Welcome, I'm so glad you've found us. I have not personally had experience in this but I'm sure someone else will. I'm sorry to hear about your mother but from your post it sounds like she's getting some good care and help. Take the time you have with her and make it count, because life is short, for sure.

My brothers and I have cared for my 86 year old father who has COPD for many years. 10 years ago he was "end stage", on continuous o2 and nebulizers every 4 hours.  Since then he has had numerous times when we were told he would not live, but he pulled through.  However, as I write this, he is rapidly approaching the end of this battle.  He was in the hospital for 18 days. We decided to bring him home, like you with hospice care.  It has been difficult but the right decision.  At first he was eating and drinking, but became so weak that he no longer could walk.  Then eating would wear him out and take him about an hour or longer to eat. Then he began eating less and less.  We began to notice moments of confusion.  Getting him up to the commode chair took two people and exhausted him sending him into respiratory distress. We would give him morphine and crank up his O2.  Two days ago, he became weaker with more frequent respiratory distress episodes. He has not stopped eating and drinking.  Yesterday, when I asked him to squeeze my hand, he did not respond.  His fingers are bluish.  I am giving him morphine every hour because he is laboring so much with each breath.  Everyone is different with COPD. For me, it was the increasing weakness, inability to walk, episodes of confusion, increasing need for morphine to ease his "air hunger" that let me know his time on earth was ending.  It is emotionally and physically exhausting.  I am crying alot; sleeping very little.

My 80-year old father has end-stage COPD.  My 75-year old mother is his primary caregiver.  He's spent two times in a Hospice facility - once for 3 weeks at the beginning of April, then came home and improved tremendously - a miracle.  Then about 3-4 weeks ago he stopped sleeping at night, we attributed it to water retention (9 pounds in a week) - nothing was working at home, so he went back into Hospice facility about 2 weeks ago.  Last few days he's been nauseous, dry heaving, so eating very little.  He asked the Dr. today about his prognosis - Doc said," It could be 2 days, 2 weeks, 2 months," so Dad wants to go home.  He'd rather be miserable at home.  Thank goodness Hospice provides such wonderful care, even at home, as I am concerned about my mother.  She's very healthy, but this is taking its toll on her.  I will be encouraging her to take full advantage of the respite care that Hospice provides, as I don't want her to become sick as well.

COPD is such a horrible disease, slowly taking away the basic bodily function of breathing.  God bless all of you who are dealing with this.

I lost my Dad today.  My brothers and I were in his room.  We had been concerned because he would take a breath,then not breath for 11 seconds or so.  We would shake him and he would breath again.  But then he just stopped breathing and no matter what we did he would not take another breath.  While I know he is now free from the burden of fighting everyday just to take a breath, I and my brothers are heartbroken.  We were all very close and had pulled together to care first for my mother due to renal failure and then for my father.  I feel so lost. 

Joanelai, I am so sorry for your loss, and on Father's Day. Please know we are thinking of you and yours today.

Joanelai, I'm so sorry - you and your family are in my prayers.

Cindra,

My heart goes out to you.  I understand your love and exhaustion.  What a wonderful daughter you are your father is so fortunate to have your love and care.  God bless you.

Today my Mom has been with us for one year. She has COPD and is under hospice care. For the first five months Mom did fairly well. She took a few medications and breathing treatments but since Christmas we have had one crisis after another. The worse was in January when she did not respond to the morphine and albuterol. She simply could not breathe. When the nurse arrived it still took about 45 minutes until she was able to breathe "normal." My husband said it was like watching someone drown behind a glass and not able to help them. Today Mom can no longer walk. She can still get on the bedside commode but immediately has to have a breathing treatment when returning to bed. Lasik has helped to keep her blood pressure under control but we have one infection after another. It seems to move between her kidneys and lungs. COPD shows no mercy and is incredibly hard to watch. If I knew what I knew now I would still make the same decision to keep Mom here with us but it has been alot more complicated then I ever thought possible. Mom is 73 years old and this disease has certainly took its toll not just on her but us as well. Somehow I would like to use this experience in a way to positively affect others. From what I understand 80 percent of all people who smoke will get COPD. There has to be a way of getting the message out that no one wants to suffer the way my Mom has nor any family endure what we have experienced this past year. My heart goes out to every family that is caring for their love one in this capacity. May God richly bless you!  

