Preparing for the End Game - When the Battle to Live Is Ending - Caregiver Perspectives

  • Living with COPD isn't always easy, but with the right treatment, mindset and lifestyle, it is often possible to live a quality life for many years after you receive a COPD diagnosis. My mom did -- sometimes we found it hard to believe she even had COPD!


    But sooner or later, those overtaxed lungs start to stop working more and more. Breathing gets ever harder and simple activities like eating and getting dressed in the morning become more and more challenging. Shortness of breath and coughing become a constant companion.


    For the caregiver, it becomes more and more obvious that you really ARE going to lose your loved one, possibly soon. And it's so hard to watch them struggle just to live and to do normal daily activities.

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    How Do You Know When the End Really Is Coming?


    It's so hard, though, to know exactly when the end is coming. Sure, you can see that things are getting worse and worse, but people can live with really limited lung function, sometimes for years. The body has amazing adaptability powers. It might be a very limited life, but it's still life.


    Doctors don't like to predict end of life either. In my opinion, it's hard for them to admit that they've "failed", that they can't "save" every patient. After all, their training is all about curing and healing. But doctors are only human and there is only so much they can do.


    However, even if you can get a doctor to give a life expectancy, they could still be wrong. I chalk that up to the mysterious human spirit and will to live. People can sometimes keep going for weeks or months after they should have succumbed, because they are looking towards a goal, such as a child's wedding or graduation or a grandchild's birth.


    So, there is no way to know for sure when death will come. But there are some signs that it is coming. A hospice nurse recently gave me a small pamplet, called Gone From My Sight, by Barbara Karnes. It provides typical symptoms broken into:

    • 1 to 3 months prior to death
    • 1 to 2 weeks prior to death
    • 1 to 2 days (or hours) prior to death

    When my mom passed away recently, I found them to be remarkably accurate. Unfortunately, I didn't read the pamphlet until after she'd passed away.


    You can also find information on signs that death is approaching here: and at the Hospice Foundation of America's website.


    Needing Time to Wrap Things Up


    When someone you're caring for is dying, there are generally things that need to be talked about before they are gone. Perhaps, you want to relive some treasured memories and let them know one last time how much they've meant to you throughout your life. You want to make that last connection before they are gone from your life forever.


    Your needs may also be more mundane... Where do you keep your will? What kind of funeral arrangements do you prefer we make? Is there anyone you want me to make sure I notify?


    The doctor said she'd definitely survive the holidays, but after that, who knew? So, I thought we had time to do all the things I outlined above.


    What the Dying Person Needs From You


    When it takes years to die, the patient is often quite tired and ready to stop fighting when the end finally comes. I know my mother was. She had such a lightening of spirit when the doctors told her further recovery was impossible. That might seem weird, but I think she was relieved to have permission to let go and stop the daily battle of trying to keep living.


    So, your loved one needs your acceptance of their willingness to let go. They don't need your judgement, your wanting to keep fighting or your denial. They need to talk about it and to know you'll be OK with it all too.

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    They also need to know you'll be there to comfort and support them as they take their final breaths.


    What You Need as a Caregiver


    Get all the help and support you need during these final days, weeks or months. Accept hospice, if it is available. Your loved one needs you to stay strong, but that's hard to do without your own support.


    But you also need to tie up loose ends. Don't leave them till the "right time" comes. You need to make time now, because the right time may never arrive. You don't want to have any regrets or guilt because you didn't make time to say what needed to be said.


    I Ran Out of Time

    My mom, though she'd been slowly deteriorating for years, got really sick in a hurry, when I was out of town. I rarely left her, but my husband urged me to visit a new grandson early in November of this year. He said he and Mom's sister would hold down the fort, so off I went. A few days later, Mom went downhill quite suddenly and was hospitalized.


    Before I could get home (I was 2000 miles away), they'd determined there was nothing more they could do for her and referred her to hospice, with the goal of sending her home for whatever time she had left.


    By the time I got back, plans for already afoot for getting her home and the next few days passed in a whirlwind. My husband and I saw our lifestyle evaporate before our eyes, with the prospect of being chained to the house 24/7 for months, while Mom slowly got worse.


    The day for coming home arrived and for Mom, it was a wonderful day, coming back to her home and her beloved puppy and celebrating her last birthday with her sister. She got several vases of flowers and a bunch of beautiful birthday cards. She settled into a remodeled bedroom, outfitted like a hospital room and even had her favorite dinner of a Subway sandwich.


    Meanwhile, my husband and I endured 4 hours with hospice staff trying to get everything set up and learning all we needed to know about our new ramped-up caregiver roles. By the time Mom went to bed that evening, we were all exhausted.


    I determined to make time to talk with her that weekend about legal and financial issues, and also to tell her again how great a mother she was to me as I was growing up and how much she'd meant to me all my life.


    But when I arose the next morning, I found she'd passed away during the night. I could see the blessing in that for her, to be free from suffering, to pass so peacefully and to have done so on one of the best recent days of her life. But I'd waited too late to talk with her about all that needed to be said.


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    So, I hope you can learn from my experience and take action while you still can.

Published On: December 08, 2011