Do Good!

When I was a kid, my mom found a card with my name on it and the meaning written beneath it. It read:

"Cassandra
Helper of Mankind"

She always told me that the meaning of my name fit me perfectly; that I was the kind of person to help others. I don't know how well I've really lived up to my name, but I can say that I do try to help others and spread some goodness wherever I go. Maybe I've subconsciously had it rooted in me because of my mom's opinion of me.

Some people may think I'm a little bit crazy for starting The DEANA Foundation. Some frequently asked questions include:

"Don't you have enough on your plate?"
"Shouldn't you be putting more of your energy into your mom rather than a foundation?"
"How does this benefit your parents (mom specifically)?"

These are probably all fair questions and they are all questions I have asked myself. Sometimes I wonder why I take on these ambitious project9s. Why can't I just be "normal" like the other moms around me and spend my time volunteering at the kid's school, or join the PTA? (By the way, this was always my plan as a mom). I am always second guessing myself and I've spent many hours pondering these questions. These are some of my conclusions.

1. "Don't you have enough on your plate?"

*Yep, I have a lot on my plate. I always do; that's a part of life. Just when you think things are going to calm down, something else comes up. I'm the kind of person that likes to stay busy. I don't spend much time in front of the TV; I like to be productive with my time. I will always have a lot on my plate.
*It isn't something I can really put into words, but I feel inclined to do something in the face of the disease. Early on, before I started writing this blog, I felt the need to be proactive in the dementia community. Being involved keeps my mind busy and gives me a focus. It's easy to sit back and let the sadness and despair consume me; I feel so helpless with my mom and in some way this makes me feel like I'm doing something.

2. "Shouldn't you be putting more of your energy into your mom rather than a foundation?"

*I feel like being involved in this cause and in this foundation actually helps me to put my energy and focus into my mom, rather than away from it. I am reminded how much my dad needs support and I try my best to be there for him and my mom. There aren't many times of the day that my mom isn't at least in the back of my mind. I think it also helps to bring our caregivers and our community together and more aware.
*One day, my mom will no longer be here. That is a sad reality that we've had to face; we lose her little by little, more and more each day. When she is gone, there will come an emptiness. Even though there's an emptiness now, I still devote a lot of time and energy to taking care of her. I need something to keep me going when she is gone. I don't want her to be forgotten. I feel like this foundation is a good way to honor her and keep her memory alive. I hope it's inspiring and encouraging for my dad to see how many people support and love my mom.

3. "How does this benefit your parents (mom specifically)?"

*There are no guarantees that this will benefit my dad and mom. I didn't start this foundation with selfish intent. Nevertheless, my dad is free to apply for a grant just as any other family is able to. He will go through the process and our board members will vote on who receives what amount of money. Our goal is to help as many families as possible; certainly he isn't exempt.
*My family is not the only family suffering. Who knows if one day I or one of my children could be affected? Aren't we all here to help each other??

I struggle daily with self-doubt. I harbor the fear of failure. I want this foundation to succeed. I want my mom's name and legacy to be remembered. I want to help other people who are suffering from this heartbreak. I want to live up to what my mom always thought of me, to be a "helper of mankind."

With all of that said, I do want to invite all of my readers to check out our foundation website. It is actually getting a professional make over right now, so if you check back next week it will look different (and way better!!). Our foundation needs help to give help. If you feel inclined to join the cause and help others on this journey, there are many ways to help, whether near or far.

For my local readers, we have a foundation charity event coming up on August 21st. It is going to be an evening of fun with dinner, karaoke, some magic, and raffle prizes. I'm posting the flier here and you can also visit our facebook page and website. Tickets must be bought in advance in order to plan for food (deadline is August 17th). You can buy them on our website's "shop" page or through me personally.

Thank you to all who continue to support our family and The DEANA Foundation!

To visit The DEANA Foundation, please click here.

An Unpleasant Day

I've been fighting myself all day about writing this post. It's hard to share some things that are so personal and private and I don't want to shame my dad in any way (although he has nothing to be ashamed about). Maybe I shouldn't write anything, but then I wouldn't be sharing the whole journey: the not-so-good, the bad and the ugly. Today was an ugly. It was the kind of day any caregiver would dread and I was fuming for the better part of the day.

