Almost two weeks gone

I miss him. I didn't expect to miss him, but I do.

There are things that I would have told him if he were still here. Things that aren't important, but that I could have told him. 

I chose my words carefully the last few years. One of Daddy's Parkinson's symptoms was anxiety. I never wanted to add to that anxiety, so I chose my words very carefully. 

We talked about the weather. A lot.

I guess that aside from death being such an unforgiving separation, the timing of it was particularly harsh. We buried Daddy on February 12, the day before my parents were engaged. Two days before Valentine's Day. Six days before Momma and Daddy's 44th anniversary (yes, their engagement was a whopping five days long). Twelve days before my birthday.

This will be the first year I don't get a card from my daddy.

Last year, he sent me a card. I got my feelings hurt because Momma didn't sign it or send one herself. That seems particularly stupid of me now. But last year, I got this card. It was a super sweet "Happy Birthday, Daughter" card that he picked out at the store. 

Daddy wrote on the front of the card. He did it all by himself. I couldn't read what he wrote except for the part where he loved me.

I always got the message that he loved me.

I've been looking for that card all day long. I know I didn't throw it away, but I can't find it.

Tomorrow is going to be a very lonely day if I can't find a birthday card from my daddy.

*******************************************************

I've been going through old pictures. The wedding album from my first marriage has some of my favorite pictures of me and Daddy. 

I was so young.

He was so healthy.

We were having such a good time.

Dr. Sclater played the same arrangement of "Amazing Grace" at my wedding that he did at Daddy's memorial service.

It was 14 years ago. Only six years before Daddy's diagnosis. 

It doesn't seem like that long ago.

In his passing

We are home. My boys are sleeping in their own beds for the first time in two weeks. Two of the four of us have a stomach bug. The dogs are somewhat happy to see us, but not altogether glad to be sharing the leather sofa again. I've opened the mail, thanked the neighbor who cared for the pups, and made a list of the appointments I need to reschedule.

Life is back to normal.

Except that this past Saturday, we buried my daddy.

Daddy died sometime within a half hour of me writing the post, "It's Time." In fact, if I hadn't written it and had gone on to the hospital, I would have been there when he passed.

I don't think he wanted that though. He took his last breath while my momma had closed her eyes for a much needed cat nap. She slept for about 20 minutes and woke up to find that he had stopped breathing.

Thank God.

My daddy has been healed. He no longer suffers from Parkinson's Disease. His mind is no longer tortured with dementia.

At least, that is the attitude I try to take.

**********************

I haven't cried much. The day of his service was a day I spent being proud of him. His casket was draped in the American flag, and Taps was to be played at the end of the graveside service. Granted, the soldier didn't check his horn before he got there, and it didn't work, leaving us all sitting in extended awkward silence, but I was still proud. Proud of my daddy, the Vietnam veteran.

The front parking lot of the church was almost full when we arrived for the memorial service. There were friends there from my high school days. There was a life long friend who drove in from Nashville and surprised me. There were people who helped raise me in that church. There were more people than I could have imagined - who all came to honor the man I was lucky enough to claim as my daddy.

The music was beyond perfect. New Orleans style jazz arranged by my professor - rather, my dear friend. He and his wife provided all the music for the service. The solo was the jazz arrangement of Amazing Grace that my daddy loved. We marched out of the sanctuary to the most fabulous arrangement of When the Saints Go Marching In that you will ever hear. That Daddy didn't get to hear.

I keep expecting to have a break down. Be angry. Be devastated. Be inconsolable.

It hasn't happened yet.

*********************************************************

Sitting in the room with my dead father was the hardest thing I've ever had to do, I think. I wanted to run. I wanted to vomit. I wanted to cry. I wanted to be anywhere but there, but at the same time, I wouldn't have been anywhere but right there with my family.

His eyes were clear and focused for the first time since I saw him in hospice. I couldn't stop staring at them, wondering what it was that he saw as he took his last breath.

It came time to leave him, and I hadn't touched him or spoken to him. He was dead. I didn't see much point. But something kept me from leaving without telling him good bye one last time.

I walked back to the bed and leaned over to kiss his head. His skin was cool. I let my tears fall, and I didn't wipe them from his face.

