A COPD Caregiver Intro

Hi. I’m kinda new to this so bear with me a bit. I’m a primary care-giver for my wife (Michelle) who has pretty advanced COPD. I’m also disabled in my own unique fashion. I have a congenital joint condition known as Ehler Danloss Syndrome. If that’s not enough we have a 14 year old with his own unique challenges (other than just being a teen).

I thought I would write a bit about what it’s like to deal with disease from the other side of the stage, or as a care-giver.

First you’re going to see someone who was healthy and active...stop, as in stop being totally healthy. It can be gradual or very very sudden. By that I mean things that you take for granted like walking to the mailbox and back, they may or may not not be able to do most days. Fixing a meal may be possible for them some days..with help. Other days the thought alone will be smothering. There will be days or even weeks they will spend on bed-rest dealing with symptoms resulting from an exacerbation. Even getting up to eat and watch a show will be too much to even think about. But there will be days they feel great and it may fall on you to help them not overdo it so as to cause a relapse.

You and they are going to have emotional issues to deal with.

They’ll range from disbelief to anger, sorrow and others. You’re going to be spending a lot more time at various doctors trying to find a treatment regime that works for their condition. You’re going to have to decide what you HAVE to do versus what you WANT to do. Some things will have to be “okay” rather than perfect. It can and will be a serious challenge to you physically and mentally.

You will learn different techniques to help, such as being alert while walking as they could collapse at any moment. You also may be dealing with aids ranging from a cane, walker, wheelchair and possibly portable oxygen. As this can be an invisible illness you will end up dealing with questions from friends, family and the public..ranging from disbelief to what can they do to help.

You’re going to get much more experience at checking medical bills and knowing what is covered by insurance and what is not. Some of the medical costs can be .... extreme. You will also realize a new form of flexibility as the need to change plans can come up at the spur of the moment. Things that were easy and routine will now require pre-planning to be sure of. It’s always a good idea to have fallback plans.

Is this meant to scare you? No!

But perhaps it will provide an insight into what is possibly coming in the next months and years. Life can still be good, but it may require effort to modify the way you deal with many things.

Does it mean life is over? No! But it will change and rest assured you can deal with it if you try.

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