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over 5 years ago
LauraL said...

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.

about 5 years ago
joanelai said...

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.

about 5 years ago
Lisa Lee said...

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.

about 5 years ago
joanelai said...

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. 

about 5 years ago
LauraL said...

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

about 5 years ago
Lisa Lee said...

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

about 5 years ago
janrowt said...

Cindra,

First let me say how sorry I am that you & your Mom are going through this.  It's been about 4 weeks since I went through this with my Dad. I am new to this site too but felt compelled to respond to you & share what happened with my Dad in hopes it will help you.  My Dad passed away from COPD. I was his caregiver. I had Hospice come to my home for him. I did not know what to expect or how end stage COPD would effect my Dad. I asked questions, etc... "how will the end be"? I was told his heart would probably give out first.  His heart did not give out first. My Dad was extremely scared of feeling like he was suffocating. So that was my number "one" concern with Hospice care. They told me the morphine (liquid drops) would help him breath better by relaxing the lung muscles, as well as relax my Dad. It worked. I gave my Dad morphine every 2hrs and his oxygen level came up (I had a O2 monitor, Oximeter) and he was not laboring to breath, however the morphine did wear off after about 1 1/2 hrs. My Dad was normally on 6 - 7 liters of oxygen but at the end he was on 9 liters. I took my Dad to the Dr. on a Friday & on Monday my Dad passed away. It was quick & my Dad did not suffer.

The Dr. we saw on Friday told us he needed to go to the hospital or have Hospice. My Dad did not want to go to the hospital so we came home. Sunday morning his oxygen level dropped to the 70's and I asked him to please let me call the ambulance, he agreed but at the hospital he was told he would need to be ventilated & my Dad said he wanted to go back home. We came home with Hospice care. It's different for everyone with this disease but here is what I experienced, I hope some part of it will help you. Hospice did not tell me what to expect. I had to go through trial & error unfortunately (but that's another story). My Dad was alert & talking to us (with some confusion). High levels of oxygen like what my Dad was on can cause confusion because of the carbon dioxide build-up & lack of oxygen to the brain can cause confusion as well. But it was not as bad as what he had experienced in the past. Anyway he ate & drank over the week-end, went to the bathroom. No complaints, he said he was not in any pain and the morphine helped him breathe. He was weak though & I could look at him & tell he did not feel good at all but my Dad was determined right up to end he would do for himself as best as he could even if it took him 30 minutes to go to the bathroom!  Around 6am Monday morning my Dad went to sleep & I could not wake him up. I continued with the morphine. Without it he was laboring to breathe. He could not swallow at this point so fluid would run out of his mouth (hospice did not tell me what to expect) nor did they supply a suction. I had to do this manually myself.  A nurse was not with us for this final stage to explain what was going on & walk us through it.  Although my Dad went quickly hospice should had responded better than what they did. After he was unconscious no one told me he should have pads under him. We did not have any pads until 10 minutes before my Dad passed away.  My Dad was unconscious at 6am & passed away at 12:45pm.

I would push for hospice to tell you what to expect even though everyone goes through it differently at least you will have some idea. Have a nurse with you at the very end (she can wait in another room until you need her if you want to be alone with your Mom)  to explain what is happening. Have morphine, suction, bed pads. The body does not want any food or fluids at the very end and that's ok don't feel bad your Mom is not taking in any. She will not have any desire for it.  Hospice should give you something for nausea just in case (morphine can cause nausea) as well as any meds she normally takes for her COPD.

I miss my dad so very much but at the same time I am glad he is not suffering, struggling to breathe, having bad headaches, his body swelling from water retention, kidney failure, heart problems and the emotional & physical struggles he went through all brought on by COPD.  He was blessed with a quick passing.

My heart goes out to you & your Mom. I know how heart breaking this is. Just spend time with your Mom & let her know you will be there with her every step of the way.

God be you & your Mom.

about 5 years ago
Texas Caregiver said...

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.

about 5 years ago
Engedi said...

