Letting Go-The daughter of a Parkinson's ... - Cure Parkinson's

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Letting Go-The daughter of a Parkinson's patient urges her Dad not to give up.

Maryt1967 profile image
14 Replies

Letting Go

2011

My heart feels like it has broken in two at the realization that my dad is gone. I say the words to myself, and cringe at their impact: “My dad is gone, and he’s never coming back.” I think this as I am looking straight at him, sitting up in his chair, a familiar pose; right foot propped on his left knee, wool sport socks, white sneakers, beige pants, white t-shirt with a navy collar and navy sleeves. The sticker that shows the strength of his Wal-Mart reading glasses still in place. I am always tempted to remove it, but figure he’s left it there for a reason, so I don’t.

He’s asked my family and me to stay in a motel again for this visit. He says he has too much medicine in the bathroom. I see just four vials when I go in, but again I don’t question him. Nobody ever questions Daddy; no one was ever allowed to. The medication is for Parkinson’s disease. Although he has not reached a point where he is unable to talk, walk, enjoy life, or has more than a minor tremor in his hands, he has accepted the fact that these things will eventually happen, and he is sitting and waiting for them to arrive, like some twisted FedEx delivery. It’s as if he has just chosen not to enjoy anything, which is more likely coming from the depression that stems from Parkinson’s. Men with Parkinson’s have a higher rate of depression than women with the disease. I read all the information on the Parkinson’s websites, so I know these things.

“Do you want to go to the beach?” I ask him. The TV is on a football game, no sound. His back is to me. “Maybe later” he says. His wife, my stepmother, glares at him, and like a well-trained puppy, he gets her point. I know she’s trying to get him to do something because I am there, but I will not force him to, if he is not up to it.

“We’ll go later, El, I’m feeling lousy right now.” I pretend I did not see the look she gave him.

“It’s okay, Daddy, just let me know. I am fine just sitting here with you.”

My mind drifts back to my childhood home. I used to dread my dad coming home because I knew I wouldn’t be doing enough.

“You were sitting on the couch when I left,” he’d say. “Wake up, you’re sleeping your life away,” was his morning statement.

He never understood that I had to stay close to home. I was the self-appointed watcher of the flock. I always knew where everyone was, when they’d be back, and what the mood was in the house. It was my role in the family. I wasn’t good at sports, never had a ton of friends, was an average student, but I always knew what was going on at home. Somebody had to.

I glance at my daughters, they are making faces at me and mouthing the words, “I’m so borrrred!” We had this talk in the car, on the seven-hour drive down. I had told them, “He’s your grandfather. You need to spend time with him. This Parkinson’s disease makes him feel badly all the time.” I wish they could know the man I grew up with. Sometimes, I tell them stories so they get a better idea of who he used to be.

“One time, in the middle of the night, I heard a really loud crash, and from my bedroom called for your granddad. When he came in, I told him I’d heard a crash, and he asked me if I wanted to go see what it was. We got into the station wagon, and drove one street over and saw a car on the side of the road that had been hit! The driver of the other car drove off, but Granddad and I followed the trail of oil to some man’s garage. Granddad called the police-we had helped them find the hit-and-run driver!”

“Another time, Granddad and I went sledding on Spanish Hill with our dog, Killer. Killer was kind of like a Chihuahua, really small! Granddad lost his hat going down the mountain and Killer went back and got it. After that, Granddad and I went to a Café and had hot chocolate with whipped cream on top! It was so cool!”

I tell them story after story of fun times with Dad, funny things he always said. The girls go back to reading and playing their Nintendo DS, as I continue recollecting.

Dad was my protector. One night, doing my laundry at a local laundromat, I was talking to a man I knew. He happened to have a huge dog with him, and we were standing at the entrance of the laundromat. My dad drove by on his motorcycle, looked down the street, saw me and waved. A few minutes later, he was there, as to a casual observer, it looked like a man with a huge dog was blocking me from leaving. I assured him I was okay. Another time, lying in my bed reading, I glanced up at my window and saw a big brown eye looking back at me. I threw the book at the window, called the police, and the next day my Dad put a security light up at my window. Later that day, a guy came into the store where I worked and said he knew where I lived. I looked at him-big brown eyes. I started to tremble, and just then Dad drove by again on his motorcycle, and I flagged him down, crying, telling him the man was just there.

