Hi RosaleeC! Before I went to the pulmonologist my husband would get somewhat irritated with me for not being able to do things. Bob is a very calm person, so it rarely turned into an argument. Besides I don't have the breath to argue anymore. But he went with me to my doctor's appointment and that changed his mind. He quit kind of blaming me and started really supporting me. It's been almost 3 years since my diagnosis and we do pretty darn good together.

The kids have been awesome from the start. But then my kids are perfect, right? (wink)

None of us like change. Everyone deals with it differently. Not only did my life change, but my familys did too. Wrapped up in my own cycles of anger, denial, annoyances, etc. , It took awhile for me to also appreciate that they were having just as much trouble adapting as I was.

I believe the biggest issue for my family and perhaps for most of us is I didnt look sick, (actually after my heart attacks and subsequent repairs I was a tad healthier), just suddenly whiny and lazy. Smile.

Wow, we both have perfect kids!! What a coincidence! :) I haven't told my two youngest children, only my 19 year old. My other two sons are 9 and 14. My husband is the type who won't ever go to the doctor and doesn't want to know if anything is wrong, I on the other hand need to know everything I can. I am hoping once I go to the pulmonologist it will get better, maybe he will go with me and will get a better understanding...

I can still walk with no issues, my SOB affects me more on stairs and lying down, or with a lot of exertion. I am just so tired all the time, but I don't look sick. I know there is no way for them to understand how I feel when I look perfectly fine. My SOB probably looks to them like I am just out of shape. I need to be more patient and understanding too...

My family just shrugged and said oh well. My wife though took it hard.

Deciding to tell my family was taken out of my hands when I was admitted to ICU the day after returning from our overseas holiday. The diagnosis came as much of a surprise to me as it did to them. No one doubted, pooh-poohed or down-played the problem. Got full support, love and understanding from the get-go. But our troubles doubled when my husband was also diagnosed with emphysema. (no show without Punch as they say), and when this crappy disease tosses curved balls at us, our tolerance levels are sometimes strained. Luckily (odd to say), my kids live 1000's of miles away on the other side of the planet so this disease isn't in their face 24/7. We catch all their hugs and kisses via Skype. :-)))))

I got so carried away with my own story that I didn't answer your problem.

Rosalee, you can't face this disease alone - you need the understanding and support of your family. Perhaps they are too embarrassed to talk openly about it with you, so give them a chance to get used to the idea.

If push comes to shove, you'll have to tear down the barrier that your COPD has put between you and your family and break the silence. They need to understand what you are going through and to feel close to you without being awkward.

Speaking for my kids, they'd be totally p'd off if they were left out of the loop. They want to feel needed, to feel important enough to be told the whole truth and to help in any small way they can. They trawled the internet for information and knowledge about COPD with the result that there are no secrets or soft-soaping the real issues. Even though they are so far away, they know they'll be first in line to be told if anything should change here at home.

So sorry you're having such a hard time. Of course we'll be here any time you need to chat, vent, kick and scream. Take care and special ((((((hugs)))))) for you.

Leonie

Leonie, you took all of my gleaming suggestions right out of my brain. And you said them well.

It is imperative that you have the support of your family and I can't imagine that a family that does not support you. Maybe you need to adopt a new one. Or go spend a couple of weeks with each of them . They might get the message. If not then plan how to do this without their help and be sure and leave every thing you own to charity.

Rosalee, you can always come here and talk or vent. Unfortunately, your family is more important but make do with what you have.

We all understand and have peer love for you.

Rosalee, one thing about family, they get use to the way things are, and change is scary. It is also scary to be talking about a disease they know nothing about, can not see, and have no idea what the future holds .

I would sit them all down at the dining room table, husband too, after you have seen lung doctor, got all the tests and know more, and after you have researched a bit on the internet, (reputable sites only) . Maybe print a few things out for them to read.

I would have this meeting and tell them, you love them, and want them o understand that this disease does its work on the inside of you, not on the outside. So you may look great, but your lungs are damaged and this disease will not go away. But you will be getting medicine to feel better, and doing exercises to get stronger, .

Also tell them you will need their help at times to do things you use to do, but now do not have the energy for, and that things will change a little in their lives, but should not change much (except to you) as long as they can understand and help you when needed.

They are old enough to make their own beds, do dishes, take out trash, etc. Use your own imagination and put it gently enough as to not scare the little one, but plain enough the older ones will realize this is no joke. You will need their support !!!

Pulmonary rehab is exercises that will help you also. The doctor can get you into that. Tell your husband that denial will not make it go away, and you need his understanding, strength, and support as you go thru this.

God Bless you and your family. With proper care and no other illnesses , you should live a long, good life. There will be changes, but as a family they can be dealt
with.

BJ

You all are awesome!! You have no idea how much I appreciate the thoughtful sincere responses. My grandfather suffered and died from emphysema and my husband was by my side and seen all he went through, especially at the end. Think he maybe feels if he ignores it he doesn't have to admit it is really happening. My sister makes jokes about it, and my dad acts like he doesn't he hear me which is strange because he is the type to start researching and telling me all I need to be doing.

I will take your all's advice and explain it all once I have my appt with the Pulmonologist to my boys. I think my hubbies will come around once he hears it from the doctor. I just may be venting a lot here until he does! Lol!!

had a similar reaction from my family and wife at first. She did not want to admit that her husband of 45 years [never sick a day] all of a sudden had a terminal illness.
What really helped me was when I convinced her to come with me when I had a doctor visit and sit in with us during the tests and reviews. All of a sudden she started asking questions and seemed like she was really understanding it.
You have to admit, it does sound strange when you go to the doctor come home and tell him you have this strange breathing disease that is like emphysema, but not really! It is like bronchitis, but not really! It is like asthma, but not really! It is terminal and cannot be cured. It was tough enough for me to understand and I am still trying.
My major point is to work very hard on getting them involved!

Well, lotsa luck. My husband, like a lot of men, goes into denial or changes the subject when sensitive problems come up. So I don't try for much support verbally from him. And my sons who live away ask how I am occasionally. But all three are great people otherwise and do help out when necessary. They just are just not ones for me to depend on for sympathy/empathy. I recommend this group and perhaps a good woman friend. Tell her what you need.

everyone gave you great advice, so i just want to say you are in my prayers.
I am so glad your hubby is going with you to your next appointment, as you said, that way he hears it from the dr, but also because i think you need the support when you go.
whenever i go to the pulm, i feel better having someone with me for moral support, but also so they can tell me what i forget because so much is happening that i forget half of what was said.

(i am the one that takes a little recorder with me to the dr, so i can give my full attention & not worry about taking notes. then i can listen back to what was said when i am in the comfort of my home.)
Your father may be in a bit of shock. I know when my sisters were dx'd with their illnesses; all my mom would say is "a mother isn't supposed to outlive her children". As a mother, i would have a hard time hearing one of my kids had this dx...but i would come around and be supportive so be patient with your father.
bless you

my extended family doesn't seem to take my copd seriously but my Mom knows the severity of it since she has a moderate type. I think people are ignorant to anything they aren't able to see or experience first hand themselves. My girls are very helpful with anything I need. I try not to try to make everyone understand my illness & just concentrate on taking care of me. It works for me any way!