One of the most difficult and complex things one will ever do in life is be a caregiver for a terminally ill loved one. In my case, it was never a question of if Annie was going to die, but when. As a caregiver, the burden that we carry is almost too much to bear at times. Annie and I won every battle we fought, and there were many. But, in the end we lost the war. It’s heartbreaking having to watch a woman you adore, so independent and strong be ravaged by a savage cancer. That quickly pulls life into perspective, and we soon learn to appreciate and cherish every day we have with our loved one, regardless of how bad the day is.
Always remember, a good day for your loved one may be a bad day for you. Your day may start out with you carrying around a heart filled with pain as the end draws nearer, and your loved one is simply happy because their still alive. They can still see, they can touch, they can smell, and yes they can still love. So we adjust our mood to theirs, and give them what they deserve and need. A good day! As caregivers, even when staring such adversity in the face, we can’t deny them that. In my case I had the rest of my life to heal, while she was losing hers. And once the final bell tolls, the true grief begin. The rest of this story was from a journal I wrote 2 years after Annie died, and was not only my take on grief, but part of the healing process.
What is grief?
In my opinion, grief is a part of our body’s self-defense mechanism that allows potentially harmful feelings of sorrow to leave our body. Anytime our body is overwhelmed with sorrow grief gives us an emotional release, thus expressing our feelings, most often through our tears. In many cases we stay in touch with our loved one by looking at pictures, reading old notes, remembering the good times, sharing in our laughter, playing our favorite music, and whatever else we shared and enjoyed in life together.
My grief was driven by the love I shared with my wife Annie. And I do believe, the more we love, the more we lose, which equals a much longer and more difficult journey through our grief. Some folks never get over their grief, but thanks to our body’s resilience, we learn to get through it. In theory, the loss of a loved one can create a darkness that penetrates our soul, which becomes a measuring stick for our grief. As the darkness slowly departs from our body a wonderful thing happens. Our grief starts to dissipate, and we can feel ourselves stepping out into the light. What I found amazing and unexpected was I had a strong sense that Annie stepped out into the light with me. So I realized it wasn’t Annie that was keeping me in the darkness, it was me. We all know our loved ones would certainly not want us to be sad, so why are we. Simply put, we loved and we lost. But in the end, although things can never be the same, we get better and once again find our purpose in life.
Breaking down grief
It’s important to understand when you first started to grieve. The reason is simple. I started my journey with grief the day Annie received her diagnosis/prognosis. I was told privately that Annie would not survive her cancer. So it follows that at some point prior to a loved one’s death, depending on the circumstances of the death (how quickly the death occurred), grief will be firmly entrenched in your emotions and actions at the end of the journey.
Can we control our grief?
Under certain circumstances we can, and in my case, I had to. Annie was terminally ill, and grieving in her own way. So it was important for her that I stuff my grief while she was grieving and fighting cancer. It wasn’t easy, but it came with the understanding that our journey was about her, and not me.
Here’s a tip: If you need a good emotional release as I did at times, just find a quiet place away from your loved one, and let your emotions come flooding out. It won’t take long, and when you rejoin your loved one you’ll be more composed, focused and able to help out.
As Annie’s caregiver husband, I had a ringside seat to everything that was going on. I instinctively knew that if I showed signs of weakness through my grief, it would allow her to become insecure, which is an emotion or fear that she didn’t need while fighting her battle. And it would make her weaker in the long run. So here’s the answer to the question about how long you’ve been grieving. This is what happened to me. For the most part, but not always, I stuffed my grief for 30 months while she was fighting her disease. When she died, the old theory that I’d been grieving for 30 months, so my grief should be light, went sailing out the window. It was more like an explosion of emotions, that my mind couldn’t digest, but there was nowhere else for them to go. I can tell you, that’s not a good place to be. The pain was immense and it felt like the life was being sucked out of me. I just kept saying over and over, “I want her back.” And that was just the beginning of my 24 month nightmare. Yes, that’s how long it took for me to feel half way sane again. Having said that, I do know that everyone grieves differently and that there is no time limit on grief.
Grief & mind games
In the beginning, grief is like a mind game and will literally make you reflect back to things or events that you’d rather not think about. It seemed to me that the more traumatic the event was the more I focused on it. And that’s something I tried to avoid as much as possible, but grief is strong and it will fight back. Grief is so deceptive that it will try to convince you of things or events that you know were not true and perhaps didn’t even happen. What I’m saying is, grief will disrupt your thought process, and it can be a real battle at times to maintain control.
What I came to understand while fighting grief
It is very deceptive, but less complicated when we start paying attention to our feelings. It’s truly a state of being and what you are feeling in grief is quite simply your way of dealing with your memories. I found that sometimes my memories didn’t always set well with family and friends, as they just wanted me to move on. And that’s okay, but remember, they are your memories and no one can take them from you. Also, it’s important to understand that most family and friends have no personal idea how you’re feeling, as they are not you. Stay the course with your grief, and move forward at your own pace. In the end you’ll be glad you did. Healing takes time, and can’t be rushed. If you need help with your grief, I can be contacted via email at bob@thecaregiverspace.org I will help you through your grief if need be.
Bob, just touching base again. This article resonated for me today. A few months ago, maybe back in February or March, we chatted on the spousal support chat. My beloved husband, soulmate and best friend, Tom, died on April 18 after 34 months fighting AML and Stage 4 lung cancer. Like you, I was told from the beginning it was not a matter of if, only a matter of when. I’m living through a painful time, day by day, hour by hour. It’s changing me… How could it not? I do know and hold to some words he shared with one of his doctors and I, “Once I’m gone, she must still be able live. My death should not end two lives.” This was spoken as we discussed his palliative care and my emotional wellbeing. I’m grateful I have that memory of his words to guide me through in the dark and lonely times. Knowing what he wanted for me gives me the strength to keep trying and to want that for myself as well. I am living (and grieving) in my own way, at my own pace. Thank you for what you continue to provide in this forum. You touch many lives, some of whom you may never hear from. You made a difference to me. Thank you.