My dad always made me feel safe. I knew nothing would go wrong when Dad was around.

My mind snaps back to the living room where we are all sitting. My daughter, Grace, is asking me a question. “What?”

“I said, will you ask Granddad if I can use their computer?”

“You ask him, honey.” They do not know this man, they have no relationship with him. He asks them what grade they are in, and tells them to ‘take care’ when they leave. He never says he loves them.

He tried the Deep Brain Stimulation surgery in 2007, and suffered a stroke. He was unconscious for about two weeks, and does not remember who was there to visit him. My youngest daughter asked me if she could go into the hospital room to sing “Jesus Loves Me” to Granddad. My stepmother was in the room when we entered. I told her what my little girl wanted to do, and felt tears form in my eyes as I saw my dad there with the tubes in his arms, in his stomach, the stitches from the surgery on his head. I did not cry, I did not even whimper, but the way my stepmother responded to me was like I was clawing at his chest hairs begging him not to ‘go to the light!’

“You can’t do that in here.” she told me.

I said, “You’re not in charge.” She went out and got a nurse and told the nurse to tell me I couldn’t have tears in my eyes in the room.

The nurse said, “I can’t tell her how to feel.” Then she looked at my daughter, pointed, and said, “Has she had all her shots?”

Infuriated, I left the room, but not before kissing my Dad on the head and telling him, “I’ll be back Daddy, I have to go. I love you.” My stepmother called me two days later and asked me to come back to the hospital. We’ve never spoken of that time again, and our relationship has never been the same.

1984

I am sixteen, about to board an airplane for the very first time in my life. We are going to live with Dad in Florida. My parents have separated, my dad has moved to Florida, leaving us behind. I have never been comfortable with my mother. It always seemed that going places with my mother was terrifying. Things would happen with her that would never happen with my dad around. We would go to baseball games; there’d be a bomb threat. We’d get a flat tire. With Dad, everything always seemed to go right, and if it didn’t, he’d fix it. He was security.

I can tell my mother is not happy about this move, that it was our idea, my sisters and I. Things go well for me in Florida, and I meet the girls who will remain my best friends throughout my life. Three sisters. Three sisters who can fight, then ten minutes later are sitting together watching TV, laughing. This amazes me. No silence, no grudge, no cold shoulder. I ask them how they do it. They look at me and laugh. I begin to realize the silence that haunts me is not how it is supposed to be.

Riding my bike home from their house one night, I pull in front of our house, and look in the front window. There is an old man sitting at the table, with a drawn face, gray hair, and a pale complexion. I’ve never seen this man before. As I walk closer to the window I realize it’s my dad.

“What the matter, Daddy?”

“Your mom went back to Pennsylvania.”

“She didn’t say goodbye?”

“No, she’s gone.”

She did not wait to say goodbye. She did not want to be here. She’d had enough.

“We’re getting divorced and you can decide who you want to live with.” He told my sisters and me as he walked outside to get some papers from his car.

It was not until years later that I understood my mother’s side of the story, or even heard the stories of the events as they unfolded to lead up to this moment.

The stories I heard, after she left, and after my sisters moved back to Pennsylvania with her, were the stories of the Chief of Police calling Daddy and telling him Mom’s bike was in front of this man’s apartment. This was a man Mom was supposed to be staying away from. My Dad drove his black truck to the apartment, put her bike in the back of it, brought it home, and put it on the porch. When my mom walked home, my Dad was sitting on the porch, and she told him her bike was stolen. “No it wasn’t,” he said, motioning with his head. It’s right there.” I heard about how the man’s wife came to our house at 2 a.m. and Daddy caught her before she could go upstairs, apparently to do something bad to my mother. How the same woman went to my Mom’s job and slapped her across the face. I heard how horribly it hurt for someone to be unfaithful to you, and I vowed never to let it happen to me.