Janrowt and my experience are very similar.  Hospice is great, but I found that I had to initiate a lot of the requests too, such as a suction machine.  We never used it , but I wanted one on hand.  Usually towards the end they begin to have increased congestion, and you will hear a rattle when they breath. I found this very disturbing.  The one thing that seemed to help were Atropine drops.  They did not make it go away but they did seem to help some, particularly in the first two weeks of hospice care.  We also experienced increased confusion.  At first dad would not recognize me but then would realize what he did and become upset about not knowing it was me.  Then during the last week, he would have periods of disorientation and also his emotions were unpredictable (might be himself, then cry, might be angry, etc).   Again, hospice is great, but I too found the support to be minimal. Don't be  concerned about calling them, let them know what is going on, ask questions, request medications, etc.  One other thing, with my Dad getting out of bed became very difficult. It would take two of us to lift him, morphine and increased O2.  So we had a urinary catheter inserted so he didn't have to get up so much. 

It has been a little over a week since I lost my dad and its rough.  My brothers and I first cared for my mother (home dialysis) then my dad.  So for 15 years our primary focus was being caregivers. Now I am feeling very lost.  I guess time will help, but its difficult.

I'm fortunate that my Dad is in the moderate stages of COPD.  He was diagnosed last week while in the hospital after a seizure.  My Mom is his primary caregiver while I try to support both of them from out of town.  I call each day to check in and I try to work in traveling to see them into my schedule outside of emergencies.  My Dad is receiving in-home physical therapy to help with physical weakness he has due to osteporosis.

I would like to extend my condolences to those on this board who recently lost loved ones who battled COPD.

I would like to thank everyone for their response. As of today Mom is in the hospice nursing home. She had a really bad time with her meds, confusion, and just down right nasty acting. Totally not her. She promised she would not do that again. I am sure it was not her fault.  She only remembers some of it. I went to visit her and she was sitting in the hall way like some other "older" people were. I just don't like her being there. So she will be coming home in a couple of days.It is very hard taking care of her and I do get tried. I am going to enlist other family members to help. My Mom can't sleep at night very good and that seems to be when everything goes wrong. I would also like to extend condolences to those who have lost loved ones.

joanelai,

I'm so very sorry for your loss. Time does help to learn to live with the loss but I so agree it is so very difficult to get to that place of TIME!  My Dad passed away May 18 & I miss him so very much! Everyday I think of him or talk to him. I still have not completely taken care of his room ( we had to convert our living room into his room) I just can't do it so I will wait til I am ready.   I am the executor for my Dad's will so that in itself forces me to do some things even though I don;t want to. I have been thinking about going to a grief counseling group, not sure yet but the Hospice company sent me some information maybe  it could help.  I do know we not only are greiving because they are no longer with us but as caregivers we have to go through an additional process of no longer taking care of them. Do you feel lost in that respect too? I do.  My life without my Dad here in my home to care for is a BIG VOID!     My heart goes out to & your family and other families in this same situation.

It was comforting to read your reply and know there is someone out there who understands.  I lost my mom 10 years ago and grieved very deeply.  But at that time my dad's health was already declining so I went right from being my mom's caregiver to being my dad's caregiver. Right now I am grieving the loss of my dad, of not being able to hold his hand or hear his silly sense of humor, but I'm also trying to deal with the realization that I no longer have a parent. So even though I took care of them and even though my mom was in her 70's and my dad in his 80's, I feel like I have lost my anchors.  My mom once said to me that no one ever loves you like your parents; now I know what she meant.  No one is going to worry about me or protect me as strongly as they did.  You are so correct about feeling the void of not being a caregiver.  My daily routine for 10 years centered around their care, the hours I worked, the location of where I live, even the food I cooked was what they liked.  So now, I am feeling very anxious about who I am now...who I want to be or should be.

Hello Everyone,

This is my first visit to this site.  I had a friend who had lived with COPD for about 10 years when I first met her.  She passed away a year ago after enduring this illness for about 17 years, w/ end stage COPD and cancer.  She was 86.  She maintained pretty well for her years and her disease and I attribute that to her positive 'never give up or give in' attitude.

I'm writing now because my husband, who underwent a quadruple bypass in January, was diagnosed w/ COPD at the same time.  He was a smoker of 2-3 packs a day for going on 40 years.  As of the date of his heart attack, Dec 30, 2008 he has not touched a cigarette - which is bitter sweet since it is sort of too little too late.

