Dementia: Piece by Piece by Day by Day

Hello everyone and a happy 2018 to all of you! I hope that this year will bring you nothing but amazing things and all the happiness you are searching for. It has been a very blessed yet stressful time here for us. While it has been wonderful having the entire family for the holidays and making memories each day, it has also taken an emotional, physical and mental toll on all of us as daddy still needs a lot of care. I will be honest, I was never prepared to take care of someone with dementia. It isn't something, I don't think, that you can prepare for. You have to grow up a lot. I mean, I am 34 years old, but I still feel as though this circumstance has pushed me to grow up faster. As a child, you never expect to have to take care of your parent. They are the ones that are suppose to live forever and take care of you. So when the roles are reversed, you have this feeling of fear and obligation both and it is hard to explain. They have taken care of you your whole life. From helping feed you, walking you to the bathroom, cleaning you up and putting you to bed. Now, you find yourself in what seems an alternative universe doing the same for them. It is hard to watch someone you love and admire, who has always been healthy, slowly start to slip into a state of helplessness. You struggle between being in denial and acceptance, yet never fully committing to either. I have never been more exhausted mentally, physically and emotionally in my life. Every time I hear daddy's bedroom door open at night, I wake up to make sure he is okay, or to make sure he doesn't somehow wander down stairs and out the door. I sleep maybe 3-4 hours a night which is nowhere near the 9-10 I used to get. I listen to and answer the same questions over and over again and hear him using my mom's name repeatedly (she passed away in 2005 and I haven't heard him say her name in years). That in itself breaks me emotionally. Some days he knows my name, some days it takes him just a minute to remember. He doesn't know a lot about me anymore. He thinks I have lived places I haven't and done things I have never done. He doesn't know where he is most of the time and sometimes talks as though he is back in the military. I of course play along with a lot as we are not suppose to tell him he is wrong as not to frustrate or confuse him further. However, there is nothing we can do to calm our frustrations or stress or pain. It hurt when mama passed away, it hurt like hell. We will never get over it. However with her, we lost her all at once, and with daddy we are losing him piece by piece. I don't know which is harder, neither are easy. I hate both reasons. The best way I can describe taking care of a dementia patient is being in a relationship that you know will end and there is nothing you can do to stop it. You spend every day with this person, loving them and taking care of them. You have a past with them, but they are slowly forgetting why they are with you and wanting to move on. You know the break up is coming and that one day, they will not remember you and you will have to pass them on the street as a stranger, but knowing they were so much more to you. And it is the hardest thing to realize, that no matter what you do, you can't make them stay. So you find yourself taking more pictures than usual and video taping every good moment so you too won't forget. You hang on to every little thing knowing that one day, when they are gone, they will be the big things. It's scary. I am terrified. But he is still here. I can't anticipate the worst because I will miss the best. If I focus on what will happen, I will not experience what is happening now. It is a game of tug of war and I don't know if I am strong enough to win at times. I just keep pulling, pushing through the pain of the rope burn as the rope occasionally slides faster than I expect and I have to hold on for dear life. But I am thankful he is still here. Regardless of what name he calls me or what state he thinks we live in, I can still talk to him and hug him and tell him I love him. I won't take these moments for granted, because despite the exhaustion, I have never wanted to stay awake longer in my life. 

Long Time No Post: Let's Catch Up

Well hello everyone! Long time no post, eh? I have actually had a few people message me asking me if I was okay or when I would be posting again. I guess we have some catching up to do.

My last blog was a poem I wrote concerning dementia that had developed in my daddy. It has been slowly getting worse over the past six months and everything kind of came to a climactic scene a few weeks ago. Leading up to this, daddy's memory has slowly been on the decline. He would forget birthdays, repeat things in conversation more than once, and even call me back to back to back forgetting we had just spoken. He then began calling me and asking me where everyone was or telling me that he hadn't seen anyone in the family for weeks, which wasn't true as my sister and brother took turns going over every day along with the rest of my family seeing him during the week. He would tell me of things that never happened and would make no sense when we spoke. Fast forward to two weeks ago when I received a call on my phone that showed up "Daddy", but when I answered, it was a police officer on the phone telling me that daddy had wandered out of the house to a neighbors telling them that his house had been broken into the previous day and to call the police. Of course that wasn't true, but the neighbors called anyway knowing daddy was not in his right mind. When the police showed up, daddy was wearing two different colored shoes, a neck tie with his pajamas and was very disoriented. He couldn't recall going to the neighbors nor what had happened. We had discussed daddy moving in with my sister before, but this time my sister took him from the house the night of the incident and he has been living with her ever since.

