Precious Papa

Dad. 

When you hear the word Dad, every person has a different picture and perspective of what that three-letter word means to them. I am so very lucky that I have one of the best Dads in the world. Seriously. No doubt.

From the beginning, my Dad has been my world. He is the guy that I looked up to. He is smart, so smart. He is the kind of smart that I think, how did you know that? Or, how can that be so easy for him? I remember a fraternity brother telling me a story about my Dad. While he was attending the University of Virginia, it was a time when everyone had a paper due. All of his fraternity brothers were slaving away—researching, writing, typing, and literally sweating—trying to get their papers done. All the while, my dad is coming in and out of the house, casually doing whatever. They weren’t sure what he was doing. Finally, someone says, “Roger, you know we have a paper due, right? Why aren’t you working on it?” My dad turns around and says, while tapping the side of his head, “It’s all right here,” and walked out of the room. He was that kind of smart. To me, his daughter, he is the smartest man in the world.

My dad is really funny and creative. I sometimes felt like I had Bill Cosby for a dad. (That comment may date me.) He could always make me laugh. He would create characters and act them out. Mainly, they would show up at a time designed to embarrass my sister and me in front of our friends. As he broke into character, our friends would laugh and say, “Your Dad is so funny! He is so cool!” My sister and I, on the other hand, would roll our eyes and drag him out of Barnaby’s Pizza, red faced and whining, "Daaaaad!"  He would laugh and smile, knowing that it would happen again. He loved having fun with me, my sister, and our friends. He hung a swing and trapeze in our basement, set up a stereo system, and built a chalkboard for us to play school. He got us roller skates and bikes and basketball hoops and took us on hikes in the woods. He even filled up the back of his pickup truck with hay and took all the kids around the neighborhood for trick or treating (the houses were spaced far apart, so it was quite a hike for little kids to get around).

And let’s not forget the time that he insisted that we call him “Precious Papa.” He would not answer to anything else. Morgan and I would yell, “Dad!” with no response, likely snickering in his head until we moan, “Precious Papa” in our best annoyed child voices. He would tell jokes or talk in some funny voice, just to see you smile. And watch out, he would hide and jump out to scare you, just to see your shocked face. I learned that trick from the best. Just ask my husband and kids.

If you were to tell him he was handsome, he would laugh you off, but I think he is. He has also always had an eye for fashion. Whether it was bringing home a pretty red dress for my sister and me when we were little girls, or now sending me the latest trendy shoes, I know that I can trust that my Dad will buy me something that I like and will get compliments on.

He is a writer, and a great one at that. He writes poem after poem. Some fun and whimsical and loving that he has written for my sister and me over the years. My dad writes poems that are so deep and intrinsic, that I personally don’t always understand them. That doesn't matter though. I still read every single one that he sends my way. I file it away so that I can pull them up later and read them again. He has written song lyrics about pickup trucks and broken hearts that only need a country singer to write music to them. He has written children’s books. I pull out the printed out copies and read them to my children. They tell me what they think and how they imagine characters and scenes in their little heads. And he has edited almost every single thing that I have written in the past couple of years (except for this, of course).  No complaints, he just does it, and in rapid time, I must say. This guy is good at it.

His intellect combined with his humor and his fashion sense now brings me to his heart. I think he has one of the biggest ones out there. Sure, he will try and hide it with his “Bah Humbugs” at Christmas and his complaints about bad drivers, but we all have his number. My Dad has always, and I mean always, been there for me. He helped me through school when it seemed impossible. I still remember him saying that although he personally could not understand the struggles that I was encountering with my learning disability, he would do whatever he could to help me and make it easier on me. When times were tough, he was always there with a dollar, an ear, or a hug. No matter how big or small my need, I always knew he had my back. When I was younger, it was rides to and from people’s houses, money for pizza, or help with a school paper that I could not seem to make sense of. My dad also went to every single one of my high school basketball games, home and away. One team was a long three-and-a-half hour drive, one way. It didn't matter how much or how little I played, I knew that I could look up into the stands and see his proud, smiling face.

And it is not just his family, he is a giver when it comes to others as well. When the man who worked in his fraternity house in college was having health problems, my Dad was the first to step in. He made sure that all of the paperwork was filled out and sent in that the man's wife needed. And if anyone out there has ever had to deal with Medicaid paper work, you know it is a darn near impossible feat. But there he was, doing paperwork, visiting this man and having others help contribute to the costs. He wanted to make sure that he and his wife were taken care of. He was giving back to a man that had helped them and became an honorary fraternity brother. 

And my mom, his ex-wife, that I am always writing about, he has helped her as well. He sent us money to help with her expenses. She never knew this, but he wanted to do something. No one ever would have expected this kind of gesture. To him, it was a given.

My dad has always been so good to my children. They call him Papa (thank goodness he doesn't require the "Precious" part anymore). They love their Papa. They love to visit him and spend time with him. We all ride the free trolley around town and Papa points things out. Papa takes my son, Jake, to movies that I normally wouldn't. But, that is OK. It is what they do. He buys pretty dresses for Reese, my daughter, and watches her parades that she puts on the basement, just as her mom and aunt used to do 30 years ago. He marks their height on the wall to show them how much they've grown since he has last seen them. He takes us to the beach and braves the ocean waves, teaching them how to boogie board. He sends letters and jokes and funny videos for the kids to watch. He is their Papa, whom they love so.

I know that I could never truly explain all my feelings I have for my Dad. I know I can’t recount all of the wonderful things that he has done for me over the years, for there are far too many. Despite the fact that most of my posts are about my journey with my mother, his love does not get lost. I am so very lucky to have been raised by a father that was always there for me. Raised by a man that loved and respected women and showed this to his daughters. I am lucky that I love talking with and spending time with my Dad, for I know this can be a rare trait. I know the stories of other Dads. Dads that were never around for their children. They didn't throw ball with them or help them with their spelling words. Dads that don’t show up when they said they would, or are full of broken promises. Not my Dad. Lucky me.