I'm scared because although my friend lived with COPD for an incredible length of time, I didn't know her when she was first diagnosed so I don't know her physical condition. That being said, my question is, how fast does the disease progress.  I know I am probably going to get the answer that everyone is different but, are there obvious milestones that mark the progression from one stage to another?  My husband thinks he'll eventually be able to give up his inhalers and I havent' had the heart to tell him any different as I don't want him to get depressed and give up.  We've just found each other and were married last May.  I'm almost 50 and he's almost 60.  When we found out the news my heart just sank.  Little by little I feed him information to help him understand how to deal with this and what to expect but I don't know if I'm doing him any favors by shielding him like this.  I just don't know what to do.  I'm scared and I don't feel like I'm handling this very well at all.  Any suggestions???  Any and all input would be appreciated.  I'm floundering.

Hi Cindra.My mom had COPD,lung cancer,breast cancer,and heart bypass a couple of years ago.I just lost her a few weeks back.My mom wanted to die at home,so I brought her home.I'm happy that I could give her a last wish.But I need to tell you-DON'T rely on Hospice to be there for her.They care very much about their patients...unless it's the weekend or holiday.That is when my mother needed to die and "they" were nowhere to be found,even after numerous calls for help.Make sure that you know how to change the bedsheets to keep her clean and comfortable.If she wears dentures and is not eating any more,Take them out! My mom wore upper dentures and toward the end,her denture had fallen.She had an oxygen mask on and her jaws locked so I was unable to remove the fallen denture which I believe obstructed her airflow from the mask.My greatest fear was that I was afraid she would suffocate and I believe she did just that.I called and called and called long before that and Hospice was nowhere to be found.So my mom had a very hard death even after all that she had endured before.I don't know why her plate had to be so full.The only thing I can say is to be with your mom all the time.Talk to her.Put her favorite channel or music on.Sit where she can see you and know that you are there.I'm there with you.God bless and take care of you both.

Hi Jannie. I know how scared you are.You are right to NOT tell your husband how long he will have to use inhalers.It is very important that he does use them as often as prescribed.He must also do excercises that will help expand his lung capacity.Make him eat broccoli.If he truly works at it,he can arrest it's progression for many many years.You cannot cure him and he has to be the one to attack it.He needs a doctor who is a pulmonary specialist-not a general practitioner!!God bless and take care of you both.

I do not agree with the idea of lying to your loved one about how long they will need to use the inhalers... when it comes time for using a nebulizer, then oxygen what will you say then? my mother lost the battle with COPD on April 15, at 903 am. I blame myself because we had a huge argument the evening before.... DO NOT GO THRU THIS KIND OF GUILT FOR THE REST OF YOUR LIFE. Be honest with him... remember, "FOR BETTER, OR WORSE, IN SICKNESS AND HEALTH"... you said those words... you believed them then... now live up to your end of the bargain... he will be angry at first, but will get over it in time...

I PROMISE

GOOD LUCK, AND BEST WISHES

My husband passed away two years ago with COPD. He had it for 10 years and suffered so much and I was his caretaker seeing him everyday seeing him fight each breath he needed. There are so many stages that you go through over the years. Being on oxygen everyday and seeing those levels go up are the hardest. Not being able to do the things you always did. My husband was a fighter in his illness he would still try to do the normal things, but as each day we could see that he was getting weaker. Having with me everyday was a blessing, because he always was worried about me. What if something happened to him who would take care of him, thank God I was there for him to the end. It is not easy dealing with COPD but I had a lot of help with hospice they were wonderful in every way. My husband was on hsopice for six months, but he made it for 9 months. The last week of his life was very special, his 82 birthday was on April 18 hospice brought him a Phillies Phanatic cake and gifts from the Phillies he was a great Phillies fan. Something happened that weekend he kept taking about his sister and his first wife were coming to get him. Hospice said let him know that you are ready to let him go. I said yes they will be coming to get you soon. The night before he died he kepp telling me to check the front door. He was very weak but all of sudden he needed to get out of bed. It was all I good do to get him in bed. he was fighting with me whick was not at all like him. The Nurse from hospice called and I told her what was going on and she came right away. She said he would pass away aroung 11:00 A.M. all his family and friends were with him. My grandchildren said good bye and my daughter. His family left about 1:00 O'Clock and said they would be back. Right after that I sat down with the hospice nurses to eat something and they came out and got me and said it was time. He died and was finally at rest. He looked so peaceful he was finally with God. I will always remeber the time I spend with him and how much I loved him. I still miss him a lot. I hope this helps you get through taking care of your Mom. God Bless you and your family.

