I was 27 years old when my fiancé was diagnosed with cancer.
I had a ring on my finger and a veil on hold at the bridal shop. I was googley-eyed and in love with the long lashed Chicago boy who spun me around a dance floor.
When the diagnosis came, I put on my work boots like this was all part of the job of being a wife. When you love someone you take care of them. This was the ultimate marriage bootcamp, I told myself.
But no one told me the truth. No one tells caregivers what really happens when someone you love is sick. When your partner can’t hold up their end of the deal. No one tells you what happens to your beautiful life plan.
There is no way this is God’s plan. I think God is just as mad as I am. Here he is creating the most perfect, never before seen human race and he later learns a few have glitches. I imagine him banging his head trying to fix it. Trying to find the right formula. My God is like an APPLE genius, rolling out an update to fix the problem. I feel like I’m waiting for the message that I can now download and all of this will be fixed.
No one tells the caregiver, it will never be that easy.
You are immediately thrown into the medical field and you need to start learning and taking notes fast. Every medication name, every milligram, every chemotherapy, you’ll be tested later and you need to be able to answer and double check the people who really do know what they’re doing. There is so much responsibility as you sign papers as the caregiver. The person who makes the decisions when your husband can’t.
No one tells you how hard it will be to make friends.
I was at the pool last week with the baby and I met a nice mom about my age with her little boy. She asked me, “What do you do?” I simply answered, “I stay home with the baby”. She rolled her eyes, “You’re so lucky!”
I am so lucky. I am lucky to be home right now. I didn’t dare get into the facts about why I’m home. No one wants to bring that kind of drama into their life, so I simply smiled and nodded back.
No one will tell you that you will look into the mirror and not always recognize the person in front of you. There’s no amount of concealer that can hide the lines forming around your eyes. Marks left from sleepless nights, endless tears and worry.
There is no way anyone could have told me how heavy my heart would feel, so full of guilt. Am I doing enough to make him comfortable? Am I selfish for leaving the house? Do I hug him? Does he need me? I worry I’m not doing a very good job of taking care of him. All he wants to eat is macaroni and cheese yet I seem to screw that up. I saw it in the look on his face as I served him a soupy version of the Kraft delight this week. I’m not cut out for this.
I understood that cancer meant I could lose him. In so many ways, I’m prepared for it. But no one told me I’d be grieving while he’s still lying right beside me. I grieve for the person I fell in love with. I long for beers on the beach and dancing in the kitchen. I miss laughing during the day and lust filled nights. I mourn for the loss of the life we had planned. I feel the sharp pain in my heart for all that is already gone.
No one tells the caregiver how strong you have to be all of the time. If you fall apart, your partner will be long gone. You have to keep smiling.
I started counseling this week as my effort to pro-actively make sure I don’t lose my mind. She looked at me and said, “I can’t believe you’re sitting here and smiling at me and all of this is going on.”
I answered, “Being sad is so much harder than being happy. I just try to go the easy route.”
“What do you want out of this counseling? What is your goal here?” She asked.
“I don’t want to put the blankets over my head and never come out. I don’t want to go on a shooting spree. If you could keep me somewhere between those two. I’ll survive this.”
Warm thoughts, a huge virtual hug and if I can still believe in prayer, supportive prayers sent your way. I wish I could see being sad or mad as being the easier choice. God bless you for your tenacity and outlook. God bless your family and thank goodness they have you!
Amanda you are seriously the strongest young person I have ever met! Your integrity makes me yearn to be a better person!!! I pray for you guys all the time and for a healing miracle for Joe! Bless all 3 of you! #joesyrong
I think you are amazing and you are right, it is not God’s plan. It is his evil Aechnemesis. Think Spider-Man and one of his many foes…;). I cry and pray for you all.
You are doing the right thing. I watched my husband die of melanoma that went to his brain – he was 50 years old and lived 16 months after diagnosis – we had been married 3 years. I, too, finally went for counseling and hypnotic suggestion therapy in order to be able to sleep and work and take care of my husband. Caregiving is unbelievably hard and you are constantly doubting yourself. Just take care of YOU and do the best you can – if you do that, you won’t have any regrets later. Your baby needs you and you need you, so you have to take care of ALL of you. Counseling is a very smart move. My prayers are with you during this journey. I have survived and life goes on. Enjoy every moment you can!
I am 31 years old with 2 year old. Right now I am sitting next to my husband’s hospital bed as he lost his right kidney yesterday to a tumor. I felt horrible guilt when I left the hospital after 10 last night and thought the same things – am I doing enough? You (and me) are doing awesome! I wish there was a play group for mom’s with small kids and sick husbands. It would be the ultimate therapy group, and yes there would be wine involved. =)
Hi Amanda, I’m an Allison’s friend of your dad. I’ve been where you are just a couple of years ago, although with grown children and 3 young grandsons. Grief counseling helped me hang on to a bit of my sanity. I hope it does the same for you. I have an excellent article explaining the caregiver starts the grieving process when the words terminal, incurable, etc are heard the first time. Wish I would have read it sooner, as it did help understand why I felt certain ways or had all these crazy things flipping thru my mind like an old, endless reel movie. You want to run away, but you can’t, right…as the old 70s saying says, you just have to “keep on keeping on”…God bless Joe, Mira and you and I’ll keep you all in my prayers.
You have amazing strength. Most could not do this as gracefully as you and share it with the world. Keep your faith, as hard as that may be. Mira and Joe are blessed to have you. You all are constantly in my prayers!
What an incredible sense of understanding you put into this for us who are sharing your familie’s journey… May you find continued strength, and may this evil “thing” we know as cancer soon be banished, so that your family member, and all people affected with this disease, and their caregivers, not have to know what it is to go through this terrible time. May GB you and your family…..