As most of you know, I live in Florida and my family along with daddy live in Tennessee. I had planned to fly home for Christmas on December the 21st and stay until the 26th, however when I found out of daddy's progressing condition, my amazing friend Sarah bought a ticket for me to fly home sooner on December 7th and stay until the 26th. Though when I arrived at the airport and saw the condition my father was in, it changed my plans completely. It is one thing to talk to someone on the phone and hear them, it is another to see it and experience it in person. I was in shock to see how frail my once muscular father was and to hear the confusion and watching him have to be helped when walking. Over the next few days, I saw that he needed help to the bathroom, dressing and with every day cleanliness and eating. We did take him to the doctor because I wanted every test run that they had to see if there was anything that could be done to slow the process. They did many blood work tests as well as a chest x-ray on him. Daddy couldn't even sign his name nor speak full sensical sentences in the first days of my arrival. That night we found out that daddy's blood work was normal but he was in the onsets of pneumonia. They prescribed him an antibiotic and also a medicine that is suppose to help with the beginnings of dementia. We began giving him those the next day and literally over the following week we saw a large change in him. He still forgets things and is non-sensical at times, but he improved much from when I first arrived. The biggest thing is he wanders at night around in his room or the hallway upstairs. We end up having to get up with him a few times a night to make sure he is okay and get him back to bed. Which led me to a decision...

I made the hard decision to move back home to help take care of daddy. I don't want to miss these times and I don't want to regret not being here for him and my family. I was in Florida when my mama passed away in 2005 and I don't want that guilt again. Daddy deserves love and so much care and I want to be here to give him that along with my amazing family. I am staying in Tennessee until January 18th, then flying back to Florida to pack my stuff and moving back to Tennessee to stay until further notice as of the end of January. I never thought I would be in this position but when it came down to it, the world will always be there, I am young, I have many chapters left to write and I need to see this one through. My daddy needs me. And I need him. This is where I need to be and I feel in my heart this is the best decision I could make. I know life will get harder and harder and so will the decisions. I am exhausted mentally, emotionally and physically...but I wouldn't change it. I get more time with daddy. More memories. More hugs. And that is all I could ever ask for. So for those who send out good vibes or pray, please do so. My family has a long road ahead of us and we need all the wisdom and strength we can get. But especially send them out to my daddy. I love you guys and really appreciate you following me on all my journeys and stories. I will try to be better with posting and keep everyone updated with my life. Happy holidays to all!

You Can't Have Him - (For My Daddy)

You came in like a thief in the night. Taking nearly everything in a mind that was right.

The strong, healthy man that we have always known, has now become one of skin and bone. Why did you do this? You weren't asked to be here. We never invited you. Stop staying so near. For thirty four years this man has been my life. He has been my hero, my friend and my comfort in strife. You see, you don't know him like I do. You don't understand the memories and what we've been through. You don't care that he has a heartbroken family. You captured his mind, we need him free! He needs to be here, from body to mind. We aren't done knowing him yet, there's more for us to find. So many more Christmas photos to take, birthdays to celebrate, memories to make. He is suppose to always remember my face. He is suppose to be aware of every person and place. You made it your job to try and take him away. But we won't let you without a fight. We will do everything to make him stay. The thing is, dementia, we will love him through the worst. No, you can't have him, because we had him first. 

If You Don't Fetch And Roll Over...

