The Challenges of Being a Caregiver

grandmother sits happily smiling beside granddaughter standing hugging from behind
by Vance Larson

You’re dying. And I resent you. I have heard this on more than one occasion. A family member of a loved one who has been sick for years, or their loved ones impending death has long exceeded their prognosis. They aren’t mentally prepared, and they have not taken care of themselves. Now, they are caught in a world of shame, guilt and resentment.

Many years ago when I first arrived on the mental health scene, the population I was working with was HIV/AIDS. It was the late 80’s/early 90’s and the life expectancy for a person living with AIDS was about 6 months to a year. While providing family support groups, the trajectory was known, and working through emotions were pretty clear. While it was never easy, being able to get ones house in order and orchestrating final wishes became second nature. The family could plan, make amends or spend their final days anyway they felt. Then many years later with the advancement of treatment options, people living with AIDS were living longer, and that changed the game. Now a days, HIV/AIDS is considered a chronic illness. What happens when the game changes? Many things. But what is important to recognize is that caregivers are dealing with their own process as well.

What happens when your world is turned upside down and your loved one becomes ill with a prolonged injury or disease? Of course there are concerns. There are nightly prayers and there isn’t anything you wouldn’t do to help them. But weeks turn into months. Months turn into years. Some start to suppress their feelings. They neglect themselves. In many cases they lose their identity. First your loved one shows signs of improvement, then all of a sudden there is a significant change (for the worse). It has become an emotional roller coaster. Where the highs are high and the lows are lows. And given enough time, the caregiver sometimes will not care. They are burned out, resentful and start having all sorts of unhealthy thoughts. And now they’re sitting in my office, or some other professionals office carrying a load of shame and guilt.

When a client comes to see me whether as a coach or chaplain (for this type of scenario), the first thing I do is listen. And then I listen some more. After providing family/caregiver support groups for 20 years, I have found that one of the greatest needs is to let them speak. While some people are natural born caregivers, most are not. Most of my clients never dreamed that they would be in this position. And with them tending to the needs of their loved ones, their needs often get lost in the shuffle. And sometimes all you want to know is that you’re not alone, and that you’re not crazy. There is great value in that. Why do you think a group like Al-Anon is world wide? Because people need to vent, and they need to know that they are not the only one dealing with these feelings and emotions.

I have heard things like “It would just be easier if they died.” Or, “I resent that I have to take care of them.” Which is usually why they end up in my office with a ton of guilt. I have to explain to them that this is pretty common. Both guilt and resentment can take place in the head space of a caregiver. The question is, what are you going to do with it? And usually (not always), just by acknowledging that, there seems to be a sense of relief. But now that we know that it’s there, how do we combat it? And the answer to that is open communication.

First and foremost a we need to be open with ourselves. That means knowing that some days, you literally don’t have anything left in the tank. So you’ll need to have a exit strategy. An exit strategy could be something as simple as calling a friend or professional over so you can get out of the house. Be it for an hour or a weekend. You cannot put your life on hold indefinitely. You have to pour back into yourself. Make time for you. The second step is to be open with your feelings with the loved one that you’re taking care of. It’s okay to talk about your fears and frustrations. You may actually be surprised. By allowing them to shoulder some of your concerns, this can at times level the playing field. And that can be a game changer as well. Many times allowing them to be an active participant in the relationship again, can reduce not only your resentment, but give them a distraction, as well a sense of being needed. And to the person that is sick, having something bigger than their pain often produces a beautiful result.

Having resentment and guilt does not make you a bad person. It makes you human. And both shame and guilt are an indicator that you are not healthy. My guess is if you’re still reading this article, you’re living with some shame and guilt of your own? You must now ask yourself what you need to work towards wellness again? Caregivers are human. Just the other day I was talking to one of my clients. She is a 20 something mother with 2 kids under 5 years old. She said “Vance, I just want to pee. But my kids always need some bullshit.” I just cracked up. When she realized just how crazy that sounded, she instantly felt relief. It’s okay to have needs when you’re a caregiver. It’s okay to set boundaries too. It’s not okay however to ignore your feelings and continue to put yourself last. Because when you do, shame, guilt and resentment are soon to follow. And then you’re paying for an office visit, when you could be spending that money on something fun for yourself.

So there it is. Given enough time, you’re going to have some pretty dark thoughts. This is to be expected. But by not suppressing or denying your feelings, you can effectively move through them, bypassing guilt and resentment. The key is to realize that you’re not alone. And you’re not a bad person.

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