It's been weeks since I've written. The last post I shared was about my father, and it took a lot out of me emotionally...
Any time I reach in to myself to write it takes me time to heal. Each post is written from my own truths and sometimes they are truths I would rather not face. But, at least for me, facing your pain is what brings peace to your life. The last few weeks have been filled with reflection and there was something I wanted to share.
Being a Caregiver felt like someone had handed me a cape and told me, "now go be a superhero!" I accepted the title and the responsibility that went with it. I also began to accept the belief that I had to do it all on my own. Somewhere along the way my mantra became, "I can do it all." and "I don't need anyone." I think in a strange way, though exhausted and consumed with sadness, I took pleasure in it. I liked knowing I could handle it. Subconsciously it felt good to turn down the help of friends and family. It made me feel important and needed.
What I realize now, is that it was about control more than anything. I had no power over the diagnosis my mom had been given. I couldn't save my father from dying. What I could control was her day-to-day. I could make sure she was eating the right foods and drinking the right tea. I could be positive about every vitamin she took and I would be there to monitor every medicine administered to her. This desperate need to remain in control of something, of anything, continued until the moment she took her last breath. What happened after that last breath is what I want to share with you.
I started drinking every single day. What had been a social pot smoking habit became my routine from the moment I opened my eyes until the moment I closed them at night. I slept with men I shouldn't have. I was mean to friends who didn't deserve it. I booked trips to remote places and traveled alone without doing a bit of research. ( I don't actually regret the trips but research and planning could have prevented some unfortunate rickshaw rides through desolate Indian streets). In short, I hit rock bottom and I stayed there for years. I was functioning. I held on to jobs, I maintained relationships. By all accounts I probably seemed like I was faring better than expected but inside I was a mess. When she died, it was like my body, heart and mind shut down. I had been running on empty for years and now it had finally caught up with me. I lost my compass when she died. More noteworthy was that I felt like I had lost my sense of purpose.
Being a Caregiver becomes your entire identity. It is your job and your hobby and your past time and everything in between. When that job ends, you are left wondering what you have left to offer the world.
I write this to you because I hope to save you from that sense of loss. Or at the very least, I want to make you aware of its impending arrival.
You are NOT a superhero so put down your cape. You are a mother, a father, a son, a brother, a sister, a cousin and a friend. You have a network of people who love you and WANT to help you. Everyone wants to feel needed and there is someone in your life that wants to feel needed by YOU. Tell people what you need. No one but you knows how difficult this is, so stop expecting people to read your mind. Especially when you are portraying it as if you have everything under control.
Your purpose in this life is not just to be an amazing Caregiver, but to lead an amazing life afterwards as well. You don't just have control over how your loved one lives her last days. You have control over how you live yours. There is so much life left in you. Savor it. Know that the pain of your current situation WILL subside and there is a beautiful life waiting for you. Your purpose is YOU.
I don't talk about him much...
It has taken me 35years ,and his death, to wrap my head around our relationship.
What I have come away with is, I loved him.
He was my first love. I loved the way he called every woman baby. I loved the way every woman smiled when he said it. I loved the way he made eggs. I loved his smell and the way my hand felt in his. I loved his hugs. His intelligence. The fearless way he rode his bike through NYC. Watching him play chess in Harlem in St. Nicholas Park on a Saturday afternoon. His obsession with old westerns. Us walking around the neighborhood while he sang. I loved sitting next to him to watch basketball games. His laugh. I loved his voice on the phone when he would lecture me about my choices in men, when I knew he knew I kept picking men just like him.
I loved the way I loved him. I loved him hard. I loved him in spite of the pain. I loved him even though his inability to truly care for me almost destroyed me. I love knowing that I am capable of love like that.
And on this day, the anniversary of his death, I choose to remember what I loved only. I choose to let go of everything else and know that our relationship taught me everything. God always has a plan. It is because of our love that I know how to love others...and so I thank him. And miss him. And wish things could have been different....
What is inevitable in life is the transition of our parents from this realm to the next.
We all believe in different things. I believe that my parents are still with me, just in a different form. A form that makes conversation a bit one sided :)
There are many things I wish I had done while they were here. One of my biggest regrets is not asking enough questions. Your actions reflect where you are in your life at the time. I know that it was my age, and age appropriate immaturity, that prevented me from asking the things that I wish I knew now. For those of you who are blessed to still have, not just your parents, but any elder in your life ask questions! Ask the things that give you clarity as to who they were when they were younger and how they wound up where they are now.
Here are 5 questions to begin your quest to learn about your loved one
A friend of my mother told me years ago, when my mother passed, "It will never get easier, but it will get different." She had lost her own mother and knew what I was in store for. She couldn't have been more right. It's been 7 years since my mother passed. I am finally able to talk about her without crying. When I wake up, it's not the first thing I think about anymore. I am no longer stung by the word "mom". And when I see a picture of her or have someone mention her to me, I am able to smile rather than collapse.