Happy Father’s Day to the best Dad a girl could have. I could never thank you enough for all that you have ever done for me. You helped raise me and continue to help guide me through my life. I love you, Precious Papa.

In A Child's Eyes

I have always said that although being the caregiver for my mom (who suffers from Alzheimer's) is hard beyond belief, I wouldn't have it any other way. My kids, Jake, 10, and Reese, 7, have had the opportunity to really know their grandma. They have experienced my mom, their grandma, at every stage of Alzheimer's disease.

Jake is an old soul. He is very intuitive when it comes to people's feelings. He is a caring, loving, and patient boy. He has always loved his grandma and cherished what he called their “special time” together. Sometimes he needed time with her without his precocious little sister clamoring for attention, and my mom understood that.

Mom has always loved to walk. In fact she is still somewhat obsessed with it. She walks every day, in the mornings with a friend and then constantly all day around the ward where she resides. When she lived on her own, she would take Jake for walks on the trail. They would fill his little backpack with water and snacks, and I would sometimes provide a disposable camera for him. He would see his grandma take pictures of flowers and he wanted to do the same thing. This became “their thing” to do.

She would have him spend the night, play trains with him, sing to him, and let him watch his favorite Thomas the Train or Little People videos. She was a calming and safe presence in his life. But what happens when the person you have known starts to change? It is hard enough for an adult, but how about a child? Just like his grandma, Jake has accepted her changes with grace.

There was a day when I was very upset about what was going on with Mom. I told them there would come a day when Grandma wouldn't remember who we are. Reese was so young, three at the time, that she just said, “Okay, Momma.” Jake, on the other hand, stopped playing his game, looked up and said, “Mom, we just have to enjoy each day that we have with her.” My son was right. That was five years ago, and we continue to take each day at a time.

As the years have passed and Mom has changed, both of my kids have accepted every single move and change that has developed. Although Jake sometimes says that he liked it better when we got to visit Grandma in her apartment, he still visits her in the locked down ward. Now, this place can be scary to a child. In fact, my nephew and niece are always very nervous to go visit their grandma when they are in town. It is like nothing one has ever experienced. Imagine going into a locked area filled with strangers. They are all doing something different-- from sleeping, to talking and yelling at things and at people who only exist in their minds. They are people who are stuck in another decade. Some talk and take care of dolls like they are real live babies. Others stare and don't speak, and still others lecture as if they are still teaching. Some try every door to see if they are open, or a few may offer you their walker. This could be overwhelming for anyone, much less a child. This has simply become normal to me and my children.

Despite all the “chaos,” Reese loves to go visit Grandma. She loves to talk to her and often says, “Grandma is funny.” Funny because what Grandma says, doesn't make sense. Reese doesn't care. She just wants to see her grandma, give her a hug and play with the baby dolls that are there. Reese has totally accepted her grandma for exactly who she is at every moment.

Reese, too, has fond memories of her grandma. Reese remembers Mom making tea parties for her. They would dress up in Mom's jewels and sit down to a fancy spread. Reese always would go to my mom's closet and try on every pair of her shoes, scattering them around and finally choosing a pair to wear around the house. Reese also remembers when my mom could no longer read and she would read to her grandma. There she was, a petite five-year-old sitting and reading to her grandma, 70 years old. Roles were reversed, but Reese was so proud of herself that none of that mattered. Some days they would draw pictures together and laugh at their attempts of drawing certain things. Good memories, just as they should be.

Mom understood Reese's passion and energy, just as she understood Jake's more reserved, cautious nature. She relished their snuggles and the sweet little voice whispering secrets in her ear, and she still does. She perks up when the kids come to visit. Although she has long forgotten their names, she remembers their faces and their sense of being. They hug her and talk to her and bring her treats that they know she will share with them. They walk with her and love coming to visit when it is activity time in the morning. They dance with her and make her smile and feel loved.

They have grandparents who go to their lacrosse and soccer games and visit their schools. They have a “Papa” who they visit in Virginia where they have adventures and memories of their own. They have cousins in North Carolina who they love as a brother and sister. The memories and experiences with my mom, their grandma, are much different. And although all of the experiences in their lives help to shape who they are as beings, I believe that the experiences with their grandma, an Alzheimer's victim, have made them much more compassionate, understanding, and accepting individuals.

They have learned to love a person for whom they are at the moment and to accept and love someone unconditionally. They learned that all people are different, but we are all human. We all have feelings and wants and needs. They have learned how having a grandma with Alzheimer's affects their own mother. They know how much I have to do for someone I love and that it is really hard and trying at times. They hug me when I cry, and they understand when I need a self-imposed timeout out to gather myself. Most of all, they see how I love my mom, no matter what.

These two little people have learned more about human compassion in their 10 and seven years then some learn in their entire lives. They bring joy to their grandmother, they bring their trusting souls to their cousins when they too come to visit their grandmother, they bring smiles to the other residents with their bubbly presence, and they bring love, understanding, patience and pride to their dear ole mom. I do my best to teach my children by example-- by how I live my life day in and day out. But what I found out is that I, too, learn from them and their examples of compassion, joy, and acceptance.

A Four Letter Word...Help

I am going to talk about a four letter word.  Help. Yes, I said it, help. That little word can mean so much, yet we seem to use it too infrequently, at least I know I do.

I have been that person who doesn't want to ask for help. I think I am capable of doing whatever needs to be done. I am strong-willed and a bit of a caregiver by nature, so I tell myself that I can do it all. I can be a supermom, a wife, a friend, and a caregiver and not think twice about it. Or can I?  In reality, just being a mom is a daunting task.  Add to that trying to have some “me” time, and things become even more difficult.  Then throw into the mix having a mom with Alzheimer's and my life can be downright crazy.

