To my Family: Please understand, these words are to try to help someone who has received the diagnosis of COPD. They are NOT meant to down-grade any one of you in any way. I am thankful I had enough sense to ask for your help when I needed it! Thank you for being there when I needed you! I couldn’t have made it without you!
I feel the need to explain what happens with the diagnosis of COPD because there are so many people out there who feel they can handle it easily and it is not big deal. You are so wrong! It will drain every ounce of life and energy from you.
If you or someone you love is diagnosed with COPD, please do not ignore the diagnosis and think it will just ‘go away’. It won’t! It may take 20 years, 10 years, or even only a year before the symptoms become horribly worse. (Daddy received the diagnosis about 10 years ago, I think, but probably had it for 5 years or more before the actual diagnosis. It really wouldn’t have mattered if he had stopped smoking at the time of diagnosis because the irreversible damage had already been done. It can’t be completely blamed on the cigarettes either… he was in direct contact with asbestos every day of his working years.)
It starts with ‘shortness of breath’ and an inhaler for rescue. Then you move up to breathing treatments once or twice a day and eventually four or more times a day. Next comes oxygen along with the breathing treatments and massive amounts of pain and comfort meds. The body becomes weaker as it struggles to breathe. (The lungs need a lot of protein to function.) Food is no longer desirable since it takes so much energy for the lungs to function and the energy it takes to chew just one bite of food is no longer worth the trouble.
This disease has no cure and will only get worse with time! Please do not think it won’t because it has no where else to go but down. It is NOT reversible and it will NOT just go away! I can not stress that enough!
If you are a child of a parent with COPD, be prepared to see your parent as a child. That is what they become. You will begin to see them as a two-year old in their “terrible two’s”. They can’t help it. It just happens. Be prepared to be a parent to your parent! It’s tough! I can’t tell you just how difficult that is. To be a parent to a parent is probably the worst thing you will ever experience. At least with a two-year old you can discipline them… How do you discipline your parent?! (Never did figure that one out!) Except “NO” seemed to work, most of the time.
I suggest you make sure you have enough money tucked away to pay someone to be a full-time caregiver (unless you don’t have a job to get up for every day because you will certainly lose your job…you will be there 24/7). If you must put them in a nursing home and they have not made provisions for Long Term Care, the nursing home will get every penny and possession they own and it will NOT be returned, ever! Everything they have worked for all of their lives will then belong to the nursing home. Make sure you have cleared their names of any real estate, cars, bank accounts, or any personal possessions. (I think the Statute of Limitations is 7 years… someone please correct me if I am wrong.) All I am saying is, “Don’t put this off!” When it is all said and done, the state (or nursing home) can and WILL take it from you. (Thank heavens I had enough sense to clear Daddy’s name from any property deeds and personal possessions when my Mom passed away 15 years ago.) Even if you plan to take on the task of caregiver yourself, you seriously need to remove their names from any possessions! It is only for everyone’s best interest!
If you are as blessed as I was to be home with my Daddy 24/7 the last three years, you must understand that you will no longer have a life. It won’t matter if you are sick for a day or more, or have your own personal problems. Your freedom to just walk outside is gone. You will have to wait until someone can relieve you because they can’t be left alone any longer. They are dangerous to their own self, not to mention the house and everything in their lives. They have lost their ability to think on a rational level even though they think everything is fine and they are still in control, they are NOT. (They become disoriented and confused for lack of oxygen.) The COPD patient will consume your life. You will be what sustains their life for however long that is. Are you really prepared for that? You need to think about it! It is a very difficult road.
The last six months of Daddy’s life was under the care of Hospice. When he became confused on a daily basis, I knew it was time to switch from Home Health to “end-of-life services”. I thought I was making a mistake but I look back now and realize it was the best thing I could have done for him, and me! Please don’t put off that decision! All you have to do is talk to the doctor for an order. Hospice will not only take care of the patient, but the caregiver(s).
Trust me, you may think you can take care of them and it’s no big deal, but it will be one of the most difficult things you will ever do in your life! Don’t just assume all the family will just pitch in to help. They won’t! You will have to ask because as long as you handle it, everyone feels it is all under control.
When I began asking my family for help, they were there, but I was still the only one there 24/7. — I couldn’t have made it through the last few months without my sister-in-law, especially! — But, there weren’t any offers to stay the weekend so I could get away from the nightmare I was going through for even a couple of days. (I didn’t ask. I just hoped someone would offer, I guess.) I was the one who had to listen to him struggle to breathe at night or call for help in the middle of the night… I haven’t had a vacation since 2010 when I went away for the weekend in October and had been several years until then.
I am begging you, please understand how difficult and painful this disease will become; not just for the patient but for everyone, especially “the” caregiver. Even though I am so thankful I could be there for him, it put a strain on my life and health. If you have health problems yourself, please think about your own abilities. As much as you want to be there for them because they were there for you, think about what it is going to do to your own body. You will never completely understand what I am trying to tell you until you go through it yourself.
My Mother had cancer (never sick a day in her life until then). My Daddy had cancer four times! Neither was as bad as COPD! Please, please, please do not ignore the diagnosis! It will not go away unless they are fortunate enough for God to call them home some other time and way before it gets so bad.
Dear Lord, thank You for today and everything in it. Lord, please let my words help someone to understand what they will face and how they need to prepare for this horrible disease; and they can not do it without You! I know I couldn’t have made it without You by my side every step of the way and I know that is why I lost my job when I did. Thank You for being there with me! Please open the next door for me and let me have Your sight to see it open when You do. In Jesus’ name, I pray. Amen.