That being said, Cathy was right. The pain is "different". It is a constant ache that never leaves. It's an emptiness that is always waiting for you. The awareness, every time something wonderful happens, that I no longer have her to call can be like a slap in the face.
The past week or so I have been vividly dreaming of her. There are times when I welcome it. It's like a wonderful visit and it leaves me happy and peaceful. Other times, like recently, it's too much for me to handle. I can smell her and hear her and I wake up with a sense of longing that is hard to describe.
The dreams left me sadder than I've been in a while and so I stopped writing. I sat and cried and drank tea and watched really pathetic movies that required multiple boxes of tissues. I stopped answering every text and phone call and began talking to my animals a lot :). When I began to come out of my hole I felt guilty. I felt like I had let people down. My life is based on helping people see the way through the darkness and here I was wallowing in it. And then I had my own "Aha" moment. (thank you Oprah) It is okay to be sad. It's okay to be miserable and angry. If you want to lay on your couch in the same sweatpants for days drinking wine and crying then do it! Just don't stay there. Ride the wave. Accept that it's what you need at that moment. You are not a robot. You are human and humans need to cry and scream sometimes. Feel it because expressing it is healing. And when the wave begins to subside, do the things that make you happy again. For me? I did Yoga and I mediated. I watched Modern Family instead of Beaches and I turned my ringer back on to talk to the people in my life who love me and who make me laugh. And I began to write again...
Sadness will happen. It's inevitable. But let go of the guilt. The world will go on without you. Take care of yourself and just know, it may never get better but it will get different.
There is a quote by Winnie the Pooh that I love..."How lucky am I to have something that makes saying goodbye so hard."
Being a Caregiver means that you are faced with the idea of losing someone you love on a daily basis. You are forced to grieve before you should and you are expected to carry on business as usual. Everyone looks to you for answers. You are not just a Caregiver. Now you are an accountant, a proxy, an insurance expert, a friend, a sounding board and if you weren't a mother before, in essence you are now. You are facing the hardest battle of your life and I wish to take nothing away from you.
Some Caregivers are supporting family they barely knew, or they did but wish they hadn't. That is the truth of death. When facing it, some times it's the very people you pushed away in life that wind up guiding you through the end of it. Other Caregivers are caring for people they truly love. How lucky are they? A sad fact of this world is that some live their entire life without receiving true love from others. There are children that have never known their parents. Children that have been bounced around foster homes and shelters. There are adults that have never been fortunate enough to have a friend that they felt was their soul mate. Men and women who were never lucky enough to meet their "other half". There are people, who you walk past on a daily basis, for whom "alone" is an absolute with no foreseeable way out.
Losing my mother was the most terrible pain I have ever felt. It felt like a part of me had been ripped out. After she passed, I didn't think it was possible to ever be truly happy again. 7 years later, I still have days where I feel like that. But how lucky was I?? How lucky was I to be born to a woman as amazing as she? How lucky was I to be raised by a woman who loved me and supported me? And how lucky was I to have someone in my corner that would have traveled to the ends of the Earth for me?
Was our journey at the end of her life painful? Devastating? Absolutely. But I was one of the lucky ones, and so are you. If saying goodbye is hard then you are more blessed than you believe in this moment. Take a moment to really think about that today. Sit with your loved one and realize it is because of how hard they loved you that this is so difficult. Hug them, kiss them, and thank them. They took care of you perfectly. Now it is your turn...
I don't talk about my father much. Since his passing, I find it disrespectful to talk ill of him. But I led a workshop recently where I met a wonderful man facing a similar situation I faced, and it made me realize that in sharing my own story I may be able to help someone...
As a child, I was obsessed with my father. It is true what they say for fathers and daughters. Your father is the first man you love and your most influential love. When I was little we would take walks around Harlem at night, where he would smoke weed and sing to me. My guess is he was hiding it from my mother, but I loved those walks. He was brilliant and was usually trying to teach me some fact about something I would never remember but I liked hearing him talk. In the house, he basically ignored me unless I sat and watched tv with him, and so I sat and I learned everything there was to learn about basketball and football and those God awful karate movies. On Sundays, my mother would go to her church and he would go to his church. To St. Nicholas Park to play chess with the fellas. And on the rare occasions my mother allowed me to skip Jesus for the day, I tagged along after my father to find his own Jesus.
My father was charming and handsome. He was spiritual and intelligent and people were drawn to him. He was a superhero to me.
On Thanksgiving Day, when I was 11 years old, a woman called and introduced herself to me as my father's girlfriend. My entire world came crashing down that night. My father never came home and I didn't see or hear from him again until I was a Sophomore in high school. By this point I had years of anger and hurt built up. I had become a teenager whose greatest love had left without a single word. My mother was angry and bitter. I was acting out, turning to men to fix problems that my daddy should have been fixing.