It's time

Have you ever watched someone die? I don't mean necessarily the "last breath," but more the "last days."

I thought I had. There was my Uncle Dadie, who I watched have a rapid decline during my third semester of college. He died days before my final exams. I remember the exaggerated bone structure of his face and how it looked like his skin was so stretched over those bones that he couldn't close his mouth.

I remember my grandmother and how it seemed as though you could see both bones in her forearms and every detail in her shoulders. I remember how shallow her breathing became.

I remember my granddaddy. My granddaddy could still speak the last time I saw him. He grabbed my hand and begged me not to go. He was scared, he said, and he wanted me to stay with him.

Truth be told, I couldn't have taken it if my daddy had done that to me, and I think that is probably the deeper reason that I didn't come right away.

I don't have to worry about that though. My daddy can no longer speak.

He can't eat.

He can't drink.

He can't even blink.

They can't get his blood pressure to register.

There is absolutely no logical reason that he should be alive, and yet he still instinctively fights. I am both proud of him and slightly exasperated at the same time.

It is exhausting to watch someone you love die. You have to still live while doing it. Momma still has to communicate with the seemingly millions of people who want to know about Daddy.

She still has to eat and drink.

She still has to take her chemo everyday.

She still feels like she has to be the momma, when in reality, her husband is dying.

She is losing her soul mate. The absolute love of her life. Her very best friend.

As much as I'm going to miss my daddy, the hardest part of this is watching my momma hurt and not be able to help her. She loves him so much, and it didn't matter what state he was in - she just wanted him to be with her.

We are all tired. I know Daddy is the most tired of all.

He looks like a skeleton with skin. His unblinking eyes are so deep in their sockets. It's time.

It's time, Daddy.

Change of mind, not heart

I changed my mind.

Probably not a surprise, but I packed up the boys on Sunday and headed to Tennessee. It wasn't my heart that changed. I still feel as though every time I've said good bye to Daddy in the past few years, that I've been saying good bye for good. In a way, I have been because each time I see him, more of him has been gone.

However, the longer he has held on, the harder it became to not be here, so here I am. Exhausted both physically and emotionally, but present.

There is so much to say, but nothing I'm quite ready to share. Just holding these moments close to my heart for now.

From 2007, here is a little something to get to know my daddy better.

************************************************

My daddy has been on my mind. The transition he and Momma have recently made from California to Tennessee has not been easy on either of them. But Daddy is happier now. He sleeps better. He eats better. The anxiety doesn't overtake him everyday. Saying "better than in California" is hardly saying much, but it's the only comparison to make.

Still though, his life is defined by how well his medications work that day. Forgetting to take something means that it will be a bad day. Waking up at 3:00 AM and thinking it is 6:00 AM, thereby eating breakfast and taking your 7:00 AM medications at 4:00 AM means, that it will be a bad day.

A bad day: A day in which anxiety and nervousness overtake Daddy's ability to function. Eating is out of the question. Dressing himself is out of the question. Sitting down or getting up by himself is out of the question. Sleeping that night will most likely be out of the question.

While in California, my momma consistently told me that I didn't understand what he was really like because I wasn't there from day to day. "You've just caught him on a bad day," she would say when I would call him on the phone and he wouldn't know who I was.

Now that he is in Tennessee, both my mother and my brother give me reports on him. My momma's reports are tempered in hope, or possibly stubbornness. A bad day can possibly be followed by a good day. A bad day can possibly be fixed or prevented with medication. A bad day is just that - a bad day. In my momma's voice you can hear her defiance against the Parkinson's and Alzheimer's. You can hear her missing her husband above all else.

My brother's reports are more to the point. How much weight Dad has lost. How many times Dad got lost in the house. How little Dad is sleeping. How I need to be coming to see Dad soon before too much more of him slips away. In my brother's voice you can hear frustration. I think that I hear resolve some days for being the chosen one to have to deal with it. I know I hear strength.

But me. My firsthand information only comes from too short visits and phone calls. Daddy perks up on the phone with me. I know he is trying to put on his best. I have done the same for him all of my life. Even on a bad day, he will get on the phone with me and tell me that he is making it. His voice cracking and shaking with the Parkinson's induced anxiety, "I'm getting by, Sweetheart. Don't worry about your Daddy," he'll tell me.