As a caregiver you have to ask for help, there really is no other choice. As much as I wanted to believe I could do it all, I quickly saw that there was no way I could. Before Mom was even diagnosed with Alzheimer's, I had to ask for help from our family doctor.  Mom was starting to admit some of the problems she was having. My family and my mom had just moved to Indiana, so we did not have a huge support base. I decided to start at the beginning with the family doctor and get his read. So, to the doctor we were going.

When I called to make the appointment, which I passed off to Mom as a check up, I explained that I needed to talk to the doctor before we came in. I wanted to be sure that he knew that the visit was not for a simple check up, but to get his opinion about her “state of mind.”  We agreed that he would treat this as a pre-screening for dementia or Alzheimer's.

Now, this may all seem quite sneaky, but it was what had to be done.  Mom's safety was more important than this little white lie. I have been lucky enough that, for the most part, Mom always has been a partner in this journey, and she has accepted her fate with grace. But as agreeable as she was, she was still frightened about what they might tell her.  Naturally so, but we had to get to the bottom of this and fast.

After the doctor had Mom answer a series of questions, and not have me answer for her, which is what I had been doing, I learned just what I was afraid of. She needed to go to a specialist to do an in-depth screening to see where her mind was.

I broke the news to Mom about what we were going to do. I told her that we had to see a geriatric neurological specialist who would be testing her for dementia and Alzheimer's. I could tell she was upset although she acted bravely. I think I was just as nervous as she was on the day we did the tests. It was like seeing a car coming before the crash, and we were about to get hit hard.

She was diagnosed with dementia with probable onset of Alzheimer's at 66 years of age. And so the journey began.

Help initially was not an option for me. I was going to figure this out. I wasn't even really dealing with my own emotions about the situation. I was simply in the “fix it” mode. I knew that there was nothing to “fix” with her diagnosis, but I was going to step in and be the one to do it all. Super mom at home and Super Daughter to her, because in my mind, she wasn't “that bad” yet. The truth is you don't realize how bad they are until they truly let you into their life. Over the years, Mom learned to compensate and therefore it was not always obvious how much she was struggling with everyday tasks.

I did everything for her-driving, appointments, bills, shopping- it all fell on me. Even social interaction was on me. Because we moved to Indiana only a few years ago, she really didn't have any friends. She had one lady that she would meet for coffee occasionally. This put the burden of getting out and having another adult for her to talk to on me. I was now in a world that had me feeling like I was in a cyclone, swirling from one task to the next. I had small children, a husband, dog and home and now a mother with Alzheimer's to take of. There was little or no “me time.” I was going to need to ask for help. The role as Super Daughter was so easy. My kryptonite had found me and I was in need of other's help.

The first time I sort of asked for help was when I told the apartment manager where she lived about the diagnosis. The manager promised to keep an eye on her and call me if they saw anything strange. Then, with the urging of my sister, we hired a lady and friend to come and help out once a week. This was simply helping with mail, taking her out, going on a walk with her once or twice a week. She also checked in more frequently if I was out of town.

As I said, despite how difficult this was for Mom, she handled things with such kindness and grace. She turned things over to me quite easily. If my sister and I told her something needed to happen, such selling her car, she conceded. She really understood that we had her best interests at heart, thank goodness. Then it was time to contact the Alzheimer's Association. We wanted to enroll in their six-week class for loved ones of people affected with Alzheimer's and their caregivers. We had no idea what to expect.

We were one of four pairs that came regularly. The others were mostly husband and wife teams. We had dinner, learned about the disease- its stages, how to make accommodations, etc. - and we talked. It was a blessing. We were able to see others that were going through the same things. It was interesting to see how people's symptoms developed at different times. For instance, Mom was already having trouble reading, which was one of her favorite things to do. Yet, there was another man who could watch TV, read, and follow it all, but was having trouble walking and was losing his depth perception. We had a manual that we were able to take home and read and reference. Mom wanted to have that book all the time. I think she believed that knowledge was power. She often said that she wanted to know where she was in the stages.

Over the years the Alzheimer's Association has continued to help us.  We had most of Mom's legal affairs in order already. She had given me power of attorney, we had done a living will and a health care power of attorney, but we saw what was coming for us. We knew that she would need to go into an assisted living facility and then into a more secure health care facility for the Alzheimer's.  My sister and I wanted to make sure we figured out what we had to do with her assets and then eventually get her onto Medicaid.

The Alzheimer's Association was able to give us the name of an attorney who specialized in the elderly.  We met with him and he complimented us on what we had already gotten done.  He said, “You are about five years ahead of where most people are.” You see, we made sure that we took care of things long before they became a problem. We were proactive and, man, did that help. This attorney continued to help us over the years. We had more meetings with him as her savings rapidly dwindled and Medicaid was becoming a priority. He answered questions for us via email when necessary. He stepped up time after time, he helped us immensely, and he did it all pro bono. We are so very grateful for his help. We know that we had one more person who had our backs when we needed help.

I cannot say enough about the caregivers Mom has had over the years while she was in assisted living, then the health center, and now in the locked down unit. They have comforted her when she was upset. They have been company when she wanted to take a walk and had to have someone with her. They have been super at communicating. All I had to say was, “I just want to sit down and tell you what I have been seeing going on with my mom. I want you to do the same.” We would have those meetings to make sure we were on the same page, understanding what Mom wanted and needed at the time. They dance with her. They tell her she is beautiful. And they let her help, as she believes she has a job to do. She believes that she too has to take care of the other residents in her ward.

We can't do it all. We need help and it is okay to ask for it. Find a support group. Contact your local Alzheimer's Association chapter. Ask a friend, other family members, or someone at your church for help.  Remember, others want to help you and your family. It makes us feel good to help others in need. So when someone asks what they can do for you and your family, tell them and accept the help with grace, just as my mom does.