It started when I stopped by my dad's to drop something off for my Aunt, who watches my mom on Friday mornings. My dad was supposed to be gone, but his truck was parked almost midway down the driveway with his front end hanging a couple feet into the street, which I thought was odd. I walked up to the porch and noticed a white car parked across the street that I didn't recognize. As the kids and I reached the doorstep, I pulled my house keys out and went to unlock the deadbolt only to discover that the screen door (which is always kept locked to prevent mom from running out) was not only unlocked, but cracked open. Strange, I thought. In a quick instant I wondered if something was going on and when I opened the door I walked in to find two women, standing in the living room and talking to my dad, who was sitting on the couch. One of the women was holding a clipboard and after only a few seconds of listening to the conversation, I knew they were talking about my mom.

I looked over to my Aunt Claudia, who was also sitting on the couch, and gave her a questioning look, wondering what this was all about. She mouthed the words "social workers" to me. Weird, I thought, crinkling my nose. I left the room, while they continued talking, to check on my mom in her bedroom. Nothing seemed out of the ordinary in there. When I returned to the living room, the social workers were finishing up their visit and said good-bye to my dad. As soon as they left, I turned to my dad.

"What was that all about?" I asked him.

"Well, it seems somebody called Adult Protective Services on me," he said, matter-of-factly.

My jaw dropped and I couldn't even find words to respond. It made no sense. Who would do such a thing? Why would someone call and cause trouble for my dad? And most of all, what could they possibly have reported??

When I finally found my voice to ask my dad these questions, he replied that the social workers were not allowed to tell who made the call or why. All they could tell him was that *someone* called because they were "concerned" about his wife.

The social workers checked in on my mom and talked to my dad, who had nothing to hide. He answered each question honestly and opened up about some of the struggles we've faced. They talked to him about the option of putting my mom in a facility; my dad told them it was out of the question. In the end, I think they were satisfied with all of my dad's answers and could see that he is doing his best to take care of his wife; they didn't say anything about a follow up but I don't really know what the procedure for that sort of thing is (if they would tell him or not) but I fear this has opened a door to social workers now breathing down our necks and watching our every move.

Let me just tell you how I felt when he shared this information with me. You know what they say about Mother Bear Claws? It was something similar to that. How dare somebody call Adult Protective Services on my dad!! My dad loves my mom more than we even know. I can see it in his everyday actions for her; working hard to find a way to keep her at home where she is comfortable, keeping her happy with her pb&j sandwiches and "slim fast" and Bath & Body Works; buying her endless supplies of make-up and following after her on her walks; disabling hot wires of her blow dryer just so that he doesn't have to take the blow dryer away from her completely (she loves that blow dryer!); switching out her non fat milk to almond milk in an effort to get her something more nutritious and easier on her stomach (talk about a pain in the neck!)...these are just a few of the great lengths that my dad goes to for my mom to see that she is safe and happy. If my dad didn't love and care about my mom so dang much, he would've put her in a home a long time ago. None of us are perfect and this is a hard, untraveled road that we find ourselves going down. Mistakes may be made, but make no mistake about her well-being; mom is getting the best care possible at this time. At the end of the day, people may disagree with the way we deal with things, but it is nobody's business!!

I've spent most of the day stewing over this issue. I can't figure out who would do such a thing. I would hate to think it could be any of our caregivers or family members. Most of the immediate neighbors know my parents. If there was any concern, why would somebody think they need to address it with Adult Protective Services? I've tried to think that maybe it really was out of concern for my mom but let's face it, calling APS is a chicken move! If there's any concern, they could have talked to my dad. Instead, this person has added even more stress into my dad's life because now, whether he realizes it or not, APS is going to be checking in on him, watching for any and every little mistake; this is what worries me the most. Until someone has had to care for their loved one with dementia, they don't understand it-not social workers, not therapists, not doctors. The last thing a caregiver needs is someone breathing down their neck and feeling that they aren't doing a good enough job.

So, for the person who called APS and to everyone else reading this post, let me say it loud and clear: MY DAD IS DOING A GREAT JOB CARING FOR MY MOM!! I admire him greatly and have learned many lessons of love from him. There's nowhere else that my mom could be where she would be better taken care of or loved more than with my dad. So...if anyone has a problem, either brave up and bring your concerns to my dad, or go away!

Raelynn's Special Day

Yesterday was a bittersweet day. Sweet because it was my niece, Raelynn's baptism day. Bitter because our family wasn't whole.

