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

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

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

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

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

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

"This is the last holiday".

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

"The magic is gone," he says.

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

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

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

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

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

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

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

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

And now...on to Christmas.

Monday, December 1, 2014

Mom's Famous English Toffee


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!


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

English Toffee-WITH SHIPPING

English Toffee-WITH SHIPPING



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

Tuesday, November 18, 2014

The D.E.A.N.A Foundation

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

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

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

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

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

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

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

Wednesday, November 12, 2014

No Way Out

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

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

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

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

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

Thursday, November 6, 2014

What Matters Most

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

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

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

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

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

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

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

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

Wednesday, October 29, 2014

Changing Mom

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

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

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

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

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

"No, stop it, don't do that," mom said with a little smirk on her face. She glanced at me from the corner of her eyes with a mischevious 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.