I wish I could just give you a big hug. I read all of your blogs . You are so strong. Glad you are going to counseling. You need that person on the outside to talk to. You need to remember to take of you!
You are incredible Amanda.
Amanda we love you !
I think I’ve said this before, but you are my hero, Amanda. (I know heroine is the proper term here, but it sounds like I’m calling you an illegal drug). Love you, Joe and Mira!!!!
Amanda, you inspire me everyday! I just read what you wrote and it takes my breath away! Do know that God does not want this for you either and there is a “glitch” in the system. We have figured that out with our son Nolan and all his health problems. It seems like it took Jim and I so long to understand what you have just wrote. You are so good with your words and please keep believing that God does not want this either!!!!! Frankly, your situation SUCKS but keep truckin because if you don’t do it no one else will!!!!! You guys are amazing and the things that you three have to go through no one will ever get! Keep up the faith!!! We will keep praying!
Amanda, this is so beautiful. Thank you for letting us into your heart like this. It IS so much harder to be sad than happy. I love that you put it into those simple words.
This sucks and you know that all too well. I am praying for your family. Counseling is a great idea. I lost a family member to this horrible disease so I can understand all of your emotions. Stay strong!
You are amazingly strong even if you don’t feel that way. Hugs.
I so agree! Strength personified!! XX
Amanda, my heart breaks for you, no one should have to go through what you, Joe and Mira are. You are amazingly strong, but we all break at some point, take time to make care of yourself, don’t feel guilty, you must stay well to help Joe. I pray that things get better,. I wish I could wave a wand and you can go back to that incredible life you had before the evil cancer struck. Just know we pray for you, send you love and wish we could do something to help .l love , Anne
Please know what an amazing person I think you are, and also please remember that the love you share has made this all so much harder, but it is also a love that most people never experience in their entire life. God bless!!
I agree with all the other comments……You are amazing; both of you are amazing…..You are living a life no wants to live, one that most of us can’t even imagine living and yet your strength and grace just blow me away. I continue to pray for the 3 of you….prayers for peace and comfort, less pain, more sleep and many, many, many more days together.
Amen to this Anna …..
Sending you, Joe, and Mira lots of love and prayers
Thank you for helping me be a better supporter for a dear friend that is also a caregiver for her husband. I pray for you, and everyone that ever finds themselves in this role.
Amanda – the world is brighter with someone like you in it.
You are right Amanda, no one tells you these things. Who really can though. Would you have understood if someone to you this a few years sgo? It is a road too many travel but no one speaks of
I am a cancer survivor twice. I know what it feels like on the other side to be in bed day after day month after month and see the sadness worry fear in the eyes of my loved ones and knowing I am causing that pain. I will tell you that side there is nothing you can do wrong for those of us suffering. Be I g there, being g present, just you willing to love us when there does not seem like we are lovable is everything. It was the joy in my days. I might not have always been able to speak or communicate but my heart was always filled with thankfulness and love for my family as I know they endured as much if not more than me. Keep the faith dearAmanda. You are doing God’s work in the work of your hands. May He bless you and Joe with precious moments of joy to sustain you in this.
I have walked your road. You are very insightful, so young, so soon! Do know, no matter what the outcome, this time will provide you with intimacies, memories, insights, understanding and appreciation that you might never have known otherwise. It is hell, but in some very strange way, it is also a special gift. Blessings and good luck to
you both.
My husband always put on a brave front when his family came around. I begged for help. His golf buddies saw his pain because they came around more often. No one knows what goes on behind closed doors…the true pain he suffered so much. My daughter and I lived with it. Would I change anything about being a caregiver—no. I loved that man!!!! I only wonder if his family (who live within a few miles) regrets not helping him more. A few days before his death his one sister said “I didn’t realize it was so bad.” I reminded her I sent a plea for help but she told me she didn’t operate in advance.
Regrets….I have none being his caregiver. It is 9 months later and I miss him so.
I admire your honesty and your courage. I can’t even imagine the difficulty that you have gone through and how hard it has to be each day. I think it is wonderful how you are helping others during their struggles. I hope that you will get stronger and realize you did all you could as a caregiver with what you were dealing with. Sending hugs and prayers of comfort
This just so accurately brings the story of the caregiver to life. My husband was also diagnosed when I was 27, he was 28. It’s been a constant battle for the last five years. I can’t begin to describe the different levels of guilt that comes with caring for someone with cancer. Thank you for sharing your story.
Thank you for sharing your story. My husband lost his 4 year battle with male breast cancer in March. I see that people commented on your strength and courage. I have also gotten the same comments. I don’t feel strong and courageous – I wonder was I really strong enough and how did I lose this battle. Did I care for him enough? Did I do the right thing? Did he know how much I loved him? The journey is 10 million steps and it is a lonely journey. So I say to you that as I walk these steps, strength comes from know that I might make a difference by advocating for more research and early detection. My strength comes from knowing that my husband loved me and would want me to move forward. My courage comes from keeping his voice alive. I continue each day, but not because I am strong or courageous, but because I know that is what he would want me to do. Just maybe I can make a difference.
The list of detailed things that you will
see, feel and experience as the caregiver to a cancer patient is unimaginable and unfortunately so few us talk about it. The loneliness is overwhelming. The worry is all consuming and though your drained physically and emotionally none of this is about you. It’s hard to talk about because everyone wants to ask about and talk about him. Then, when one rare person dares to ask how are YOU doing in all this?….you can’t answer that honestly because if you go there, really go there, you’ll lose it! Keeping up the hard outside shell is essential because let’s be honest on the inside our chocolate is already melting.