Throughout high school, when my mother was fed up with my antics, she would call my father to come get me. I was a confused child, blaming her for driving him away and always asking for him. I would listen on the other line while he made up some excuse for why he wouldn't see me. The few times I did see him, he would let my friends and I come down to his new apartment and he would hand me the keys and beer and leave.
He was absent for my high school graduation but he did drive me to college. It was the longest, most silent, 3 hours of my life. As a broke college student, I would call and ask him for money and he would promise me he would send it. I would go to the mail room every day looking for his letter and nothing would come. Then he would ignore my calls for a month and the cycle would begin again. It went this way for all of my college life. Some times I would get drunk and call him and yell and scream and beg for answers. He didn't have any answers, but I never stopped trying. It was dysfunction at its best.
At one point, years later, my mother's lungs collapsed during her fight with Cancer. She was rushed to the hospital. In order to help her, they needed to skip anesticia and just open her up. I sat in the hallway, listening to my mother scream and I called my father hysterical. I was alone and terrified and I felt like a lost child. He told me, she deserved what she was getting and he hung up. I remember putting the phone down and deciding that I would never talk to him again. At that moment, I gave up on any hope of my father becoming a father.
When she passed, he showed up to the funeral late and sat in the front row. I was livid. How dare he think he deserved that seat. How dare he shake people's hands and act like he had played any role whatsoever in our struggle. When he hugged me at the grave site it took everything I had not to cause a scene straight out of a movie. Was that a tear I saw on his face?? I wanted to smack him. And yet at the same time, I wanted him to step forward and hold me and tell me I was going to be okay. That he would be the parent I needed. Days later he called and asked to see me, and I thought "this is it!". He realizes that he's needed. I thought that maybe he had stayed away because of his relationship with my mother and now he could be the man he should have been. When he got to my house, he asked to borrow money. I was devastated but I loved him so I gave it to him and I never heard from him again.
Three years later I ran into him on the street. I was walking to meet friends for drinks. I see my father and a woman walking toward me. I was on the phone with a girlfriend, and I stopped dead in my tracks. He looked at me, and shook his head as if not to say anything. I said out loud to my friend, "My father is literally walking right past me." His companion walked and talked completely unaware of the family drama surrounding her.
A year later that same woman would call my cell phone to tell me my father was in a coma in a NYC hospital. As angry as I was, still I went. That woman turned out to be his girlfriend of 10 years. They had been living together. She was under the impression that he and I had a fantastic relationship. That we spoke often. She was shocked to meet a woman in her 30's whose last real conversation with her father was when she was 11. She was even more shocked to find out that he hadn't seen his mother or sisters in over 15 years, not last Christmas like he had said. By the time my father woke up, he had Brain Cancer and was surrounded by all of the lies he had tried to keep afloat. I was there, his mother, his sister, his brother and the woman who had loved him and believed the life he had invented.
He wasn't going to live. My father had never been a man to go to the doctor. The Cancer had begun in his lungs years before, we were at the end now. It was about treating what they could and offering him comfort.
I had cared for my mother day in and day out, 24 hours a day. I loved her intensely. Through her sickness, our roles had changed. The mother became the child. As I bathed and changed her I began to love her much differently than I ever had. I also began to see her as a human. She was a woman who had faced a life of ups and downs just like the rest of us. She was leaving this world as she had come in, innocent. And I realized, as I held her at night, that she had done the best she could in her life with what she had been given. We all do. We are only capable of loving as well as we were loved. Some of us realize this and if needed, we work on ourselves to heal ourselves. Some people remain stuck.
It's because of what I learned in my mother's passing that allowed me to be with me father through his own. I didn't want to help him. I wanted to remain the angry hurt little girl I had been. But my mother had changed me. I was no longer a child. And I could remain stuck or I could do the work that broke the cycle. My father had been raised by an angry absent father. The adult in me began to see that this dying man was someone's son. He was a little boy who had never been shown how to father. He didn't have the tools to fix what he had broken in me. And I needed to let it go or it was going to rob me of being the woman I deserved to be.
And so I sat with him, and I played crossword puzzles. I watched the news with him and babbled about my life. I held his hand and told him I loved him and kissed his forehead. I told him I forgave him and that I was going to be okay. I didn't do that for him. I did it for me. I knew that the future me didn't need to deal with the guilt I would feel if I didn't. I knew that somewhere along the way I had found my mother's church and that God didn't like ugly. I knew that if I wanted to raise children who knew the love of a great father, than I needed to forgive my own. I was always going to attract men like him if I didn't let my issues with him go.