Bully

Everyone is passionate about something. For me it is children. I want to help them, nurture them, teach them, protect them and help them to realize that they are an asset to this world. I want them to know that they matter. Not only that, I want them to discover that what they give back to the world matters.

I just finished watching the documentary “Bully.” It left me in tears. It broke my heart that there are so many children out there hurting other kids for no reason other than that they are different than the bullies. Because they don't fit into their mold and simply because they feel that they can and seem to think they have the right to hurt others.

What also shocked me was that this went on right in front of adults who did nothing about it. Bus rides are notorious for this type of horrendous behavior. I saw kids stabbing a boy with pencils, struggling with him and slamming his head into a bus seat. These kids were not only hurting this boy physically, but with words. They continuously told him he was a “pussy” or “faggot.” They told him they were going to bring in a knife and stab him, simply because he said, “You're my buddy, aren't you?” And you know what the bus driver did? Nothing. Looked in her mirror, saw what was going on and kept driving. Not even a “Stop that!”

When the parents went to administrators, they were shrugged off. The offending kids were told to stop doing that. The parents explained that children should be safe when they go to school. Their son no longer felt safe. He was becoming even more disconnected and numb. That boy was just one of the kids the show followed. There were others who had just as much trouble. And others who had taken the only option they believed they had - suicide.

I felt compelled, once again, to talk to my own children about bullying. Unfortunately, bullying has become an issue that we have to discuss with our children, just as we talk with them about strangers and puberty. We discussed what bullying is. We talked about their options for handling a situation, and who they could talk to.

We also talked about being kind. I suggested that when they see a new kid in school they should welcome them, say hello, ask them to play or sit with them at lunch. I asked them to think of their friends and how much they love spending time with them. Then I told them to imagine if they did not have one friend, not one. No one to talk with during school. No one to play with at recess. No one to invite to a birthday party or play with after school. To them this was unfathomable, as it is for most of us.

I explained that there are people who do not have a single friend. They have no one to talk to. My daughter, Reese, said, “Momma, that is awful. I would not like that at all.” We all agreed that every person was different. People like different things, look different, believe different things, and different is ok. My final words were that every person in this world deserves to love and be loved. We don't have to agree with everything someone does, but we need to practice kindness, love, and understanding.

My own son, Jake, had dealt with a kid that he saw as somewhat of a bully. The ironic thing was that they called each other a friend. This kid was bigger than Jake and for some reason felt compelled to say things just to get under his skin. He was doing it to his other friends as well. This “bully,” who I will call Jon, never laid hands on Jake, it was all done with words. We had over the years discussed how Jake could handle the situation. We talked about telling Jon that he didn't like what he was saying and to use a firm voice when he told him to stop. We talked about simply not playing with him. Jake did these things and Jon would stop for a while and then start up again. We had also told him that if the bullying ever escalated, he had our permission to protect himself. Not throw the first punch, but if it came to blows, do what he could to protect himself.

Then one day I was driving Jake to Brazilian Jiu Jitsu and he said, “Mom, I have to tell you something. I put Jon in a head lock today.” In my head I was thinking, “Way to go buddy, you finally stuck up for yourself.” Out loud I asked what happened. Jake explained that for years he had listened to Dad and me. He used his words, he told him firmly to stop. He had avoided him at times, but today he just couldn't take it any more. Jon was saying the same things he had been for the past three years. So, at recess, Jake put the much bigger Jon in a head lock and told him to stop bullying him. And it worked. He stopped.

I said to him that I was glad that he protected himself. We also talked about the situation and what had been said. I explained that if he were to get in trouble, I needed his side of the story. I reminded him that just as his dad and I would have his back, Jon's parents would have his too. We needed to know the details in case it came to anything. It didn't. It was just a playground tussle that ended in less bullying and a more confident Jake. The next day Jake told me that he and Jon actually talked it out, shook hands, and agreed to be friends. I told Jake that I was very proud of him and how he handled the entire situation. That he handled it with a lot of maturity.

We were lucky. Our story was really minor compared to the ones we hear about across the country. Kids are ruthless. The victims can't get away from it. They are pummeled with hate at school. They are hated and stalked via social media and on the internet. They are inundated with hate and abuse all day long.

And it isn't just our kids. You can turn on the news, scroll through social media sites, peruse the internet, and flip the pages of magazines and find hate. Bullying doesn't just happen with our children, it continues into adulthood. Someone can't believe that someone else would dress or look “that” way. Someone disapproves of someone’s behavior, or snipes at someone for loving someone they “shouldn't.”

It is everywhere and I am tired of it. I no longer watch the news. I can go on the internet and find the news I need to know. I don’t need to be bombarded over and over with pictures and words that express someone’s hate. I am not naive about what goes on, but I have made a choice to do my best to fill my spirit with good. We all have enough crap that goes on in our lives, why do I need to constantly bombard my mind with more? I don't.

And I believe we all need to get over ourselves. We are all different in ways large and small. From the second we are conceived we have different DNA, we have different experiences that shape our lives. Your way may not be my way. My religion may not be yours and guess what? Your way or my way is not “the truth,” it is simply our individual truth. Just like what I am writing about today, all these thoughts, ideas, and opinions are my own, shaped by my genetics and by my life experiences – by my nature and my nurture. I would love it if others agree with me, but I don’t expect it. But, I ask us all to consider where we too have been bullies. Maybe we could consider letting go of the hate, judgment, resentment, and anger that we all deal with daily and replacing it with love, joy, kindness, and understanding. For I believe that we should live in a world where people are looking to lift someone up, rather than tear them down.

Going the Distance

Caring for an Alzheimer's patient is no joke. It's tiring, complicated, time consuming, joyful, and an emotional roller coaster, to say the least. Two daughters, living states apart, have found a way to share this amazing responsibility when caring for their mother. Being a successful, loving caregiver, daughter, and sister is beyond difficult, no matter the geographical distance. At the end of the day, through shared love and pain, it's brought them closer.

