Episode 98: Courageous Love for Caregivers

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How to love when you know it’ll hurt

You love the person you care for but when the fear of losing them becomes too intense what do you do? Do you start to pull away or do you find the courage to continue loving them as deeply as you can even though you know losing them will break your heart?

Let’s talk about loving courageously

Now as caregivers we all know that time is not guaranteed. So it is frustrating to feel hesitant in fully loving the person you care for.

You’ve given up so much of your life to be there for them. You will do everything you can to keep them alive. Yet there is a disconnect between advocating for life sustaining care and allowing yourself to fully love them. 

It’s completely understandable. You love them so much that the thought of loosing them is too much to bear so you slowly begin to distance yourself because you think it will be easier when you loose them. 

or…

Maybe there is a moment when you find yourself filled with love for them because of something they said or did, or maybe you caught a glimmer of who they were when you first fell in love with them, and you automatically feel sad because what also comes with that is the thought of not having them in your life. 

They’re there… and you’re struggling with the loss that hasn’t happened yet. 

Control

Now let’s first remember that we have very little control over loss. We can spend years helping our partners in life live through their disease or disability and then lose them from something completely unrelated. It’s that lack of control that drives some caregivers crazy. I know I was one of them when my husband was first diagnosed with cancer. I couldn’t control what was happening to him so I tried to control everything else. If he couldn’t get in for a scan as quickly as we would have liked I would call scheduling every morning to check for cancellations. I researched everything I could about the cancer he has so I could know everything about it. We aren’t talking about becoming educated in order to be a well informed caregiver. We’re talking about reading studies and journal articles when he hadn’t even begun to exhaust treatment options. 

Why? Did I think I would catch something the oncologists missed? Of course not. I had lost control of what was happening to my life and I was grasping. 

Not only was I grasping but I was distracting myself from the fear we were both experiencing. Instead of just spending time with him and allowing myself to fully love him in those moments and make him feel loved and supported I spent a good amount of time searching for something I couldn’t find, which was control over the situation and my life which felt like it was falling apart. 

It’s curious to me that as caregivers we jump into action to do all these things for our loved ones yet most times just sitting with them, slowing down, appreciating our time with them is what they really need. 

Worry

The other way some of us distract from how uncomfortable caregiving can be is we spend a lot of energy with worrying. Worry is normal but there can come a time when it becomes unproductive. It’s like the difference between worrying that you’ll burn dinner if you step away from the stove and worrying that the gas to the stove will be shut off before dinner is done. 

You can control if dinner is burned. You simply stay in the kitchen and focus on the task. However, you can’t control the supply of gas to your house. Unproductive worry is worrying about what would happen if the gas to your house is shut off while you’re cooking. It’s something you have no control over and can’t really do anything but chose to react or respond to it when it happens. 

The key words are “when it happens”. It takes so much energy for you to worry about what the scans will show when they go in for them in three months. You can do so much with your loved on in three months, yet if you’re worried about the scans you will surely waste time that could be better spent with the person you love. So if you’re sitting next to them watching tv and you start to worry about whatever is coming up next for them you are denying yourself the ability to simply sit with them and enjoy that time together. 

Worry has its place but when it pulls you away from life that can be a big problem. 

Putting Life on Hold

So much of life gets put on hold when you first become a caregiver. Think about what was put on hold first if you can. Did you reduce your hours at work or actually have to quit? Think of the things you stopped doing for fun, like book club or going for walks with a group of friends. Think of all the things you’ve decided not to do because you wanted to wait for when things got better. 

It’s so easy to put the actual living on hold when you are trying to keep a person alive. The walks, the car rides, the dinners together, the holidays and special moments all pushed aside  for the treatments and the surgeries and because living became too hard to actually enjoy it.  

Later, time for that later when things get better. That’s how some of us make it ok. 

Love is the Life Source

When you set life aside it becomes much easier for you to close yourself off. Close yourself off from being vulnerable and love even though you’re scared that you’ll lose them. That’s a big component of caregiving, isn’t it? You are a caregiver because they can’t care for themselves. Living instantly became too difficult for them and they need you to help them get through life. You are constantly reminded of the threat of loosing them and it hurts. 

It hurts to think about having to live without them because you have lived so many years in this world with a big part of your identity tied in to their existence. You realize that if you loose them you loose a big part of yourself and the loss is just too much to even bear. The worry of how you could even move on after loosing them keeps you up at night and you spend your days angry and distant because this situation just isn’t fair. 

It’s not fair. Neither is closing yourself off from the person you are so worried of loosing. 

Loving fully, as a caregiver, is courageous. It allows you the opportunity to live a life you love even when you know there will be loss. It requires you to love unconditionally and not expect anything in return because sometimes cancer, or an amputation, or struggles with mental health makes it hard for them to love you back the way they used to. That love is the source of your life. Without allowing yourself to love them out of fear of loosing them you stop living. Everything goes on hold until things go back to normal. 

Here’s a secret, things don’t go back to normal. There is no normal for us. There might be easier months or years but there is no normal to go back to. To live fully is to love fully all the time. There are no guarantees but there will also be no regrets. 

Looking Back

 Some of us will have the gift of spending more time living with our loved ones than others. My husband and I have lived with cancer in our house for almost a third of our married life. If I were to loose him and look back at the past decade I would want to have adventures and laughter and love along with arguments and break downs and hugs to remember. Scoring scans and blood work all in the same day, excessively worrying about scans only to find there was nothing to worry about and not interacting and enjoy life together isn’t what I’d like to have left. 

Sure it seems like caring less would make loosing them easier, if that’s even a thing. I don’t even think most people make that choice consciously. We’re humans and we are set up to protect ourselves. So taking steps to avoid pain and discomfort are part of how we’re wired. Just one day you wake up and you realize that you’ve become just roommates without you realizing it. We all deal with protecting ourselves from pain differently. 

However, I think the pain of loosing someone you love can’t be diminished by closing yourself off from loving them before they go. It just makes it worse because you lose them and realize that you wished you had more time with them and wasted the time you were gifted. 

You’re stronger than you think. I know that you can choose life and love instead of  putting life on hold and giving up on enjoying things together. 

There are ways to love your life in spite of caregiving. 

Thanks for listening.