My mom was not treated well when she lived in Florida. I was a teenager, and, unfortunately, added to her disdain of the place. I apologized to her later, but she did not have it easy there, or in their marriage. Marriage to a man who cannot communicate is not much of a marriage, although for many years they made it look good. She seems to have forgotten, all these years later, that no one could blame her for being unfaithful. A person can only take so much, and when my mom had had enough, the other man was there and paid attention to her. She’s never forgiven herself, though, and she never will.

In hindsight, the affair was something that was bound to happen eventually. My mother tried desperately to get Dad’s attention, even once telling him, “I need you to be my friend.” My Dad replied, “You want a friend, join a bowling league.” Dad needed to stay busy, and was from a generation where you worked, and you worked hard; a generation of men who mastered the art of avoidance of the changing times, under the guise of hard work and accolades from admirers.

To my father, those admirers were the students he taught. Never planning to go to college, God or Fate stepped in and changed the course of his life when Mansfield State College offered him a full scholarship if he’d play football for them. He accepted, and soon began his thirty-nine year career as a very loved, successful teacher. Dad was the kind of teacher who kept school interesting; his pet peeve being teachers who gave handouts for the class to complete, instead of actually teaching.

One day in class, he kept drawing attention to a metal pointer he had in his shirt pocket. The kids grew curious, and asked what it was. “Oh this? It’s a speaker. I can call to another teacher on this.” The kids laughed, not believing him, of course, so he took it out of his pocket, and spoke into it: “Mr. Merritt, would you please have one of your students bring me three #2 pencils?” he spoke into the little item, which was actually a broken radio antenna. Three minutes later, there was a knock on the classroom door. When he opened it, there was a student standing there with three #2 pencils who said, “Mr. Merritt sent these.” His students stared at him with their mouths hanging open. He never told them he had it all set up beforehand. He was fun and good at what he did.

One student told me about a time when I was in high school, and Dad noticed him looking at me. Dad looked at him sternly, and said, “Don’t even think about it.” My dad never told me about that, but it made me happy to hear, and explained why I never had dates in high school!

1985

My younger sister was born with a learning disability. Although she could drive a car, find any place she wanted to go without directions, and had a sharp sense of humor, her IQ was extremely low, and she had a hard time in school. She was living in Florida, going to the same high school that I had gone to, and where my dad taught. Dad asked if she could be in a special class, but the school refused. He told them that she needed to be in a special class, or he would resign. They refused again, and true to his word, he quit. He worked in a convenience store and did a 3 a.m. paper route to make ends meet. A few months later, my sister decided to move back to Pennsylvania. He never complained, never cried foul, returning to teaching later that year.

1993

The woman who would become my stepmother told my dad, after dating five years, to “play me or trade me.” This always struck me as odd because she was not the sports-quoting type of person who you think that would come from. It was clever, sure, but not at all like her. He turned her down. He’d managed to avoid women who wanted to get married since his divorce, but had been with this woman for several years.

It’s actually kind of fun to be the child of a man so many women see as their next husband. They give you gifts, take you to brunches where they serve Mimosas. One time I was even third row center at a Foreigner concert. The harder they tried to win him over, though, the more he backed off. He was firm in the fact that he would never marry again. He would say he did not want to be a burden when he grew older, did not want anyone to have to take care of him. He wanted to be buried in a garbage bag, and he stressed it over and over, never be a burden to anyone, ever.

When he told me about his woman-friend’s ultimatum, of sorts, I said, “Well, what are you going to do?”

“I’m not getting married again. I want to be able to take off on my motorcycle when I feel like it, with no one asking me where I am going. What if I get old and sick and she has to take care of me. What kind of life is that for her?”

“Daddy, when you love someone, you do that for them. I don’t think she’s the clingy type, she seems pretty independent to me.

“I’m not getting married.”

“Okay.” I said.

The next day, he said, “I’ve been thinking about getting married.”