Never beg for love. Don't do it. Don't beg for someone to love you are be with you or spend time with you. Never beg for their time or their affection. Don't beg for their commitment and attention. You should never, ever have to beg someone who loves you to stay with you. You should never have to chase someone because the one who loves you won't run. The one who loves you, really loves you, would never let you beg because they will give themselves and their time freely. You are not a dog. You don't roll over on command or play fetch. Then why would you beg? It is degrading and it is demeaning and it is not human. Stop letting yourself be disrespected. Begging is disrespecting yourself. It means you have to have it, that you can't live without it. Lies. You lived without them before and you will live after them. Begging means you do something with a sense of urgency. It also means that you are asking permission for something. What exactly are you asking permission for? Say this out loud: "I am asking for your permission to stay with me. I really need you to stay because I am a beggar (which just so you know, means that you are impoverished with no resources to keep you going)" So is that what you have reduced yourself to? Being a beggar for love and affection? NO. You *clap* Are *clap* Not *clap* A *clap* Dog *clap* Are you so scared of being alone that you will accept being treated as less than you are? That you will get on your knees and beg someone to love you? Will you seriously stay in a horrible relationship because you think that being hurt and disrespected is better than being alone? Think about that. You are literally begging someone who doesn't love you to stay with you because you don't want to be alone. Yeah....about that. Listen to me, you are worth so much more than that. Get up off your knees and stand your ground. Use your voice to scream your worth instead of using it to beg. Be the first to walk away. Show them your feet are used for walking not for chasing. Your hands are used to pick out something nice for yourself, not to grab them and make them stay. Your self worth and your self respect belong to you and no one else. If you are going to beg, use the phrase, "I beg to differ. I absolutely DO deserve to be treated amazing. And I beg your pardon, but you have no right to make me feel the way you do." If you must beg, do it like that. Not to make someone stay. Not to make someone give you affection or love. But to make them realize that you won't allow them to reduce you to your knees or to tears or to disrespectful begging. You are strong. You are powerful. You are brave. You are amazing. You are beautiful. You are not a dog. The only obedience you owe is to yourself. 

MAYDAY!

If you are like me, you cannot stand the thought of not being in control. Whether it is your life, your finances, circumstances around you...whatever it may be. I like knowing that I am the one behind the drivers wheel of my life. That I am the pilot of my aircraft. That I am the conductor of my little engine that could, or could not, or tried really damn hard. However, as of lately, I have felt as though my life is spiraling out of control. I am heading for a telephone pole, quickly losing altitude and chugging toward a bridge that is out. As long as I can remember, I have had a job. And if I didn't, I found one rather quickly so there wasn't a huge lapse. However this time, I am having a very hard time bouncing back. I tried something new, it didn't work so I decided to move on. And it has been the hardest thing of my life getting back on my feet. I am like a turtle who has been knocked over and is writhing back and forth in an attempt to get back to standing and I just can't make it happen. Luckily, I have friends who will pick me up out of the middle of the road so I at least don't get run over. Sometimes they help me back on my feet but then a car comes whizzing by and tips me just enough to where I roll back over. Lately, the words I utter the most are "Well, damn". In addition to this, my father's memory is fading fast. Over the past six months we have started losing him. He doesn't know a lot of things any more and can't remember the simple information. He has forgotten my birthday, that I no longer live in Tennessee and at times, who I am. We will be talking on the phone and he will ask "Who's this again?" Every time, my heart shatters and the pieces sink to the furthest depths of my stomach. And there is nothing we can do. I hate that. I hate that I am not in control. I hate that I can't make him better. I hate dementia. It is the most frustrating and terrifying thing I have ever been through. And I can't make it stop. Continuing, my roommate that I have lived with for four years has decided to move out into a different place when our lease is up in February. I don't want him to go, but I can't make him stay. He has to do what is best for him, and I understand that. But it is a big change for me. One I was definitely not ready for. It feels like my life is completely changing all at once and I am powerless to slow it down. I am screaming into a small radio, "MAYDAY! MAYDAY! I AM GOING DOWN!!" but no one is there to answer the call. So I frantically push every button and pull on every lever to at least give myself a few more moments before impending doom. I loathe not being in control. It is probably one of my worst attributes. I feel like when I am in control, I can determine exactly what happens and how my life will work out. I become my own fate and destiny. I become my own god. But as I have learned recently, it doesn't work that way. Sometimes, we have to let go and let something else take the wheel. Be it God or the universe or karma. It isn't the most ideal solution, but I guess at times we don't really have a choice. And that scares the shit out of me. I know that we are still in part in charge of what direction our life takes, but as of right now, mine is taking me on a completely different path where my GPS doesn't work and I have no cell service. I am having to completely go on faith at this point and hope that I will end up where I'm meant to be and things will turn out the way they are suppose to. I've screamed and cried a lot. It helps some. I write....so much. It helps even more. I am not good with feelings or emotions or vulnerability. I always thought it showed weakness. But I guess, in a way, it takes a lot more strength to showcase those things. I will be okay. I know I will. It is just when you are in the moment and you are careening out of the sky you panic. I do believe everything happens for a reason. Maybe what is happening now is only preparing me for something better. Maybe things have to be lost for other things to be gained. Maybe I have to be humbled before I can be a hero. Maybe I have to stop trying to save the world and try to save myself. Maybe, just maybe, losing control is the only way I can stay on track. That's a thought....

