Sad as it is to think about, COPD is a terminal disease. Everyone who develops this condition will eventually succumb to it. The good news is, that it can take years to get to that point, depending on how early the diagnosis was made. And it is possible for both the patient and their caregivers to have many quality years after a diagnosis, as another expert, Jane Martin, discusses in her article, “Healthy & Happy with End-Stage COPD.”
But at some point, your loved one will near the end of his or her life. Heart problems may complicate the course of COPD (as described in this article by Dr. Kaufman ) or you may notice increasing severity of breathing problems. Whatever the symptoms, if you’re paying attention, you’ll realize the end is coming. No one can say exactly when or how for sure, but it is going to happen, sooner rather than later.
As this final stage gets underway, something else that is inevitable are the strong emotions that accompany it, both within you, the caregiver, as well as in your loved one. Finding a way to deal with these emotions is essential, if you hope to ease into this transition between life and death.
In my series of posts that dealt with caregivers working through the grief process after a loved one is diagnosed with COPD, I discussed some of these emotions and gave you ways to cope with them. Chances are, when you realize death is coming, those same emotions (and maybe a few more) are going to get churned up again, perhaps even stronger this time around.
You may not want to believe or accept that your loved one really is going to die soon. Or maybe you feel intense anger or frustration that time is running out or that your loved one couldn’t stop smoking in time to prevent COPD from developing. At times, a pervasive sadness and loss of hope may be what you feel.
I understand… I’m right there along with you. My mom was diagnosed with COPD (after a lifetime of heavy smoking) about 4.5 years ago. For the first 3.5 years, even though she did go on oxygen, she still seemed pretty healthy. We wondered if she really even needed to be on oxygen. But the last 6 months, I’ve watched her get more and more short of breath to the point that ANY exercise triggers wheezing and wears her out – even just walking to the bathroom or eating dinner – and that’s on 4 LPM of oxygen. It seems obvious this can’t go on much longer. So I’m experiencing this storm of strong emotions most every day.
It’s hard to lose someone we love, especially if you’ve been heavily involved as a caregiver. Whether it’s a strong relationship or not, it’s almost always going to be hard to let go when the time comes.
You may also find that your strong emotions are changing from day to day, or even hour to hour. One minute you’re down in the dumps and weepy, while the next you find yourself getting mad over the smallest frustration. Feeling guilty is pretty common too, guilt over not being a good enough caregiver or guilt that you can’t stop the disease from progressing. Feelings aren’t always rational, but that doesn’t make them less real.
It’s tough to control how you are feeling, but if you want to help your loved one die with dignity and peace, you have to find a way to work through this time.
Tips to Help You Deal
Maintaining the lines of communication with your loved one is a great place to start. Both of you should talk to each other openly and honestly about how you’re feeling and about what’s happening. Include other close family members and friends in some of these conversations too.
Sometimes counseling, especially from a spiritual advisor, can be immensely helpful and comforting during these times. If you have a pastor, contact him or her to come out to the house and meet with you and your loved one. Spiritual beliefs, if you have them, can also help provide hope and meaning to the end of life.
As a caregiver, this is the time when you must really be careful to take good care of yourself first. Get plenty of rest, eat healthy and manage your stress by taking time off to meditate, dance, read a book, laugh on the phone with friends, take a warm bath with candles and a glass of wine… whatever relieves your stress and helps you recharge your batteries. You’ve got a lot to deal with and it’s OK to do something for you at this time: you deserve it. And it will help you be a better caregiver too during these hard days and weeks.
Most of all, remember that even the strongest of emotions will usually ease over time. Yes, it is sad to lose someone you love and have cared for, but the loss will get easier as time passes. And eventually, you’ll realize that they have gone on to a better place, where they no longer struggle to take a breath, and you will start to feel happiness and joy once again.
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.