Today, Guy and I went to see a lawyer about drafting our wills and other legal documents. As we went through the questionnaire with her about our assets, insurance, and such, we came to the section about "what if we both meet an untimely death or are incapacitated simultaneously?"

Who would we want managing our finances while we laid in the hospital in our comas? In a shared room of course, with mourners, secret twins, and a dramatic soap opera soundtrack in the background.

I opened my mouth to say, "My daddy."

When all that came out was an audible squeak, I looked at Guy, and he said, "Schmoopie, you're crying."

And I was. Right there in the lawyer's office. I started to cry and I had a hard time stopping.

All of the things I used to rely on my Daddy to be, he can't be now, and all of a sudden, I missed him desperately. I wanted his advice on selling my house. I wanted his advice on buying a new car. I want his advice at least once a week, and it is not available anymore. And I saw my mother and how much she misses him in a whole new light.

Asking for his opinion or for help causes his anxiety to go through the roof. There is also the factor that whatever answer he might give you to your question was valid most likely 30 years ago. Or it is to an entirely different question. The main problem though is that it brings on the anxiety that is so bad for him. So I do not ask.

The last time I was with my daddy was in December. We were visiting for Christmas and I lost the baby while we were there. I didn't want my parents to come up to the hospital because I knew that would send Daddy right over the top. The next day though, I wanted him. I wanted him to comfort me, to hug me, and to be my daddy. So I requested a snack. Our snack. Peanut butter and Nilla wafers. He fixed me three little sandwiches and brought them back to the bedroom. He sat clumsily on the edge of the bed and put his stiff bony arm around my shoulders and patted. He patted and said, "I love you, Babe."


Parkinson's and Alzheimer's will never touch Daddy's heart.

Open letter to the hospice floor

Dear 9th Floor,

Later today, my daddy will be joining you. You don't know him, and unfortunately, you never will; he has been gone a long time.

He was a Southern lawyer. A good one, too. His office was downtown on the sixth floor and overlooked the atrium with a fountain and huge plants. I loved to visit him there. He kept candy on his desk to entice people to stop in for a hello when they walked past his door.

Always looking out for someone in need, Daddy was a mentor to countless lawyers who joined the firm after him, going as far as to invite the ones with no family to spend Christmas morning with us. Our table never had an empty chair for holidays or Sunday dinner.

Daddy is a Presbyterian Elder. He loved the structure and organization of the Presbyterian church. He was a staunch supporter of what he felt was God's will in the life of the church, and there wasn't a member there who didn't look up to him. As moderator of the session more than once, he held the utmost respect of the congregation.

But just when you thought he was satisfied being a leader and polity maker, he starts teaching Sunday School. In the two-year-old classroom. Those children loved Mr. Tom like nobody else could.

Daddy was always full of surprises.

Daddy pitched for the law firm's softball team. He played the alto sax. He was in charge of breakfast at our house. He loved English Mastiffs. He wished my momma would cut the biscuits bigger. He liked going to New Orleans. He really liked playing his John Phillip Sousa marches as loud as Momma would let him.

We used to go to the Jackson Mets games. I love baseball because of Daddy. When I was in the fifth grade, I was determined to play Little League. He signed me up. I was one of two girls in the league, and he never flinched. He helped me practice pitching, and he supported me the entire season. He might have even been a little disappointed when I didn't sign up again, but he didn't let me know it.

You might just hear Daddy ask you for a cookie while he is on your ward. The man loves sugar like nobody's business. Donuts, cookies, ice cream, Momma's pound cake - he would live on nothing but sugar and carbs if he could. He frequently got up during the night just to have a snack (little powdered donuts from the grocery store). There wasn't a Snickers bar that was safe within 100 feet of him, and he could find a Dairy Queen with his eyes closed in a town he had never been to before.

That is just a glimpse at the man you are caring for now. That is just a tiny bit of what I know about Daddy.

What I don't know about Daddy is how much he is aware of right now. I don't know if he hurts, if he is scared, if he knows that you are the hospice floor. I don't know if he knows that he will die soon.

You have to understand. That is what scares me. Not the passing of my daddy, because he has been so sick for so very long - I have prayed that God would make him whole again, even if the only way to do that was to take him. But I'm scared that he is scared and can't tell us.