No Matter How You Cut The Turkey...

First and foremost, HAPPY THANKSGIVING Y'ALL!! I hope everyone has spent their day in the presence of family, friends and loved ones. I know that at times it is hard to find the things to be thankful for. Life happens. Things get in the way of our plan for happiness. Obstacles pop up on our road to success. We ride that boat all the way to our preferred destination only to step off the Mayflower in our fancy buckled shoes onto sinking ground. Trust me, I know what it is like to sit around the table as each person begins telling what they are thankful for and having to mentally prepare and rehearse an answer so I don't sound completely ungrateful. But no matter how you cut the turkey, there is always something to be thankful for. That is after all what Thanksgiving is all about; giving thanks, thanks for giving, thanks giving, thanks....giving. There are times when I have to take a look around and notice how blessed I really am. I woke up this morning. I was able to listen to music while I put on clothes in my condo that I am able to pay for. I walked into the living room on my legs and feet to sit down and watch the Macy's Day Parade and National Dog Show with my eyes. I then was able to get in a car and go to my best friend's family's house for a home cooked meal and socialization. It is all about perspectives. Some people or their loved ones didn't wake up this morning. There are those who cannot hear or see no matter how badly they want to. Some are unable to walk or use their arms. Many people don't have a roof over their head or clean clothes to change into each day. Others have no mode of transportation or food readily available. Some people have no family or friends to spend holidays with. So yeah, I may have inconveniences, but I don't have impossibilities. I count myself extremely blessed. Not lucky, blessed. Sure, things bother me. Things frustrate me. Things don't go my way. I have hardships and days things go completely wrong and stress fills my life more often than not, but man....I am really blessed when you get down to the cranberries and gravy of it all. I take it for granted a lot. I know I do. I will be the first to admit that I definitely take a lot of things for granted in my life. It isn't until I step back and look at the big picture that I start to really see. You can look at things all you want, but until you actually see what is happening, you aren't taking it all in. You can hear things, but until you listen you aren't absorbing it. Thanksgiving is a day for thanks, yes. But remember, there are 364 other days where thanks should be given as well. Not only thanks, but giving. There are so many people who are less fortunate than we are. For us to truly understand the meaning of gratitude, we need to understand what it means to have nothing. I have given small snacks and what little money I have to homeless human beings quite a few times. I am not saying that to be all high and mighty, I am saying that because they are some of the most grateful people you will ever meet. And at times I found myself selfish. "If I give them a dollar then I will only have this much now"...seriously? That dollar to them is like a hundred to me. That small bag of chips to them is like a buffet to me. I have even tried to give money to someone before and she turned it down saying all she wanted was someone to talk to. So I did. For nearly an hour outside of a 7-11 here in Orlando. I was like....wow. I take so much for granted. I can text any one of my friends at any time and have someone to be there for me. I can walk into a restaurant at any time and get what I want. I can access an ATM and have money at my disposal any moment. When it comes down to it, the less fortunate are just like us. They want to be loved and understood and cared for. Take every opportunity to use your thanks for giving. Use your giving for thanks. Because the truth of the matter is, Thanksgiving isn't just a holiday, it's a handbook. Keep dishing out kindness and always ask for seconds. 

