Moving Through the Stages of Grief as a COPD Caregiver

I was my mom's primary caregiver during the last four years of her life and I know how hard it can be to watch and cope with the many changes in your loved one. Chances are, by the time someone with COPD needs a caregiver on a regular basis, they are in the last stages of the disease. This is a time when they are losing their independence, having extreme difficulty breathing when doing anything and struggling with the changes they're seeing in themselves.

As a caregiver, you can feel helpless and heartbroken watching what your loved one is going through. There is very little you can do to change what is happening. As that realization strikes home, you enter into the grieving process. Experts tell us that when we grieve, we go through various "stages" of that grief.1 Elisabeth Kubler Ross was a Swiss-born psychiatrist who originally identified the stages of grief and loss in those who were dying.2 Her work has subsequently been adapted for those left behind as well.

It's important to understand that the process of grieving isn't always linear. In other words, you may not go through the stages in the order listed here. And you may go back and forth between the stages a few times.

The stages of grief

The five stages of grief are:

  • Denial, where you are not ready to accept your person is at the end stage of life and will not get better
  • Anger, where you feel intense emotion and want to lash out at someone, anyone in retaliation for your pain and helplessness
  • Bargaining, where you still hold out hope that if you do something right, you can change the outcome for your loved one
  • Depression, where you feel the sadness and loss of hope and consider just giving up
  • Acceptance, where you accept the inevitable and begin to move on in a positive way

These stages provide a framework for coping. Think of them as tools for understanding how you are feeling. But also know that the grief process is unique for each of us. And that's OK. Let's take a closer look at each stage of grief.

Denial

Denial is often the first stage people enter when they begin grieving. That's because it helps us deal initially with the reality until we are strong enough to truly deal. When you're in denial, you may be in a state of shock, not wanting to believe what you are seeing and experiencing.1 In other words, it's a kind of defense mechanism that allows you to feel numb to the pain and the facts.3 Think of it as a kind of mask. In most cases, it's a temporary response and you will move out of it as reality truly sinks in.

Anger

Anger is another necessary part of healing and coping. It's not "bad," and you should not feel ashamed if you are angry. It's a natural response to how helpless you feel. In some ways, anger can make us feel stronger and more in control. And it doesn't have to be rational. It may be directed at your loved one, the doctor, yourself, or anyone in range. It can even be directed at inanimate objects.3

Don't shove anger down; when you acknowledge this intense emotion, it begins to lose its power over you. It may help to think of your anger as an expression of the depth of your love for the person that you're caring for.1

Bargaining

In this stage, you want to do anything to prevent the deterioration and ultimate loss of your loved one. If you're spiritual, you may pray that if you just do something (or don't do something), that God will please spare your loved one. If the loss has already happened, you may bargain that if you dedicate your life to some cause (or whatever), that you'll wake up and realize this was all just a bad dream and your person is still with you.1

Another aspect of bargaining can be after the fact "what if" or "if only" kinds of statements, such as:3

  • What if I quit smoking or get my loved one to quit smoking?
  • If only I had nagged him to quit smoking sooner...
  • If only I was a better wife, daughter, etc. to my loved one...
  • What if I had made him go to the doctor when I first noticed him coughing?

Guilt often goes along with bargaining. Believing that you could have done something to help save your loved one, but didn't, can result in guilty feelings. Although those are legitimate feelings, they are not based in reality and should be let go as you move on.

Depression

Depression occurs when we begin to truly acknowledge the reality of what is happening.1 It's natural to feel sad and empty and perhaps even to lose hope temporarily. This type of depression is not a mental illness. It's a perfectly appropriate response to loss and one of the necessary steps in grieving and healing.1

The sadness can also be compounded by the realization of the need to start making plans for the end and moving on. It's not unusual to feel a bit overwhelmed at this stage. But it is also part of your preparation to say goodbye to your loved one.

Acceptance

Accepting doesn't mean that you're OK with losing your loved one or watching them suffer. It simply means that you have accepted what is happening is a new reality and that you are coping effectively with that. It's about learning to move forward in a healthy way, for you and for your loved one.

Coming to a state of acceptance doesn't mean giving up or giving in. It simply means looking to enter into a state of grace or peace. This will help you to savor those last days, weeks, or months with your loved one and to live your best life in the process.

Coping with the role of a cargiver

It's essential to recognize where you are in the stages of grieving. It's crucial in learning to cope with your role of caregiver and to be effective in that role. If you can't stay healthy emotionally, it will be hard for you to help the person you care for.

Remember that coping with loss is always a uniquely personal experience. Allow yourself to feel the grief as it arises, no matter what stage you happen to be experiencing. Ultimately, it is the key to your own survival and emotional health.

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