More often than not, I suspect caregivers of COPD patients will be either spouses or grown children. Either way, the changes you see in your loved one will require a tremendous adjustment. I say this because by the time a COPD patient needs caregiving support, they are probably in the latter stages of the disease, debilitated to the point where they have become dependent on others, at least in some fashion. So, my remarks are addressing that perspective.
COPD takes a toll on the person you are caring for that can be heart-breaking to watch. You see your loved one struggling to get through even the basics of daily living – dressing themselves, toileting, bathing, even eating can induce shortness of breath, labored breathing, coughing and the need for frequent rest stops.
The bottom line, at least as far as I’m concerned, is that the person is no longer the same person you’ve loved all your lives together. He or she is now just a feeble, fragile imitation of that person. And with that realization comes the grieving process.
Experts tell us that we grieve in stages, not necessarily sequential, but most people do experience all 5 stages. They are:
- Denial, where you refuse to believe the person truly is in the end-stages of COPD and is not going to get better
- Anger, where you rail against what is happening, how unfair it is, and look to place blame
- Bargaining, where you want to believe that if you just do the right thing, it might change the outcome or somehow save your loved one
- Depression, where you are extremely sad, lose hope and feel as though it’s no longer worth even trying
- Acceptance, where you finally accept that what is happening is the way it is, and learn how to cope in a positive way, treasuring what time you do have left with your loved one
Although it’s common to go through these stages in the order listed, it doesn’t have to be that way, and sometimes you’ll go back and forth through the early stages before you finally reach acceptance. It’s a difficult process to go through, but ultimately it IS healing. Remember too, that at the same time you’re going through these stages of grief as a caregiver, your loved one is also going through them, and not necessarily at the same pace or sequence as you are.
It’s important to recognize where you are in the process, so that you can keep moving forward. It’s the only way you can be an effective caregiver and also stay healthy emotionally.
So, where am I in this process? Well, I’d say after nearly 2 years in the caregiver role, I’m pretty much waffling between depression and acceptance most of the time. For the most part, I’ve accepted the changes, though they do still make me sad and I mourn the loss of the mother I was so close to most of my life.
Over the coming weeks, I’ll be profiling each of these stages in more depth, and providing tips on how to work through them effectively so that you can be strong in your caregiving role. For now, if you’re a caregiver, feel free to comment here on how you’re dealing with the changes in the person you’re caring for. If you’re the person being cared for, we’d love to hear your side of the story too.
In This Series:
Stage 6: Accepting the Diagnosis/Prognosis and Moving On
Kathi is an experienced consumer health education writer, with a prior career in nursing that spanned more than 30 years — much of it in the field of home health care. Over the past 15 years, she’s been an avid contributor for a number of consumer health websites, specializing in asthma, allergy, and COPD. She writes not only as a healthcare professional, but also as a lifelong sufferer of severe allergies and mild asthma, and as a caregiver for her mother with COPD.