Clap Clap Clap Clap

I had never actually sat down and fully watched the entire series of "FRIENDS" until recently. Sure, I had seen episodes here and there and knew the basic information, plot etc, but never watched the complete series in succession. As I watched, I learned that everything from the theme song down to the characters was my life. No, I don't live in NYC in an apartment and sip coffee in a shop daily (though I do sit on my couch and drink coffee daily so I mean, the similarities are there), but personality and life wise....I was watching me. Take the theme song for example, "So no one told you life was going to be this way *clap clap clap clap*"....first of all, if you didn't sing that in your head and actually do the claps, do you even really experience this show fully? But seriously, we all have this image in our heads of what life is going to be. And then, life happens. Actually happens. And we are left standing or sitting or sometimes curled up in a ball rocking back and forth screaming, "NO ONE TOLD ME LIFE WAS GOING TO BE THIS WAY!!!!" If you have not, kudos. And you are also a liar. I know that I either think, say or yell this phrase into the sky at least once a week. Why? Because sometimes, my life is a joke, I am broke and my love life is totally DOA. I seriously evaluate what exactly is happening and where exactly I went wrong. For instance, right now, my life is in a snowball effect of bad things happening. I have cried a few times, but now all I can do is laugh, because the crying sure isn't helping. May as well smile my way through it. I am in between jobs so basically, the broke thing, completely relevant. There were 6 consecutive days I ate ramen noodles and for dessert had leftover fortune cookies from God knows when but I know one of those places went out of business years ago. For fiber, I ate the fortune itself also. Love life? I have to Google exactly what that is because it has been so long. It isn't only DOA, it is a DNR with an RIP. But hey, I have myself and I am pretty funny and romantic and own every Disney movie so...who is the real winner here? Indeed, I feel stuck in second gear and as 2018 approaches, I can confidently say it has definitely not been my day, week, month or year. In fact, while writing this, I spilled my glass of milk, so it hasn't really been my minute or second either. But no use crying over it. Heh. Anywho, yes...I am the FRIENDS theme song to an exact description. Depending on the day, I am also any one of the six characters. For instance, today...I am definitely a Ross. I am overdramatic and watching romance movies pining over someone that may or may not have feelings for me as well. Yesterday, I was Phoebe. I was all over the place not making any sense except to myself while my roomie just kept looking at me like I had officially went off the deep end (he was the Chandler at that point). There are days I myself am Chandler. I overanalyze other people's lives while trying to make it through on nothing but a dry sense of humor and puns. More often than not, I am Joey. I spend my days either talking about women, eating food or taking naps. I want to be an actor and become famous but have no earthly idea how to make that happen. So I audition for random roles and own the hell out of them. My friends sometimes have to loan me money and I say inappropriate things at least 99.6% of the time. On the days that I am not in the mood for bullshit, I am Monica. I use my boredom to become overly OCD and I clean up everything I can around me, except for my own life. I become super cynical and on the defense about everything. I feel as though no one understands me and that I will never be good enough. That is why I clean and make things look better, because in that moment, my life is a mess and I have no idea how to fix it. Then there are my Rachel days. Even though I have lived away from home for five years, I still have no idea how to be on my own. I was a daddy's girl (which I am totally okay with and will be until I am 95), but I have no sense of direction when it comes to where to go in life. I am naive and scared. But also courageous and strong. I am a huge conundrum and basically just make it all up as I go along. Regardless of who I am on what day, I am literally a whole cast of characters, living in a small apartment in the city of Orlando, drinking way too much coffee, completely clueless as to what exactly I am doing and looking for someone to be there for me when the rain starts to pour. I will say, I am lucky in the sense I do have those people. The ones who will dance with me in a fountain sporting umbrellas laughing at life because really, what else can we do? I think we all have a little Central Perk in us. And we go home to our purple walls and yellow framed peepholes. And I am totally okay with that. 

Clap. Clap. Clap. Clap.