Molly lives in the same town as their mother (who is divorced and been living with Alzheimer's for almost a decade), and has taken the leading caregiver role. Morgan lives in North Carolina, performing a different type of supporting role from almost 700 miles away.

Molly, The Local Caregiver

Saying that my mother having Alzheimer's is a challenge is an understatement. It is a struggle every single day. Not most days, but every single day. At this advanced stage, she lives in a “locked-down” facility, so a lot of the every day tasks (getting her dressed, making sure she gets her medicine, cleaning her, feeding her, and every day activities) are taken care of by the wonderful staff. Morgan and I are blessed that we found a nice facility with loving staff members. They do a great job of keeping me informed of how she is doing and what she needs. Not so bad, you might think, the caregivers in the family are mostly off the hook, right? Wrong.

There is the “taking care of her affairs,” and then there is the ever-changing one-on-one relationship that I have with my mom. They may seem easy to differentiate, but in fact they aren't. The two criss-cross like a spider's web, and tug at your emotions even more.

I visit my mom about twice a week. I walk with her, comfort her when she gets sad, even dance with her on occasion. These visits are mainly confined to the facility. If she is taken outside for too long, she starts to get over-stimulated by the day-to-day activities that most people find normal.

When my mom lived in Assisted Living, my role as a caregiver was very different. I had to do her grocery shopping, and make and take her to all of her appointments. I had to constantly check her supplies to make sure she had enough of things. Just what you'd expect, right? And then there were the emotional expectations. I am still not sure if I put these expectations on myself, or if she put them on me. Maybe it was both of us. At this time, when she was much more lucid, she knew how many times a week I came and saw her. She knew if I hadn't called to check in. She knew if her memories were slipping away. And with that little bit of awareness came a great deal of guilt.

And boy, did I lay a thick pile of guilt on myself, every second of every day. Was I visiting her enough? Was I being patient enough? Was I seeing any signs of her declining? Were the stories she was telling me real or merely real to her? Did I take her out enough? Had I brought the kids over lately to see her? How long should I stay and talk with her? Which appointment did I have to take her to this week? Were her bills paid? I look back at those years, and I can feel the anxiety, sadness, and guilt sweep over me like a wave in the ocean.

Not only was I trying to deal with and understand that the mother I once knew was slipping away, but I had to keep it together enough to be responsible for her as well. I never felt like what I was doing was enough, that I was enough. To separate the caregiver roles from the relationship of mother/daughter was too immense at times. I cried all of the time. Then on top of taking care of her, I had my own family and own stressors to take care of. Was I ignoring my responsibilities at home and my own family in order to take care of my mom? I was climbing a mountain whose peak soared way past the clouds.

As her abilities declined, I kept thinking, “Well, now the facility can take care of that for me. It is one less thing that I have to worry about. Things will be easier now.” Guess what? It never is. I was holding onto things that I wasn't expected to be responsible for anymore, like doing her laundry, just to have something to control. Doing her laundry meant that I had to go see her twice a week. It was a way, even when I felt like someone would have to drag me in, that I knew I would continue to go see her.

Because it is not always easy to go see her. That may sound cruel, but it is true. It is mentally exhausting. I know that I have to be on point when I go see her. I have to help make sense of her confusing stories. I have to accept the realities in her world that don't make sense to me. I have to meet and greet people that only she can see. I have to simply accept her exactly how she is at the moment. I always make it out the door fine. Whether I make it to my car or home without crying, it all depends. If not today, it will be soon. That I know.

Others that don't know, that aren't caregivers, have no idea how much we do every day. I often describe taking care of my mom like having a part-time job, and I have a lot of help. There is constant paperwork—medical, insurance, psychological, legal, mail, bills. There are constant caregiver meetings to discuss her condition, what medications she is on, and her behavior. And the phone calls.

Just as I think, “Wow, things are pretty good. She is doing well. She must have plateaued for a while.” Boom, it hits me. The phone rings, I look at the phone number, and instantly panic and dread creep over me. Sometimes they are asking my permission to give my mom something simple, like a painkiller. But more often than not, they have called because of her behavior or emotions—she won't stop crying, or she is mad and pushed someone. These things are not my mom, not the lady that I knew; these irrational behaviors are the Alzheimer's.

I was discussing with my sister that I often grieve as if our mom has died, and she said she feels the same. I look at pictures, and talk with my sister, feeling a “remember when” nostalgia. Each time the disease progresses, each time I see my mom, I am grieving the loss. The loss of her memories, her independence, and the ability to interact with her as the mother and me as the daughter. I grieve as she forgets names and people that were once the center of her life. I often wish that I could tell her my problems, have her put her arm around me as I lay my head on her shoulder. But that role is all mine now. It is my arm around her, comforting her frail little body. Letting her rest her head on my shoulder as she explains why her day has been hard.

We caregivers are tough, and we are strong because we have to be. Every day I struggle with my role. With all of the responsibility of being a caregiver melded with the emotions of losing a loved one, I often feel alone, sure that my husband, my sister, my dad, and my friends are tired of hearing about it. Tired of the stories, the tears. I know that there is nothing that they can do but listen. For this cruel disease takes our loved one—has taken our mother, a sister, a friend.

But, I want the happy ending as much as the next person. No matter the situation, I know that my sister and I have done our very best at each moment with what we were given. We have always had people surrounding us to love us and offer whatever encouraging word they can. But here's a tip: don't ask, “How is your mom doing?” The true answer is not what any one wants to hear. Instead, ask how I am doing with taking care of my mom. Ask how you can support me, my sister, or any other caregiver. Sometimes all it takes is the knowledge that someone else gets that this road is a long and treacherous one. That someone else would offer that arm and their own shoulder to bear some of the weight, even for just a moment.