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!  

about 5 years ago
joanelai said...

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.

 

 

about 5 years ago
JodiS said...

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.

about 5 years ago
Cindra1 said...

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.

about 5 years ago
janrowt said...

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.

about 5 years ago
joanelai said...

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.

about 5 years ago
Jannie said...

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.

about 5 years ago
Linny said...

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.

about 5 years ago
Linny said...

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.

about 5 years ago
sjwolfe said...

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

about 5 years ago
Peggy68 said...

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.

about 5 years ago
Rose Medallion said...

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.

about 5 years ago
tryingtosmile said...

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

about 5 years ago
Linny said...

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.

about 5 years ago
emdusaf2 said...

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.

about 5 years ago
kimberly819 said...

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!"

about 5 years ago
kimberly819 said...

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 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. 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 because all i do is cry.

about 5 years ago
billy said...

Iam new to this so you have to help me out,my wife had copd for 6yrs,she recently pasted away on 23rd july 2009,i miss her so much & feel so lonely now that she is gone.i was her carer for the whole time,i sit and cry most of the time thinking of her,im seeing a bereavment councilor on a weekly basis also getting antidepresants from my doctor to try to ease the pain im going through with my loss.can anyone tell me if it will get easier for me,we would have been married for 43yrs this december,miss her so much

almost 6 years ago
LauraL said...

Oh, Billy! Welcome. I am so sorry for your loss. While I can't say that the pain will ever go away, I do believe it will get easier as you get a little time. Love never dies, Billy. (((hugs)))

almost 5 years ago
billy said...

Many thanx for your advice,as my wife was cremated and i have her ashes at home as she had wished.I have ordered a new urn to commemorate her memory,i also donatated £500 to the ward and staff for all they done for her while she was in there care,it was the leased i could do to help others with copd.

almost 5 years ago
vicslove said...

I understand how each of you feel and are suffering,my husband passed away on May 11,2007(about 2 and a half years ago),and I still miss him terribly, I am doing better but after 48 years with the love of your life it does not heal easily. I went to greif counciling,(after a miserable 8 monthes), that helped a lot for me just knowing that other people are going through the same thing you are and you are not alone really helped me. My husand was on oxygen 24 hours a day for 11 years and he did not want me to mention Hospice, so I tok care of him myself, the last 2 years,when he really needed taking care of, we had no relatives near by and friends seem to fade away when someone is sick. The few friends and church friends who did last were afraid I would give out first, but I made it through. I was digosed with C.O.P.D. 3 years ago and I am on o2 at night and am close to being on it 24/7 just walking from room to room gets me short of breath, and I know first hand what is coming I just trust in God to take care of me. I think a lot of the good and bad years we had, mostly good, I am 70 now and my husband was 78 when he passed. He did not want anyone else to care for him but me,so I stayed every night every time he was in the hospital (the last 2 yeas he was in and out) I only came home to let the dogs out 2 times a day that really takes a toll on you, but I really loved him and so I was there for him. I don't wish this terrible desease on anyone, and I hope everyone quits smoking before its too late. May God Bless and comfort every one of you on this site. P.S. I had that whole poem put on the card at the service, I'm talking about the last line in the reply above. If anyone would like it I would be glad to give it to you.

almost 5 years ago

hello,

Im new to this. My Mother is 61 has had COPD since 2002 and over the past 2 weeks I have begun to worry that this is the beginning of the end or the end stage as Ive just read on this site. She is stuggling to breathe, not sleeping, not eating alot at all and relying on oxgygen more and more.

I am her only care giver and I'm 30 yrs old with no partner.My grandfather died of COPD around 6 years ago and all I remember was like he was choking. Im petrified to do this alone and cannot imagine all the things Im going to have to go through and watch and most of all scared of losing the other half of me.

Just don't know where to turn really as she is so proud and will only let me help if it gets really bad. Just distraught at whats coming and scared Im not strong enough :(

almost 5 years ago
emilia said...