So I'm counting on you, his nurses, his doctors. I'm counting on you not to call him "dead weight" when you have to move him, because he might still hear you and understand you. I'm counting on you to help him eat the few bites he can get down because he used to love food so much. I'm counting on you to keep him safe and take care of him just a little while longer.

He's somebody's husband. He's somebody's father. He's a father-in-law, a PawPaw, a G-Daddy, and a dear friend.

He's not just a man with Parkinson's. Please remember that while you are caring for him. You are caring for a man who has cared for so many others. You are caring for my daddy.

Sincerely,
His daughter

Parkinson's brothers

Disclaimer: My family can be weird. Shut up. So can yours. Yes, I'm about to tell you that I read important family news on my mother's blog. It's better than when I read it on her Facebook page.

This morning I was catching up on some blog reading, including my momma's blog. It's a good thing I did, because I learned some big news. My uncle has Parkinson's. My father's little brother has been diagnosed with Parkinson's. Just like my father.

My first thought was how horrible that is for him. Just in general.

Then I jumped to how horrible it is that he has watched my father's plummeting decline for the past six years. He has a good idea of what is in store for himself, and it isn't pretty. I think this would be a case of ignorance being bliss.

Finally, I jumped to the selfish thoughts. About heredity and genetics. Two brothers hit with the same disease at almost the exact same time in their lives? My mind jumps to my twitching leg and my recently diagnosed depression. Is the anxiety I battle a precursor? Because I know my father battled it. I fight many of the same battles I watched him succumb to as I grew up. The temper, the nervousness, the paranoia. I see myself in him so very much.

I had been convinced that my dad's illness was tied up to his chemical exposure in Vietnam. That it was completely environment that made this happen to his body. I guess we know now that's not the case. The obvious answer would be genetics, but then again, it could be toxins from when they were children. They have never lived in the same place as adults though.

I want my husband, who works in genetics research, to figure this out. Ironically, he'll probably be the first to tell me that trying to find a genetic link will just give us more questions rather than answers. Or something like that. Stupid science. Dumb genetic research.

Is there prevention? I guess that's the question that I really should be seeking an answer. It's worth a shot at the very least, and more than likely, any prevention is tied up tight within a healthy lifestyle that I should be living anyway.

Right now, today

Christopher has been baptized. Sunday, his Nana stood in front of the congregation with us and baptized her youngest grandson.

I honestly didn't think that we would get to see this day. I didn't think my mom would be here for this day.

My momma and I had good conversations last week. There is something about a daughter becoming a mother that makes the grandmother/mother and mother/daughter bond even stronger. I feel closer to my mother than I ever have before.

While we were talking last week, I realized that I've spent an awful lot of time and energy on being sad for my parents' health. Granted, they rarely get good news when they go to the doctor, but so far, neither of them have been told that they were going to die that same day.

Susan's post, A moment spent moping, really hit home. It's not just the patients who are angry at cancer or spend their time wishing for the "what could have been's" of a different diagnosis. As the daughter of an ovarian cancer patient and a Parkinson's patient, I do the exact same thing.

What this means is that I have spent the past six years mourning the loss of my parents over and over and over again. Every time there is a new diagnosis, I mourn.

That seems like a complete waste of time now.

Each day that I still have them is a gift.

In all honesty, it doesn't always feel that way. Each day that I still have my mother is a gift, but some of the days with Daddy are down right hard. I have so much anger for what has been taken from him and from us. It is harder to apply the "each day is a gift" to a disease which erodes my father's mind and body in waves of dust and huge chunks of his life.

But Momma.

Her scans are not clean. Her ca125 is rising again. She will start chemo again, maybe this fall.

And I can type that without crying. Finally.

Momma is still here. She is still fighting. She is still winning. Right now.

Every minute I spend thinking ahead at what she will miss is a minute I've spent not enjoying her while she's here.

She was here to meet my child. She was here to hold my child. She was here to baptize my child. All things that I had mourned the loss of in 2002 when she was diagnosed with stage 3B ovarian cancer.

Sure. My momma is going to die much sooner than I would like for her to, and we all know it. The knowing makes it hard. But would there be a time in my life when I wouldn't be devastated to lose her? She could be 97 years old and I would still be heartbroken when she passed.