I replied, “Yeah, I was thinking, too, why DON’T you?” He agreed. “Yeah, why DON’T I?” So, on December 29, 1993 (for income tax purposes) my Dad married his second wife.

1995

My Dad was out on his bicycle when a pain in his chest forced him to get off the bike and walk it home. He rode his motorcycle to the hospital, was told he’d have to be checked in, rode it home, showered and changed clothes, and rode it back a second time. He’d had a heart attack. The lower half of his heart just stopped working. He made a full recovery, but decided to retire from teaching. It was too stressful; kids were different these days, he had had enough.

He enjoyed retirement, got back on that motorcycle, traveling throughout the United States, and even rode his bicycle with my sister from Florida to Pennsylvania.

“It’s better to wear out, than to rust out. That’s what my dad always said.” That was a line Dad repeated often.

1997

My hands begin shaking, and a nervous feeling comes over me as I stand at the counter of the bank where I work.

The phone rings, I already know it is for me, before anyone even answers it. My friend hands me the phone, and it is my mother telling me Grandmother has passed away. I just say, “I know.”

Our grandparents were the kind of people everyone wishes were their grandparents, and they had no problem treating you like one of their own. My grandfather had passed away eleven years earlier, and now, after denying the fact that she had cancer, grandmother was gone, too. The end of an era.

Meme attributed the shortness of breath to stress, stayed positive, and never gave into the fact that she was dying, until the very end. She loved her family, loved her life, loved her only child, my mother.

“Have you talked to your mom? How do you think she sounded?” she’d ask me every time I spoke to her. She worried so much about all of us, but when I’d call her about a problem I was having, she’d paraphrase Proverbs and tell me, “Oh, be anxious for NOTHING!”

One night at her house, I said, “Meme, you know what I am craving?”

She looked at me with big eyes and said, “What?”

“An apple fritter.”

“Oh, let’s go get one.” The only problem was it was dark outside and snowing heavily.

“Hmmm”, I told her, “Well, I can’t drive in snow, and you don’t drive in the dark.”

We looked at each other for a moment, when she said, “Let’s go anyway!” So I drove, very slowly, to the local donut shop, where we sat and had apple fritters and milk.

On the airplane ride to Pennsylvania for her funeral, Dad and I were put on a tiny plane, with only two seats on either side of the aisle, and one bench seat in the back. So small, that the flight attendant took my father’s briefcase from him and stowed it in the baggage compartment underneath the plane, to make room for the passengers.

My seat was toward the middle of the plane, while Dad was squeezed into the bench seat between two much bigger men. He rolled his eyes dramatically at me, and I laughed. As the plane’s door was closed, my dad took the opportunity to make his point. In the pre-flight silence, my Dad piped up, “Now, I know why they took my briefcase. I’m surprised they didn’t take my wallet.” Everyone laughed. He was always great with the one-liners.

*******

My father never hit us, or even yelled very much. Instead, he would be silent.

Silence. The silence that made you question your every move. The silence that made us whisper to each other, “Is Daddy mad?” The silence that did not come with any answers; the silence you had to read and figure out on your own, and the silence that forms you into an adult who can walk into any room and feel every mood, every tension, and who cannot stand to be anywhere too quiet without begging someone to please speak.

I feel like that now, sitting in his living room. His wife is reading a book, Dad is watching TV, and my daughters are still staring at me, now mouthing the words, “BEACH!” I should jump up and say, “I’m taking the girls to the beach!” and storm out, but I don’t. I sit and wait for my dad to move.

The last time I visited, I cried the entire way home. Sad to be ignored, devastated that the only conversation we had had was about suicide, and how he thinks about the different ways he could kill himself. I email his wife when I get home to tell her he is talking about this and she takes him to the doctor. He is given an antidepressant, and things change noticeably, but he goes off it after a month, saying it made him feel strange. ‘That’s called hopeful’, I think to myself, but of course do not say. He doesn’t want to try anymore, and it is not until this very moment that I realize that the dad I used to know is gone. Alive, breathing, walking, talking, eating, sleeping, but gone, and not coming back.