In 2000 my dad passed away with copd. I gave up my apartment to be with him and mom who also was ill with depression at the time. It was a long battle for dad. He struggled all the time to get a breath of air. He was a happy person considering his condition. We miss him dearly but I am gratful that he is not suffering anymore. We have to remember the good times we had together. I always remember that everytime he had an appointment he wanted to go eat a fish sandwich at the nearest burger king. I remember how much he enjoyed eating that sandwich. He also cared for mom during her depression years which seemed like they were forever. I remember as a child mom being depressed. I know how you feel and only our faith can give us the strength we need when a love one passes. You are blessed for caring for him when he needed you.

almost 5 years ago
Peacegirl said...

Hi Emilia. I am new to this site/forum and want to comment on your post. I have been caring for my mother now for about 10 years. She is in a long-term care facility but the girls who work there are run off of their feet. So 4 days a week I go there and stay with my mother until I take her to supper at 5:00. She was diagnosed with COPD over 10 years ago now. Unbelievable! She is 92 years old. How many times she has been deathly sick and pulled through I cannot tell you. But this illnes, COPD, is difficult on them first of all and for sure on us. Sometimes I think I am going out of my mind! About 8 years ago already i was asking her doctor 'how long this was going to last' and he didn't know. Oh my God little did I know (and her doctor too) that she'd still be here today. She is old and that frail little body fighting for air all the time. Her tummy heaving hup and down. And the coughing fits. The coughing fits are terrifying. When these coughing fits started, I used to get all upset and think she was going to choke to death right then and there. But now...after all these years, I just sit there and offer water if she wants and just wait for her to finish. I have gone through so much worrying that I am pretty tired. Once I get home from my mother's, I close the door behind me and just don't want to see anyone for the evening. Just be on my own and have quiet time. Socializing is still important to me. I go to my mother's 4 days a week and the other days I end up having lunch or dinner out. It is important that you get out. Keep in touch with friends and enjoy yourself. It is really nice to be able to carry on conversations with people as I cannot do that anymore with my mother. She will start a sentence and never finish it anymore. It just trails off without an end. She can't get up on her legs anymore. Takes everything out of her to get her from her chair to the commode. After which she is so stressed and it takes about 10-15 minutes for her to regulate her breathing. She cannot do anything by herself anymore. She has to be helped to dress. Also when I am not there she has to be put on the commode by one of the workers. She cannot make it to the washroom anymore. Getting her into her wheelchair is stressing for her too. I could go on and on and on....but what I want to say is....you can do it. You are strong and have to keep on going. Try, try not to worry. And enjoy yourself if you can. I think that's very important to OUR wellbeing. Good luck. Karina

almost 5 years ago
Jannie said...

The common threads I see in these emails are the sense of dread about the disease getting worse and the anxiety over not being able to do more or cope better. Probably crazy but the fact that other people have these exact same feelings make me feel a little better to know that I'm not alone in having these feelings. Another thing we all seem to have in common is wanting to know what to expect when and the fact that no one seems to be able to tell us 'what' or 'when'. I've found that the uncertainty is the most unsettling experience. That's where we just have to have faith and continue to do the best we can.

I still haven't told my husband that he will probably never be able to do without the inhalers simply because I don't know what else to tell him and I don't want him to get depressed. Since his quadruple bypass on Jan 2, 09 and being diagnosed w/ COPD that same week, he has also had surgery for an abdominal aneursym and has yet another surgery upcoming for a colon polyp. His cardiologist has been great with getting involved to make sure he has what he needs for his heart when it comes to the surgeries but I worry that he needs a respiratory specialist rather than just our family physician going forward.

Do any of you have a respiratory specialist and if so, at what stage did you get one involved. I feel like he needs someone who will know his condition from a base point that can track his progress. I'm afraid that I don't know enough to get him the help he may need when his status changes or that we may wait longer than we should. Can anyone recommend a respiratory specialist in the Raleigh NC area?