So today I vow to stop mourning my parents before they are gone. It's not fair to them, and it's not good for me.

That also means, Momma, that you have to stop labeling all your stuff all the time too. I may love your pewter goblets, but I don't want them anytime soon.

Resigned

My parents are here. I couldn't wait for them to get here on Sunday. My poor momma started being pestered by me about 7:30 AM on Saturday. I started calling to see if they had left yet.

They were still in bed.

Sorry, Momma.

I haven't seen them since January. They arrived the day Christopher was born. I don't remember much of that visit. The whole first month of motherhood is sort of a blur to me now.

It is easy to forget from visit to visit how hard it is to see my daddy for the first day or two. It is easy for me to forget what Parkinson's has done to him.

It is hard not to be sad, and it is hard not to be angry.

Momma said today that I shouldn't feel guilty for not being there to help them or to spend some time with Daddy while it still counts. She reminded me that they chose to go to Tennessee. That's true. I wanted them to come here.

Still though, I feel like I don't have a right to complain. Like I should just be happy for the time I do get to have with them.

I am happy for the time I have with them. I'm so happy my momma is here - I want to let all the air out of her tires and hide her wallet so that she can't ever ever leave.

But Daddy makes me nervous. And I don't feel like a good daughter. I feel impatient and I feel angry that he isn't like he used to be. I want my son to know him how he used to be.

I had to tell Daddy today that I didn't want for him to carry Bird up or down the stairs. That it made me uncomfortable, and as his mother, I needed to make sure that he was safe. Daddy carrying him up and down the stairs isn't safe.

He didn't get mad. He didn't get his feelings hurt.

In a way, I think wanted him to. I didn't want him to be so resigned to Parkinson's that he understood my concerns and gave in so easily. It wasn't like him.

Then again, it was a relief not to have to fight him on it like we did over his car keys a few years ago.

He is resigned to this new way of life I suppose. I should be too.

But some days, I want him to fight harder. I want him to take on Parkinson's like he used to take on ambulance chasing lawyers. And I lecture him on his diet and urge him to exercise and pester him to get more tests and try new drugs.

He's tired I think.

I'm annoying I know.

And Parkinson's isn't a fair opponent. It plays dirty. It messes with his body and his mind. I'm just an outsider, not even with him on a daily basis, and yet I find it appropriate to be trying to force him into giving up refined sugar and caffeine. What the hell do I really know anyway?

He's just tired it seems.

I guess I would be too if I were him.

It's not fair to ask him to fight so hard in a battle where the winner is already determined with the diagnosis. But I wish he would. Fight harder that is.

Paper thin

My daddy is such a shell of who he used to be. He is so frail. So fragile.

His feelings have always been frail and fragile. He would be wounded if I chose to spend the night at a friend's house instead of staying home with him on a Friday night. Paper thin skin.

Now, his whole being is paper thin. His belt holds up his jeans only because it rests on his hip bones. Kissing his cheek feels like pressing my lips up to a piece of slate. Hugging him means hugging myself too after I have already wrapped your arms around him once.

He says things that are irrelevant. The once lightening quick trial lawyer thought processes have been detoured by disease. It is almost more heartbreaking when he catches himself and tells you to "disregard what I just said." I might rather him not realize it.

Distances and spacial relations are confused. He goes upstairs to bed because he always had before they moved into a ranch. He sometimes still lives in Mississippi or California. It stings my soul when he forgets that I'm too far away to drop by and see him.

His nerves are frayed. Knowing that he must be somewhere at a certain time causes stomach wrenching anxiety. He needs more time. He needs more flexibility. What if he freezes and cannot move for 30 minutes? What if he has an accident after he has gotten dressed? What if he disappoints us by not being ready?

What if he disappoints us by not being who he used to be?

I know this man. He used to be my father. It is a role that I can only help him fill now. I have to concoct situations in which he can still be the father. Ask for advice that I don't really need. Let him help me even though I can do it faster on my own. Make it be that our roles don't feel reversed all of the time.

Even though so much of him is gone, I still know this man. There is so much of him still left in his eyes. In his smile. In his laugh.

He is still, and always will be, my Daddy.