It’s funny, sad-funny how things go full circle in life, and what you don’t have tolerance for comes back to haunt you. Dad could not stand inactivity, would always quote HIS Dad as saying, “I’d rather wear out than rust out.” He ran marathons, was a tri-athlete, mayor, teacher, coach. For him, to sit still was not just a waste of time, it was sinful; you weren’t really serving any purpose. He never understood depression-my mother’s or mine. Just as he did not know how to handle her extreme sadness, I would lie on the floor crying, and he’d walk right over me; tell me to read the Bible, or tell me I was just like my mother. And now I watch him. Depressed, no joy, sitting watching a football game with no sound on, and it hits me. Dad sees himself as useless now, a burden, something he never wanted to be; the worst thing a person could ever be, in his opinion.

He tells me, “My dad was wrong, El. It’s not better to wear out.” He’s beating himself up inside for the things he cannot do anymore, and I cannot fix it or tell him enough times that when you love someone, they are never a burden, and we all love him so very much and need him in our lives. Does he realize these two little blonde granddaughters sitting on his couch need a granddad, like the one I had, who’d take us for ice cream, give us quarters, literally move a mountain for us if we asked him to? That my brothers and sisters and I still need a dad? That his wife still needs a husband? I have been where he is; I have battled severe depression since I was a child. I have willed myself to die, even prayed to God to take me home. But as long as you’re still here, doesn’t that mean you still have something you need to do? And it isn’t staying mind-dizzyingly busy, it isn’t running marathons at 76 years of age, it’s not having a job where everyone loves you, and it isn’t even doing anything that is important to the world. It comes down to having one shot at this life. That’s all there is; you don’t get to come back to try again. I want to break the unspoken rule we have formed as a family. I want to do what was never allowed. I want to raise my voice, scream to him that it’s not over yet, and I need him. I need him when I need a shoulder to cry on, when life seems too hard, when the kids are driving me crazy, and my husband and I are fighting. I need him when I am scared and have no one to talk to. I know he is gone, I know he is sick, and I know for a fact he is severely depressed. I know that even if I screamed, it would be met with a non-expression, and it would occur to me that he was really just thinking that I maybe should lose twenty pounds. Did he ever see ME? Did he ever notice anything but himself? All those years I never measured up because I wasn’t doing anything–did he ever see the person inside who was so terrified of what was going on with her parents and in her family that she stayed home just to try to control it? I want to say, “You can’t give up now, although you’ve done whatever you felt like your entire life, Daddy. Maybe I’m being selfish, maybe you are, but try. Try for a day. Will all the memories, all the stories that I keep in my brain be overshadowed by the fact that you, of all people, just gave up?”

I try to understand it, but accept I cannot fix it.

With all the strength I have, I have to accept him.

I call him when I get home, crying. “Daddy, I miss you. I miss spending time with you. A weekend isn’t enough. I would love for you to come up and stay with us a while. Just say the word, and I will come get you.” He says, “That’s nice to hear, El. I’ll have to let you know.”

I hang up and say to no one, “I miss you Daddy, I miss the past, I miss the times when things were better, but I love you now, too. I know you’re not coming back, but you don’t have to. It’s unconditional.”

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Maryt1967 profile image
Maryt1967
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14 Replies
Dennis profile image
Dennis

Regardless of the illness, sickness, disease it is still best to trust in God and keep a positive attitude and as much as possible and hang around people who encourge you and you are the better for their visit, card, letter, phone call. Be around people who will pick you up and help you. Dennis

Maryt1967 profile image
Maryt1967 in reply toDennis

Dennis, that's what my Dad has told me all my life, so it is very meaningful that your advice would be to "Trust in God." Thank you

merlethegirl profile image
merlethegirl

What a wonderful daughter you are!

Maryt1967 profile image
Maryt1967 in reply tomerlethegirl

Thank you, I apprecaite that. I love my father so very, very much. He's still my hero.

mary

Kat00 profile image
Kat00

I understand your pain and frustration, but your father is NOT gone. Everyday is a chance to tell him how much you love him. Share your memories with him, tell him about each and every special moment you hold close. You have gone through depression yourself, and you know, no one could tell you to "snap out of it" no matter how much they love you.