Baptisms are special events in our families and our religious culture. As a family, we are always there for each other for these important life events. Of my parent's 12 grandchildren, 6 have been baptized; Raelynn was grandchild #7. She is also the first grandchild baptism that my mom has not attended. The last two were baptized two years ago and even though mom was struggling with her dementia, she still went to church most Sundays and understood the special ordinances that were taking place. She was excited and happy for these occasions and for those of you who have been reading my posts from the beginning, you may remember that mom was even a bit obsessed with God and church for a while. It was one of her favorite things to talk about...over and over and over!

I can't tell you the last time mom has mentioned anything about church. It's been well over a year since she's attended church. She had no understanding of Raelynn's special day whatsoever. Her absence was noticed and felt by all of us. When we took our picture together in the hall, as we have with each baptism, I felt sad realizing that this was the first (but not the last) baptism that mom has missed. Several of us noted that grandma wasn't there. She's missed so much over the past couple years-particularly the past year. Yet we've only just begun. My mom won't be there for my other two boy's baptisms, or for any of her grandkid's high school graduations or weddings or baby showers. Her presence will always, always be missed.

While Dad Was Out

Last week, my dad flew out to his home state of Connecticut, with his 4 sisters, to attend their cousin's wedding and have a little family reunion. He was gone for 8 days and 7 nights. It was a very much needed break for him and I'm really glad he got to go. I know he worries leaving mom behind, but he knows that he can count on us to help him out.

I've watched mom plenty of times in the past when dad has gone out of town. We have the usual routine of caregivers during the day and between my sister, her husband, my husband and myself, we rotate turns spending the night. I'm finding it a bit more difficult as her disease progresses. She is to the point now where she needs some help getting into the shower, so that was one of our jobs while dad was out-making sure she showers. It's not an easy thing to have to disrobe your parent and force them into a shower. The first time I had to do that, I really felt like I was violating her in some way. The first time is the hardest. After that, you learn what is necessary to do and you just learn to it. It's probably more difficult emotionally than anything else.

It's hard to put into words all the emotions that I felt during this week of caring for mom, but I was glad that I was able to come over and help my mom (and dad). While it's been difficult to have to take on a parent role with my mom, there were some tender moments as well. One night, mom was laying in her bed and I went to lay down beside her, just to keep her company (and maybe for my own comfort as well). She was mumbling that her face hurt. She hasn't been washing it well and I discovered that she is using her body wash as a facial moisturizer; needless to say her skin is dry and peeling. I knew she would fight me, but I decided to try and wipe her face with a cleansing cloth. At first, she protested and pulled her sheet over her head and began laughing hysterically, which made me start laughing as well. Eventually, she let me finish wiping her face as the dead skin wiped off in the cloth. I brought over her face moisturizer and began rubbing it into circles on her face. She initially started swatting my hand away, but she finally calmed down. She laid her head back and closed her eyes as I rubbed the moisturizer into her thirsty skin. For a quick minute, I thought she might have even enjoyed the nurturing.

There were definitely ups and downs of the week. I felt a huge weight of responsibility on my shoulders while my dad was gone. Even though I had help from other people, ultimately I felt the most responsibility for her. I was in charge of coordinating the caregiving schedule so I had to worry if people would show up or not and fill in when people cancelled at the last minute (which I usually do every week anyway, but not 24/7). It's no different than being a parent; your children are on the forefront of your mind constantly, and that's how it was with my mom. But with the responsibility of caring for someone also comes a growing love for that person. My heart swells with love for my mom. It is so hard to balance my family and kids and all of my other life responsibilities and I'm not perfect. By Thursday night, I admit I did have a little bit of a meltdown and was feeling discouraged. But I think that comes with the territory of caregiving. Caregiving is hard and it takes a lot out of you, and there are times that you have those meltdowns, but it doesn't change your love for the person. It made me realize and appreciate more of the weight that my dad carries around with him every day. I am really glad that he was able to have such a fun week with his family; it is well deserved.

I feel impressed to say one more thing; someone made a comment to me that I want to address. It was insinuated that I write about things to put it out there and show off to everyone what I do for my mom. That insinuation really hurt my feelings. It's often difficult to write the things that I do and I hesitate sometimes to do it. And I've always had the personality that worries what people will think (though I'm learning, with age and experience, to get over that). I write for a few different reasons: to educate about the disease, to help others in their journey and because writing is therapeutic for me. People leave me very kind comments which I appreciate, but it sometimes makes me uncomfortable because I really don't feel like there's anything extra special about what I'm doing. I think it is what anyone would do. I do not write to seek praise or to get a pat on the back, simply to share our journey with others.