Morgan, The Long-Distance Caregiver

Long-distance relationships: they are never easy. You probably have loved ones—partners, parents, siblings, cousins, etc.—in other parts of the country or world. You don't see each other much, but at least you have letters or e-mail, the phone, even video chat. You work hard to keep in touch as best you can, even if there are inevitable gaps of time in between. But what if you didn't have those technological crutches? What would your relationship be like? How would you communicate, nurture, and maintain that relationship if you couldn't write, see, or speak to someone?

Living across the country, it's been an increasingly difficult and creative process to keep in contact with and support my mom. I have two young children, a busy life, and a limited budget; flying or driving out to see her is a twice yearly thing, if I'm lucky. As her dementia got worse, so did our long-distance relationship.

When my mom's dementia first started to show itself, her ability to communicate deteriorated first. She had trouble reading, and then speaking. Soon e-mails or letters became impossible. Speaking on the phone was a challenge, a game of audible charades. She'd forget a simple word, and I'd chime in with, “does it fly? What color is it? Is it an animal, vegetable, or mineral?”, and the vocabulary guessing game would commence. Most days, my mom had a sense of humor about it, and we'd laugh and feel grateful to hear each other's loving voices. Other times, she'd break down in tears out of frustration, and I'd listen helplessly on the other side of the phone, hundreds of miles away. No way to hug her, stroke her back, and show her how much I love her. Just soothing words (I hoped), of “I love you,” and “I know it's frustrating, but I can't wait to see you soon.” Then I'd hang up the phone and burst into tears myself, frustrated that I couldn't help, that I was so far away that even a simple phone conversation was an epic fail.

Eventually, Mom lost her ability to make or receive calls, check voice mail, maintain a phone conversation (don't even get me started with our attempts at FaceTime), or even recognize what a phone is. Making a conscious decision to stop calling her was devastating for me. With all of the complications related to her declining health, phone conversations became quite painful for both of us, and she wouldn't even remember that I had called within minutes of hanging up.

Since Molly took on the responsibility of our mom's daily care, where did that leave me? Day after day, feeling useless, guilty, and selfish for living my own life, running my own errands, and not even picking up the phone to call my own mother. Although there are perfectly good reasons for it, and my sister is well aware and understanding about it, it makes me feel horrible. I miss my Mom. I miss being part of her family. I miss hearing her sweet voice and seeing her smile.

And then the financial issues cropped up. Despite the fact that Mom had always budgeted carefully and put away money for retirement according to a specific plan, nature screwed up that plan and threw it in the trash when she had to stop working 10-12 years earlier than expected.

Aha! A way I could help. I started sending little bits of money every month that I might have spent on my myself, helping her with her budget and some paperwork when I could, and buying her things she couldn't afford herself. I finally had a tangible purpose—I could provide funds to make her life a little easier, a little nicer. My loving husband was understanding about this, and believe me, it's a good thing he was, because it got worse.

When my mother finally had to enter assisted living care, the costs were astronomical. My husband and I decided to help. It put a huge strain on us, but we knew it was as much for my own emotional state as for my mom's quality of life. We couldn't stand by and do nothing, knowing we had the means to help family. Finally I had a concrete way to contribute. Every time that sliver of guilt would creep in after hearing my sister talk about a difficult day with my mother, I would remind myself that I had a role, too. It wasn't the same, but just as important for maintaining the quality of life we wanted for our mother in her last few lucid years. But it affected me, too. For those meals, her apartment, her safety, I was giving up something on my end. It started with eliminating things most would consider luxuries...Pilates classes, a date out with my husband, or new clothes. Then those sacrifices became bigger, like repairs that had to be done on the house and car.

Until it became too much. And all of a sudden, I felt the weight of the world on my shoulders. The financial costs and management of her life were taking over mine. The stress of my role as caregiver began bringing me to tears almost every day, not to mention the emotional stress of losing the mother I loved, piece by piece. Friends and relatives didn't get it...what could possibly be that bad when you aren't even in the same city? How could you even be that involved? Be thankful you don't have to do what your sister does!

But they didn't see my beautiful, young, vibrant mother stripped of her intelligence and spirit, her ability to use a fork and spoon, or the memories of her own children. That lovely lady you saw in the elevator going down to the dining hall? She's not a visitor or the daughter of a patient, she is a resident who just happens to be 20 years younger, ten times more physically fit, but incredibly less lucid. It gets incredibly hard to separate that shell you see now from the person you knew before.

Faced with a tough decision, I pictured my mother in her trendy clothes, hip haircut, and practically wrinkle-free face, living with people who could barely lift their heads, were bed ridden, or couldn't hold their bladder. It didn't make sense. Who was I to say that Mom had to live that way, because I couldn't afford to help her anymore? What did that say about my character? What did that say about what sort of daughter I was? I struggled with the decision (and the payments), much longer than I should have. Anyone who has had to make a similar decision about putting their parent into care for any reason will know what I'm talking about.

Finally, I called my sister and broke down. I couldn't do it anymore; it was making my quality of life and emotional state too difficult; the strain was too hard. Yes, I was choosing me over my mom; I'd chosen my mom for many years. I was proud and happy to do it, but it was time for a change. There, I said it. The decision was made, and I felt hideous in the moment. But over time, relieved. It was a scary step, but much needed.

In truth, it was time anyway. Mom couldn't hold her bladder either, among many other issues. She needed the extra care. And she moved on, never realizing there had been any other way. The day she moved into the nursing level room (imagine moving from a cute apartment of your own, decorated just the way you like, to a hospital room with a bedridden roommate), she immediately forgot she'd lived anywhere else, and was getting the care she needed, and more.

But where did that leave me as a caregiver, as a daughter? Back at square one again. The useless sister. The one who doesn't call, doesn't visit, and doesn't even contribute financially to the care of someone she loves. Every day I think about my mom and my sister, and what they are doing, and what I could be doing if I lived closer.