I tell you this because the truth is, some of us had parents we don't really like. Some of us have parents and siblings we barely talk to. And yet some of us will find ourselves in the situation of facing death with this person and having to forget and forgive. I think about my father now and I'm okay. I buried my anger with him. I look at myself in the mirror, and I know that no matter what he did to me, I answered with love and forgiveness in the end. It made me a better human being and I am proud of my choice.
If you are facing the same, I urge you to find forgiveness. To let go of your anger. In the end, none of it matters. Kiss them, hold them, tell them you forgive them. It is the greatest gift you can give yourself.
When I became my mother's Caregiver, my cell phone became my constant companion. Before she had to retire, and I moved in full time, I was still living and working in NYC while she lived and worked in Westchester, NY. I spent my days consumed with worry. As soon as I woke up, I would call her to check in. And then I would begin calling every few hours. I often wondered if the secretaries at her school found me to be caring or completely neurotic! As a teacher, she was done by 3:15. If I didn't hear from her by 4:00 I was panicking. Every evening I would call two and three times to chat and make sure she was alive.
When her health became too grave for her to work any longer, I moved in full time. She was usually too weak to talk on the phone and so her friends and our family would often call me. I became the daily announcer for all things Anandi. Eventually, the doctors stopped calling her and only called me. And it was me who had to deliver to her whatever awful news they had for us that day.
I had been an only child, and so by nature a bit self absorbed growing up. Now, I only focused on her. I spent every day calling insurance companies and trying to find a doctor that could save her. And every night I slept with my phone in my bed because if she needed me, from the room next door, she would call. Because now she was too weak to call out for me.
When she passed, I turned my phone on silent. The sound of it ringing would give me chills. Every time it vibrated it was like I was experiencing post traumatic stress, and I would immediately look for her name on the screen. It had become this awful traveling device of doom. I completely stopped having actual conversations on it and could only muster texting.
My friends and I would laugh about how rare it was to hear my voice, but few knew how painful it truly was for me.
Now, 7 years later, I have finally begun to answer. Not just that, I have actually dialed a few numbers myself! I know, that this means I am healing. Time has passed and the mind has a wonderful way of protecting us. Now, as I settle into my new city, my phone is this wonderful connector to friends and family. It rings and there is someone wonderful on the other end who loves me and who usually has some funny story for me. And sometimes, it's just a beautiful friend calling to have a glass of wine over the phone and chat about absolutely nothing.
My ringer stays on now, though set to some sort of zen chime, and I don't panic when it sounds. And every time I reach for it, I realize that the pain has eased and that I am going to be okay. And for that, I am forever grateful and blessed.
One of the things they don't warn you about is how incredibly frustrating you can find the person you are caring for.
Dementia, Alzheimer's, "chemo brain"...They change the essence of this person that you've admired and looked to to solve all of your own problems. The strangest part is watching your personal "superhero" become a mere mortal.
It never happens all at once. It's slow and it appears, seemingly, out of nowhere. It also comes and goes, so while a conversation may start off normal, you quickly find yourself lost on the yellow brick road wondering when that tornado blew into town again. The person you are caring for also tends to be pretty adamant that nothing is wrong with them. And that it is in fact YOU that doesn't understand. Many of them become angry and can be very aggressive.
What a wonderful side effect no one cares to mention...
It's usually during one of these conversations that you begin to feel like you are about to completely lose it. You may even argue back until you remember the reality of what is happening. Unfortunately this does nothing to lower your blood pressure, or the urge to throw something and cry.
You must begin to use your access your tool belt. The tools that you have stored away to save your own sanity in these moments. The list below helped me
Please feel free to leave a comment below!
It's okay to admit that you could not be happier that the holidays are over.
As a Caregiver, you may have good days, but the majority of your life sucks right now. While no one wishes to wallow in misery, there is a slight comfort in hearing Adele wail over a man, or Sarah McLachlan sing to you about sick lonely puppies during those heart wrenching commercials.
The holidays are like a smack in the face of your reality. Why is everyone so happy? Why does every song, blasting through every radio and speaker, sound like chipmunks on bath salts? Is it really necessary for every friend to send a picture of their happy healthy family that you then bury under the piles of doctor bills?
It's okay to admit that you feel all of this. It's normal and you are not alone in it. We often hear about how difficult the holidays are for those who have already lost someone. The truth is, our loved ones could be in the next room and this time of year is still hard as hell.
But alas, it's over! Pack up those lights and that tree. Take down the cards from the mantle. Hide the Mariah Carey Christmas album deep in the closet and feel free to throw out that sad little reindeer on your lawn. You've made it.
You did what you had to do. You've once again held your family together and given your loved one the holiday they deserve. Now, at some point today, take a deep breath, have a great cup of tea and don't be ashamed if it's Adele that makes you smile.
I'm proud of you.