When I began caring for my mom, the ebbs and flows of caregiving didn’t come with a handbook. While handling my emotions at different stages of my mom’s illness, I found myself winging it much of the time. Situations changed at such a rapid pace, I hardly had time to react, let alone to breathe through the chaos. It wasn’t until my mom’s passing that I took time to understand the emotional stages I went through during her care. While each journey is different, understanding and overcoming the emotional stages of caregiving, are the same. Can you relate to any of these stages?

Stage 1: The Role Reversal

In this stage, the caregiver, or care companion, reacts as a parent, as their loved one becomes the child in need of care. Age in this stage is unimportant; but the amount of care required is the focus.

Often a traumatic event, whether the result of a serious accident or diagnosis, catapults a person into the caregiver role. And this role is not for the faint of heart. It requires additional responsibilities most people have not prepared for. The care companion must navigate new responsibilities and challenges in addition to an already fully obligated life. Not everyone is ready to be a caregiver. Once establishing their role, reality sets in and caregivers begin to panic.

In the beginning, there is no schedule in place to make things easier for the caregiver.

Managing appointments and making their loved one(s) comfortable is all one can do. But time is not kind, and management proves challenging. Caregivers now thrust into a reactive free fall, rush to familiarize themselves with information, evaluations, and a prognosis they may not be ready to hear. The medical staff throws care options around; and the caregiver is trying with all their might to keep up.

Suddenly, you are making important decisions for your loved one’s care. This new role’s impact leaves you deeply saddened and overwhelmed. Your loved one grieves the loss of independence. The roles have reversed when you realize anger and resentment toward others because your time is no longer your own!

Stage 2: The Floodgates Open Up

This stage can be quite overwhelming with intensified feelings of insecurity and anxiety. And throughout the day the caregiver questions every decision, especially those regarding care options for the diagnosis. Care management, appointments, medical/insurance questions, and searching for a care team are now part of your daily tasks. The negative self-talk is at the forefront of your mind… and you wonder how you will get through it all. Your loved one’s care has now become a priority… and yours is at the bottom of the list!

There is so much to think about whether a traumatic event, or serious diagnosis occurs. What do I do first? How can I help my loved one? I’m supposed to navigate their care; but I don’t know what I am doing. My life is already busy, how do I fit my to-dos in it? Most importantly, am I forgetting crucial elements of their care?

Decisions are coming at the caregiver so quickly there is only time to react.

Your life is already  challenging, and now the floodgates open with serious expectations. You are drowning in to-do lists. The more involved you become, the more responsibilities increase. Your  emotions leave you unprepared. Anxiety, resistance and resentment toward you are front and center as your loved one struggles. They lash out at anyone standing in their way as they try to remain independent. 

Family members resist involvement; now you question their emotional support. Navigating these challenges is draining the life out of you. Sleeping to recharge your mind proves difficult. You wish someone would step in to help relieve the pressure, but everyone is busy living their own life. The aftermath of turmoil continues chipping away at your core. A life raft is essential to survival when you are drowning; but yours is nowhere in sight!

Stage 3: Your New “Normal” Life

This stage hits you the hardest as your direction and expectations become clear. Life as you knew it has changed drastically. Your time is no longer your own. Your schedule has changed to include their needs and care. They have become your priority. Your days now include never-ending research, doctor appointments, physical care, and medication management. Your first thought each morning is how will I get everything done today? It hits you right between the eyes when you realize this is what you’ve signed up for.

This ‘new normal’ has no expiration date. 

As you become fully aware of your commitment and the care needed, managing daily tasks makes things easier. Decisions become more difficult, and the future is unclear. Your level of self-care decreases significantly as their level of care increases. You begin to withdraw from family and friends because there is not enough time in the day for you.

Your anxiety is off the charts and your emotions are out of control. And you wonder if anyone can relate to what you are going through. Your friends offer support, that is until you reach out for help. It proves too much for some who quickly excuse themselves and hurry off the phone. Perhaps unpleasant memories trigger their emotions. So, they remain at arms’ length and engage only on the surface. They support you from a safe distance and wonder, who would willingly put themselves in this position?

Throughout your care journey, you have been desperately seeking support, empathy, and guidance from others. But all you found is despair, frustration, anger, and a lack of compassion. You made a commitment to care for your loved one and going back on your word is not an option. So, you keep putting one foot in front of the other, enduring the deepest emotional struggle you have ever experienced. And when your loved one is finally at peace, you break down.

Stage 4: The Denial

This stage is perhaps the most emotional of all the stages. Your loved one is nearing the end, and extreme sadness creeps into everyday life. The smallest of tasks becomes difficult to handle as you navigate your feelings. Mental exhaustion takes over no matter how hard you attempt to keep it at bay. You are angry at everyone including yourself. Unexplained outbursts become a daily occurrence.

In the blink of an eye your loved one quickly declines and everything is in turmoil. Down the rabbit hole you both go!

The doctors tell you to prepare for the end of life, but somehow you can’t hear them. You are in survival mode and doing everything possible to keep up with their ever-changing medical condition. But it never seems to be enough. One minute life is back to normal. They are laughing, reminiscing about the past, and eating as they did before. The next, they are close to the end. You believe they will bounce back this time as they have done so many times before. You are on the roller coaster from hell and can’t find a way off.

This time, in an instant, the unthinkable happens and they don’t bounce back. You are in complete shock. How could everyone else see what was coming but you? The medical staff, friends and family members tried to tell you, so how could you have missed the end-of-life signs? After all, you spent the most time caring for your loved one; you should have been the first to notice.

Denial is the stage where time stands still, yet nothing seems real. You are hoping this is just a bad dream and when you awake your loved one will still be here. Caregivers stuck in the “what ifs” that play over and over, search for answers that result in a different outcome. But the truth is, there are no answers to satisfy the heart. Acknowledging you did all you could, and forgiving yourself is the hardest part of this stage.

Stage 5: The Other Side of Grief

In this final stage, your loved one has passed away, time has stopped, and grief is holding you hostage. Caregivers exhibit an overwhelming sense of loss, and guilt of not doing enough. Your mind is on replay. Rationalizing how much more you could have done… more patience, more understanding, more comforting, more everything makes it worse! Somehow that isn’t enough. You punish yourself for every decision you made, while reliving the agonizing moments where you feel you failed. The guilt is so heavy, you cannot breathe.

When others tell you they know how you feel, you look at them with resentment. They can’t possibly understand anything about your feelings. There is a void in your heart the size of Texas and your body aches from the loss. Living through grief leaves you in a deep state of depression and sleep deprived, but now for a very different reason. It is hard to imagine your future without grief or how to leave the guilt behind you. Yet somehow, with time, you manage to put the pieces of your once hectic life back together. Things look quite different this time.

The battle scars of caregiving have chipped away at your resilience armor.

As you begin to heal (and you will), you come to realize that you were enough. You did all that was humanly possible to honor your loved ones’ wishes. They knew it and loved you for being there. No one realized how difficult your journey would be. But they were so appreciative you chose to care for them, especially during difficult times. There is no handbook that guides you through the emotional stages of your care journey. No one tells you how difficult caregiving is, let alone how the guilt leaves you paralyzed if you let it.

I am living proof that no matter how difficult the journey becomes; you are so much stronger than you realize. People are waiting in plain sight to love and support you, to be your sounding board if you let them. I have the battle scars to prove that I am more resilient than when I began. A lifetime of wonderful memories is the one thing that keeps me going at times!