The truth of the matter is, I speak to my sister several times a week, and always about our mom. We discuss her care, what's going on with her, and jointly make decisions whenever we can, although realistically my sister takes the brunt of that. I hear what's going on in my mother's life, and I see pictures. (Mom has for years not known who I am, so she doesn't really “miss” me.)

I think about the Mom I used to know, the one whose voice chirped out over the phone lines when I called, excited to hear from me, and would gab for an hour. The Mom whose eyes lit up when she'd see me at the airport gate to pick her up for her yearly visit and want to head straight to the store to go bargain shopping. The Mom who made tollhouse chocolate chip cookies and spaghetti from the jar, because we loved it. The Mom who welcomed anyone and everyone into our home at the holidays, because feeling loved was more important than traditions. The Mom who cried with joy when I took her and my sister on a spontaneous trip to the beach when I knew she was getting bad, because it was her favorite place in the whole world.

I talk to my children about their grandmother, repeat anecdotes about her over and over until their roll their eyes. I serve up soup with her old soup tureen, wear her diamond and sapphire ring, read books to my children she read to me, and gaze at pictures of her above my desk as I type. She inspires so much of what I do, how I live, and how I love. I can't feel anything but happy about that. She may not recognize me anymore, nor I her, but she deserves the love and respect I can offer from afar.

And you know what? My dad sent us an incredible bottle of champagne to toast to my mom on that beach trip, because he's a gentleman who loves what his daughters do for their mother and the woman he too once knew. What a wonderful reminder of my other amazing parent, and how lucky my sister and I are to be part of a loving family. But I know tomorrow, something little will creep in, and I'll get worried and sad for my mom, or for my sister, and for myself. That's what Alzheimer's does to its people, and to those who care for them. It creeps in, and it steals. So when you see a caregiver, give her a hug and tell her she's doing a great job. Because they all are, no matter their role, and they need to hear it.

**Written by the dynamic duo, Morgan and Molly.

Macon Love

I graduated from a small, private college in Lynchburg, Virginia. At that time, there were about 750 women enrolled there. Yes, I said women. It was a women's college -- Randolph-Macon Woman's College. Some people think that it is crazy that I attended a single sex college. It was smaller than my high school, but when I went to visit it on the circuit of college visits, I knew that it was the place for me. Simply, it felt like home.

This past weekend, three of my four best friends from college visited from all over the country. We sat up every night talking. The kitchen table became our base. We had so much to say, that we found ourselves almost talking on top of each other, just to try to fit everything in. We laughed about old times. We cried when we talked about hard times and recent tragedies. We literally couldn't get enough of each other. One friend’s husband describes it best. He says that there is a bubble that forms when we get together. We are in our own world, our circle of trust. No one else understands our childish jokes. No one else gets the stories we tell. No one else gets the bond that was formed years ago, behind the red brick wall.

When we attended R-MWC, it was a requirement to live all four years in the campus dorms. You became fast friends with people, and then lived with them for the next four years. This close-knit community became part of your being, your soul. No one locked their doors. The hall was a place to hang out. You went to meals in the dining hall together and sat at the same tables, covered with pretty linens and glass tops. You could have walked into Main Hall, completely blindfolded, and taken a deep breath. In a nanosecond, you could locate yourself, just from the smell.

Going to a women's college is different than a coed school. Rules are different. When a guy enters the building to visit, you have to yell, “Man on the hall!” You can wear your pajamas to class, because really, there is no one to impress but the people who have seen you in those pajamas umpteen times before. You feel confident to speak out and speak up. You meet all types of women, not only from all over the United States, but from all over the world. There is a real, pure feeling of empowerment, that you can do anything you want. There were so many things to become involved in and learn from.

They were the best of times, and I have been very proud of my school. Recently, however, Randolph-Macon Woman's College began admitting men and changed its name to Randolph College. I won't get into all the stories and politics, but I will say that this change has been difficult to swallow. I have some anger about how it all happened. Last summer, when my nine year old son wanted to visit, I took him. I really tried to put on a positive face. While there, seeing the different name on the infamous brick wall or the pictures of men on brochures, I felt the anger brewing and boiling up from deep within me. It was like someone took something precious that you loved and tried to recreate it, but didn't get it remotely right. 

But whatever changed on campus didn't change within the ladies of Macon and our bonds with each other. Like our college song says,  “Sing of loyalty and love,” and that is exactly my experience. When you go to Macon, you create deep, unbreakable bonds. The ladies that I lived with, studied with, worked with, partied with, we all connected -- the ladies on 3^rd Webb, my crew at the Skeller, the basketball team, my Prime Time students with whom I did my Psychology project, the ladies I was in secret societies with, and my four best friends in “HWEET.” Though we all had separate relationships with our fellow classmates, but there was something bigger. Like a Momma that is holding the umbrella over her babies so that they know that they are loved and protected, that is the Macon Love.

Unfortunately, tragedy has struck our school and our friends twice this year. Not surprisingly, the women from R-MWC came together immediately to help. And I am not talking about the “here is a casserole, I am praying for you” kind of help. We--the women of R-MWC--have been and continue to work together to create legacies for the families and children left behind. We continue to ensure the families know that we are there for them, that their families get what they need, and that their babies know the amazing woman that their Mom was.

We all get caught up in our busy lives. Phone calls get pushed off, birthdays get forgotten, reunions are missed. I treasure the time that I got to spend this past weekend with my friends from R-MWC. I know that they have my back. But, I also know that everyone else at R-MWC does, too. I am sure that the people that know me, and even those that didn't, would rally to help if I needed it. And if, God forbid, something were to happen to me, the R-MWC women would have my husband's and my children's backs, too.