Dawn, Your grief is yours and yours alone. Don’t let anyone take any emotion away from how you’re feeling. If you want to laugh, laugh. If you feel like crying, even in public, cry. I did! Yes some folks may have thought I was a bit crazy, but in reality I was healing. You have to fight the battle on your turf and on your terms for as long as it takes. Not being able to grieve properly because there was so much to do is a huge illusion, that always comes back to bite you. You think you’re doing really good and getting things done, and you are, but Mr. Grief is still there, waiting in the shadows to pounce when you let your guard down. I basically dropped my guard and said to Mr. Grief, bring it on, take your best shot. You can hurt me, but you can’t kill me. I thought I was going to die at times, I was so sad, lonely and miserable. But here I am 4 years later trying to help you. When you get better and you will, you will have a different perspective on life than you had before grief. Yes, my world is still lonely, but beautiful–I’m not sick any more and life is slowly taking on a purpose again. I wish you the best. Keep me posted on how you’re doing.
http://www.forevermissed.com/annie-barber-harrison/#about Annie’s online memorial, 63,000 visitors. It will help you.
Dawn
Feb.13/2015
Going through that now I lost my husband too cancer just a little over 2 years ago, being his caregiver, I didn’t know how difficult it would be too move on. When he first passed away there was so many things too do that had too be taken care off, that I never took the time the time too grieve, Late last fall I was sitting in my livingroom and it finally hit me that he wasn’t coming home. I have a hard time just getting thru the days, let alone all the lonely nights when I sit and stare at the picture on the wall, and keep telling myself its not real. You are so right when people say move on they have no idea the feelings that you’re going through at that time. Thank you for the article I thought I was losing my mind, but after reading your article, it made me realize the feelings I have are normal. so thank you
Grieving does not come easy to the caretakers … for the sake of our loved ones, we have had to suppress too many emotions for too long and find ourselves still hiding under that rug You are right, there is no time limit on grief…thanks for your article…
Barbara, grief does not come easy for most people. But for the reason you mention it is very hard on caregivers. By the time we lose our loved one, we are already overwhelmed from stuffing our grief, then, when the loved one passes, it’s like a dump truck drove up and dumped a full load of grief on what we already had. Being a caregiver and then a griever, defies logic. But, we’re caregivers, resilient, tough, and just like cargiving, we find a way to get through our grief and make the best of a bad situation. I wish you the best.
http://www.forevermissed.com/annie-barber-harrison/#about This link is my wife Annie’s online memorial. It’ll help you.
Bob, going through that know. I lost my dad in December and i feel worse now that he’s gone 2 months. Can’t seem to move on. He had many surgeries and memory loss which made it hard to communicate the past 2 years. Life will never be the same.
Mary, the world as you knew it has now changed. It will never be the same. And that doesn’t mean it’s gong to be horrible, because it’s not. But during the time you’re in heavy grief, you will not be able to see that. Your emotions are simply raw, and your senses are all going to be vivid. Grief can cause terrible lack of concentration as the cobweb in your mind sends signals (memories) bouncing back and forth off of each other. It can be a nightmare, mine was, but you will get through it. Grief will live in you as long as you let it. Get the picture album out and start looking at old photographs. Let the tears flow, play some sad music, again, let the tears flow. That’s how we heal. Don’t let the emotions stay locked up inside, they can make you sick. It took three years for me to realize that I was sick and tired of being sick and tired. And that’s when I knew I was going to be okay. Now, a year later, although my life has changed, I can once again see the beauty in life. Take your time, and stay the course. Sooner or later you’ll get to the light at the end of the tunnel of grief you’re in. It won’t be easy, but you can do it. You must and you will. And remember, we never really get over our grief, but we do get through it. Which is where I’m at now.
http://www.forevermissed.com/annie-barber-harrison/#about This link is my wife Annie’s online memorial. It will certainly pull some tears out of you. The music is beautiful.
Bob, I’m fighting a battle with grief and your article has given me a clearer insight into what I’m experiencing after the lost of my son in September He or rather we fought this battle with pancreatic cancer for two years. Thank you so very much !
Hi Edith. Pancreatic cancer–just the words scare me. It’s such a bad cancer. So sorry for your loss. I’m glad the article helped you. I knew it would help some people, because I wrote it while I was in grief. I simply opened my heart as would you, and told it as I felt it was. I know you’ve been there, where you feel like we’re dying inside. For me, writing was always my best release. Edith, if you feel really brave, look at Annie’s online memorial. It’s reputedly the #1 online memorial on the planet. I created it out of my love for her and to leave her legacy so to speak.
http://www.forevermissed.com/annie-barber-harrison/#about
You’re welcome Cindy. Grief is tough and as we both know, not a good place to be. But we’re survivors and can now help others. The “Circle of Life.”
Your words are spot on! I lost my husband 2 years and 3 months ago after a 3 year battle with ALS. Everything in your article is exactly what I feel, including the 2 years of grief. I am finally able to breathe and enjoy life without the heaviness of grief on my shoulders. Thank you for your words of encouragement!
What an insightful article. I really love reading your story, Bob.
Thanks Thea, there is so much still to come. There will be a new blog out tomorrow.