Family Support Is Critical
I was diagnosed with severe COPD on my 63rd birthday. I knew something was going on so I intentionally made an appointment to see a Pulmonary Specialist as a birthday present to myself.
I went alone to that first appointment not expecting to hear things were even worse than I thought. Three years later I continue to go by myself dutifully as need to do my best to slow the progress of this disease down. I don't purposely go to my appointments alone. But I have no choice because those I hoped would be there for me simply have chosen to turn a blind eye to this disease and how I am being impacted by it. I can somewhat understand why my adult bipolar daughter doesn't want to be bothered as her mental illness 100% affects how she engages with me as her mom. In her mind, I'm not allowed to have a disease that could and most likely will shorten my life span. It would mean she would have to learn to survive on her own. She is simply not in a place mentally to be able to do that as long as I am capable of caring for myself, albeit at a much slower pace than before.
My son is a busy father of 4 active sons, is a business owner, and also works full-time outside his own business, in the industry that his business is built upon. Photography and videos of many aspects of our outdoor environment through the use of drones. The company he works for focuses on the agricultural aspect. His private business is real estate related. All consume much of his time and he, I believe, is in denial to some degree about where my future lies. All children want to believe that their parents are invincible.
But the most critical support one needs when married is that of their spouse. And mine has made no effort to learn or understand this disease and what he can do to make my quality of life much better. He is seemingly indifferent about it all. He can see I struggle to do simple household chores that will keep our home clean and clutter-free. He has never asked how an appointment may have gone, and I have so many more after being diagnosed in 2019 with stage 1 lung cancer. He cannot even tell you when my last CT scan was or what it showed.
But this is not about me having a "pity party" for myself. This is to educate family members who have someone recently diagnosed with COPD and stepping up to support them 100% from the day they are given the diagnosis. Their ability to accept, adapt and continue to live the best possible life they can is significantly inhanced when those they love join them in their journey.
I have never felt so alone as I do right now and if you are a child or a spouse of someone with COPD I would urge you to take steps now to let your loved one know that they are not alone in this journey.
Don't wait to be asked to drive a parent or spouse to yet another appointment, just do it. Be dressed and ready to go as they get ready to walk out that door thinking, once again, it was just them going.
Don't wait to be asked to help clean the home or do some laundry, just do it. If a child and you see that your parent is struggling to manage despite the other adult in the home, intervene and start doing what needs to happen to make sure your parent with COPD is living in a clean, uncluttered and chaos-free environment or hire someone to come in to restore order. If not possible to do that because the other adult is resistant, help the parent with COPD find a new place to live that is clutter-free and easy for them to manage and regain their independence. Do whatever needs to happen to ensure their quality of life is not being unfairly compromised by another person in the home unwilling to see the writing on the wall.
Don't presume that we will ask for help as most of us won't as we, ourselves, are fighting in accepting this devastating diagnosis. Most of us worked hard our entire lives, and many of us are used to being the caregiver not the recipient of extra care. It can be an issue of pride. It can be an issue of not wanting to burden others. But whatever the reason may be, don't allow us to just accept things that can be fixed and will significantly improve our quality of life. My saving grace at this point is my son has finally opened his eyes enough to see my situation as it is now is the worse possible scenario for me long term. He is working with me to find an apartment that I can be happy with and enjoy living independently in a much safer and healthier environment. We just have to decide if that means remaining in the state I currently live in or moving to another where I have a large retired Navy community that will become an unwaivering support system in managing my life with COPD. Those roots sometimes run deeper than blood family. We have an entire winter to figure it all out.
Just know, that the key in living a longer, more productive life as a person who just happens to have COPD is the hands on involvement of your family from day one that will significantly enhance your overall quality of life. Don't be me. And family member's don't be mine.
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