Randolph-Macon Woman's College opened at a time when people believed educating women was a dangerous thing. From the start, R-MWC stood out by offering women a top notch education in a four-year program. I am very proud to say that I was a part of that era. I am even more proud to say that the ladies that I know from Macon are just as top notch. Although I feel that the school we experienced is part of the past, what hasn’t changed is the love and dedication we have for our ladies of Macon. 



If you haven't watch the video that Melissa Bellitto put together click here, and watch it. Warning...if you are an alum, you will probably tear up. Top pic from a blog of another R-MWC alum.

Somebody That I Used to Know

I was just looking through some old photos of my mom with my sister and me when we were growing up. A notion struck me again that has come to me from time to time. The notion that sometimes I forget how wonderful she was because I get caught up in the way she is now. I know the old saying that we should live in the now, and I mostly agree with that statement. Don't worry about lost loves, old fights, the coulda, shoulda, woulda’s of life. But going through those old pictures helped me remember how I once saw her as a beautiful, kind, and powerful woman. And maybe it is a reminder that none of that really has changed.

This was not about wishing she was “that” person still, although I certainly have those days. Today it was about not thinking of my mom as days and moments filled with confusion, not remembering my name, not remembering her past, paperwork that has to be filled out on her behalf, or trying to translate whatever she is saying. Today was about the woman she was, that she still is, fresh again for the moment in my mind and heart.

She is the beautiful lady with the sweet voice. The mom who always had a hug or loving touch for me. The woman who cared so deeply for others. The intelligent woman who worked at a university, one of the best in the nation. The friend who laughed with me. The cultural attache who helped me to enjoy art and music and to see things in my own light. The mom who rarely, if ever, raised her voice, yet I knew when she meant business. The mom who read to me and rocked me and sang songs to me. That is the mom that I wanted to experience today.

As I scrolled through the pictures, something else struck me. In every candid photo with me, she was touching me. I realized that it had always been this way as I grew from a child to a woman. She held me in her arms on the first day we met, minutes after I was born. She helped me to not to fall off playground toys. She put an arm around me as she read to me. She tickled me and made me laugh. She fixed my skinned knees, which I had a lot of as a kid. When I fell she picked me up, both physically and emotionally. She was always there.

She touched me and kept me close when I needed it, but she also let me be me. I don't ever remember feeling that she was judgmental with me, although I am sure she was at times. I probably have blocked that out so that I can remember the times with her that I loved so much, and that is okay, especially now that she is different. I do remember her being frustrated with me, and she once told me that she had asked her own mother what to do about me. I had a lot of energy and when I cried, I cried big, but when I laughed, it was even bigger. I was very insistent about things. My grandmother told her that I was simply passionate. Passionate about my feelings, passionate about life and how I saw it and wanted it to be. I knew what I wanted and when I wanted it and that was just how I was.

I often think of that advice when I am frustrated with my own daughter. I am still a passionate person, and my daughter is even more so. My grandmother’s advice and my mother’s willingness to follow that advice and to allow me to be myself helped me to become a powerful woman. I will do the same for my daughter. We are powerful because we know what we like and it is not always what others like. We are strong enough to be comfortable with our likes and opinions and feelings. We are independent thinkers. Although I may not always express my views, I have them. My daughter, on the other hand, tells it as it is. She lets others know how she feels and what she likes. My girl and I believe that we can do just about anything on our own. If we aren't sure how, we figure it out or research it, or we ask for help, or we just make it up as we go, but we do it.

Like my mom. She drove cross country in her VW Karman Ghia in the early 60's. At that time this was unheard of for a young woman in her 20's to do. She was told over and over again, “You can't do that!” She didn't listen. She knew what she wanted to do and did it. My mom is smart, but she didn't always feel like it. She struggled in school, just as I did. We learn differently. We aren't conventional learners. We have to make many accommodations to do things. Simple instructions sometimes get boggled in our minds and we have to repeat them out loud to make sure we understand. We have to incorporate many of our senses in order to truly learn something.

My mom was able to graduate college, get her Masters in Education from the University of Virginia, and get her license in counseling, all despite her learning difficulties. It took a lot of work and a lot of help from those willing to get her there, but she made it. She was a teacher for 12 years, a mom, a volunteer. She headed breast cancer support groups. She ran a workshop for women trying to get back into the workforce after being at home for years. She helped them find out who they were and what they wanted to do, what they were passionate about. She worked in the Pain Management Center at the University of Virginia. She did counseling, biofeedback, and relaxation for those suffering from chronic pain. She volunteered and then worked at hospices. She never stopped learning. She read many books a month, she traveled, she took art classes, did yoga, and met with friends in many different types of group activities.

She was always a kind soul. She gave off a sense of peace and zen. My friends said they loved coming to our house because it was always so peaceful as compared to theirs. She opened up her doors and her dinner table to whomever needed it. There were many Thanksgivings and Christmases when we had friends or acquaintances at the table - the kids who couldn't afford to fly home at breaks in college, the Japanese students who had never experienced Thanksgiving in America, the friend whose family couldn't afford and didn't celebrate these holidays. They all were welcome at our table.

Her memories of those days are mostly gone. There are no more words of wisdom from her mother to be passed along to me. No more job at a prestigious university. No more stories of her experiences to provide some insight to her own daughter. No more drives listening to classical music piped in from NPR. Those memories have not been forgotten by me. Today I was able to remember the woman that she once was and really still is. She is still beautiful. She is still a caring soul. She still teaches me lessons, albeit in a different way. Today didn't take me to a place of wishing, wanting that woman that once was. Instead I reveled in her knowledge, her power, and her peace.

I found the following passage, written in my mom's handwriting, that I keep close to heart.

May your soul be at rest.

May your heart remain open.

May you realize your own true nature.

May you be healed.

May you be a source of healing for the world.

May your heart remain open.

~Zen Prayer

This truly fits my mom to a “t.” She has lived this prayer and has passed it along to me. May we each find comfort when we need it, just as I did today, reminiscing about the amazing woman that I call Mom.