My thoughts and prayers go out to all of you. I was sole caregiver to my father as well prior to his death in June. We also had Hospice. I am sure Hospice is different from county to county and state to state but the key is finding a good doctor. There are usually doctors that will come to your home and if you can find a good one, you will be blessed beyond measure. We were fortunate to have such a doctor for my dad and when Hospice was called in I had her remain in charge and not them! They could tell me what to do but I never made a medication change without running it by her first and she usually varied what they did, always to my dads benefit. While it is a hard and challenging time, having a doctor that knows your patient's history and does not look at Hospice as a cookie cutter is the best gift you can give yourself and your loved one! She is who I called when my dad died ~ not Hospice. We began the journey alone and that is how I wanted it to end. No regrets! Good luck to all of you.

my heart goes out to you and your family. May your father find peace.

I'm sorry.I did not say that you should lie to a loved one.What I said was"do not tell them how long they have to use an inhaler or medication.I stand by what I said.First of all,there is always hope,miracles and medical strides being made every day.So,we don't really know how long they might have to use an inhaler.The idea is not to (further) depress or scare your loved one.When you "graduate" from one method to another,you tell them you're trying something DIFFERENT that might work BETTER or FASTER. Always strive to be optimistic and supportive.Leave the realism to the doctor.The doctor should be trained in delivery of "the facts".I tried to help my mom believe that she was strong and that tomorrow was going to be a better day.We always reached for the stars and we convinced ourselves there was a cure right around the corner.Some day,some one will keep their loved one hanging on just long enough to be saved.Be positive and strong and there is a greater chance for survival.The common cold used to be a death sentance.KEEP FIGHTING and looking toward life.

I feel your pain!!! My husband has copd also and is starting to suffer quite a lot. he also takes breathin treatments every 4 hous but seem like he is breathing heaver and harder every day. He can still walk but is getting weaker, falls quite frequently, and has memory problems. He needs constant care so we are in process of moving in with our son and his family, where I can get some relief from constant care giver. He is soon to be 77 and I am 70 with diabetis and heart problems of my own ,so this seems to be the only solution we could come up with at the moment.

Hi i just lost my father on august 30, 2009 to COPD. He was only 53 years old.I took care of him, he lived with me. He struggled for four long years to try to breathe. In April of 2008 he had a heart attack because his heart worked so hard to get oxygen to the organs that where starving. Every sense he just continued to get worse. He had tewenty nine different medications that he was on not including sprivia or the zopnex and plumcort breathing treatments. He couldn't walk, he starting aspirating so they had to put a a feeding tube in him because he couldn't eat or drink by mouth. I had to learn how to crush all of his meds if they didn't come in to liquid form and put them through his G-tube. I would also have to suction him by taking a tube that goes in his nose to his lungs and it pulled out the secreations that he couldn't cough up. He would get confused with day and nite. He also became a C02 retainer. When he couldn't breathe i couldn't turn his oxygen up very much because the C02 wouldn't escape from his lungs and that would cause him to not be able to breathe as well. He would think that he was some where other than where he really was. They had to install a pace maker and defribulator in him. He got anixety really bad and was not able to sleep at nite. He had to start wearing diapers. He got so week you could hardly hear his voice when he tried to talk and he spent over 80% of his last year in a half in the hospital. He really suffered, their was not one day that went by even when he was in the hospital that i didn't go see him three times a day and spend at least 2 hrs at a time with him. I love my daddy more than anything and my heart goes out to anyone that loses someone they love to COPD. My daddy was my best friend. My heart is just tore into because he is no longer here with me and i just do not know how to cope with it. I know that he suffered so much but it does not ease my pain. i know that sounds selfish but its the truth. i have not been able to go back to work or sleep at nite because all i do is cry. I had to be the strong one while he was here and stand by his side to show him he wasn't having to go through this alone. Now i am lost. I fixing to start to go to grief counseling classes at hospice. I dedicated this to my loving father "It broke my heart to lose you, but you didn't go alone,for part of me went with you, the day god called you home!"