I am The daughter of a wonderful Dad with Parkinsons, I can't begin to understand what he is going through,, but I do understand that what you see as an expressionless mask is a symptom of the disease, and not the lack of feeling on your fathers part. Look in his eyes. The father you know is still in there. While it is true that he may never be able to behave with his grandchildren the way he did with you growing up, he is still here.

You may or may not be able to reach through his depression but this is what you can do for yourself...

Sit in front of him, look him in the eyes, take his hands in yours and tell him~

"Dad, I know that you feel sad, I know that his disease makes you feel like a stranger in your own life and I know that you love me more than anything

You have never deserted me when I need you, and I need you now. I need to talk to you. to tell you how I feel, to share my happiness, my fears and even share in your pain and frustration." Dad I NEED you, don't let me down"

Then regardless of his response, visit with him. Sit and talk to him. Share stories with him. Share your life and your thoughts. Don't expect him to go places, entertain your kids or come to visit you. Don't expect anything of him but cherish every moment you have. He hears you and you need to say those things for your own peace. Even if nothing changes you will have no regrets

I wish you peace and love. Your Father truly has given you a world of gifts in his lifetime. Play his favorite music, share the movies you loved together as a child, Remind him of all those gifts~ and hug him every chance you get!

PatV profile image
PatV in reply toKat00

I agree. Take the action that only you can.

PDdaughter profile image
PDdaughter in reply toKat00

Thank you for your post. I have been struggling with coming to terms with my father's depression and anxiety from PD. I have been somewhat resentful at his apathy and inability to do things as important as coming to see his new grandchildren. Even though, I was cognizant of the fact that these were symptoms of PD, I still have harbored the expectation that he should be able "fix" these side effects. I think I can be more at peace with this. Thank you.

Maryt1967 profile image
Maryt1967

Thank you, that was exceptionally beautiful, and I do a lot of these things, always so afraid I can't get through. Your response was beautiful, kind, and caring and I truly, truly appreciate. My Dad is a huge part of my life, and my heart breaks with this disease. Thank you so very, very much.

Mary

Kat00 profile image
Kat00 in reply toMaryt1967

My Dad is a huge part of my life as well Mary. I think it is wonderful to have a place to share our thoughts and feelings and support each other. My Dad has found this site to be helpful as well, Not only for the information he finds here, but for the support in knowing that others are experiencing some of the same things...Could you show your Dad this site and share it with him?

Maryt1967 profile image
Maryt1967 in reply toKat00

I can try. I was afraid I would be met with criticism, but everyone has been very loving, and I need that, and my dad needs that. He has lost all interest in things, but I will try. I try to find things along the way that will help him, any way that I can. Any suggestions would be so very appreciated.

We live 8 hours away now, used to be 3 hours, before that I was right next door. I miss him every day.

Court profile image
Court

Your dad has not gone. Parkinsons does not always have the symptoms you describe. I know a lot of people with a tremor who can remain the same for many, many years. The depression is terrible to deal with and this is the same with depression no matter with the cause.

Even if more symptoms occur, he is still there. Hang on in there. He needs to feel your love and encouragement. Believe me I know how you feel.

Will be in touch again. Believe.

Maryt1967 profile image
Maryt1967 in reply toCourt

Thank you Court, please stay in touch

Joealt profile image
Joealt

Thank you for your kind thoughts.

What a great post! I am a parkie and and a parkie's son (pun intended) and I identified doubly with your story.

Dad has that horrible mask going. Even tho I know what it's all about, it still bothers me to see him looking grim and expressionless when I am interacting with him. When we talk on the phone his voice is animated, excited. Then I imagine his expressive face as it once was.

I have no solutions or advice. Except this: love is never wasted. And I;ll repeat a little poem that I sent a PWP sister who was consumed with depression and seemed on the brink of giving up altogether. It;s for you and for HIM

Words are breath

breath is life

life is brief.

Love is strength

here and now

breathe it in.

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