Thank you all for sharing. Best of luck to everyone and god bless.

almost 5 years ago
SHERRIH said...

YES, I AM CARING FOR MY FATHER WHO HAS COPD AS WELL AND IS IN THEE END STAGE. WHAT EVER THAT MEANS. I'M SURE THAT HE'S BEEN HERE AWHILE NOW BUT HAS BEEN WORSE OVER THE LAST 6 MONTHS. I CAN'T GET A CLEAR PICTURE FROM THE DOCTORS ON WHAT TIME HE HAS LEFT. IF YOU HAD TOLD ME A YEAR AGO HE WOULD STILL BE HERE NOW I WOULD HAVE LOST THE BET. HE IS ONE TOUGH COOKIE. HE'S NOT WALKING, VERY WEAK, CONFUSED, AND DOESN'T HAVE MUCH QUALITY OF LIFE. HE HAS CARETAKERS STAYING WITH HIM 24/7 AND IT'S COSTING A MINT. HE'S RUNNING OUT OF MONEY AND I'M CONSUMED WITH WORRY ON WHAT TO DO WITH HIM. IT'S SO SAD TO SEE HIM AT THIS POINT. I WORK FULL TIME AND HAVE A FAMILY SO THIS IS VERY HARD ON EVERYONE. WE HAVE BEEN GOING THROUGH THIS WITH HIM FOR NINE YEARS AND WENT THROUGH THE SAME THING WITH MY MOTHER FOR YEARS BEFORE HE BECAME ILL. I UNDERSTAND EXACTLY WHAT YOU ARE GOING THROUGH. IT'S EMOTIONALLY AND PHYSICALLY EXHASTING. THE ONE THING THAT GETS ME THROUGH EACH DAY IS KNOW THAT GOD WILL TAKE CARE OF EVERYTHING AND HE NEVER PUTS MORE ON US THAN WE CAN HANDLE. GOOD LUCK TO YOU AND YOUR MOM.

almost 5 years ago
SHERRIH said...

YES, I AM CARING FOR MY FATHER WHO HAS COPD AS WELL AND IS IN THEE END STAGE. WHAT EVER THAT MEANS. I'M SURE THAT HE'S BEEN HERE AWHILE NOW BUT HAS BEEN WORSE OVER THE LAST 6 MONTHS. I CAN'T GET A CLEAR PICTURE FROM THE DOCTORS ON WHAT TIME HE HAS LEFT. IF YOU HAD TOLD ME A YEAR AGO HE WOULD STILL BE HERE NOW I WOULD HAVE LOST THE BET. HE IS ONE TOUGH COOKIE. HE'S NOT WALKING, VERY WEAK, CONFUSED, AND DOESN'T HAVE MUCH QUALITY OF LIFE. HE HAS CARETAKERS STAYING WITH HIM 24/7 AND IT'S COSTING A MINT. HE'S RUNNING OUT OF MONEY AND I'M CONSUMED WITH WORRY ON WHAT TO DO WITH HIM. IT'S SO SAD TO SEE HIM AT THIS POINT. I WORK FULL TIME AND HAVE A FAMILY SO THIS IS VERY HARD ON EVERYONE. WE HAVE BEEN GOING THROUGH THIS WITH HIM FOR NINE YEARS AND WENT THROUGH THE SAME THING WITH MY MOTHER FOR YEARS BEFORE HE BECAME ILL. I UNDERSTAND EXACTLY WHAT YOU ARE GOING THROUGH. IT'S EMOTIONALLY AND PHYSICALLY EXHASTING. THE ONE THING THAT GETS ME THROUGH EACH DAY IS KNOW THAT GOD WILL TAKE CARE OF EVERYTHING AND HE NEVER PUTS MORE ON US THAN WE CAN HANDLE. GOOD LUCK TO YOU AND YOUR MOM.

almost 5 years ago
deb5715 said...

Thank you so much for sharing your experience with your dad. I am just beginning my journey with my dad's final state COPD and am having problems finding information on what to expect. God bless you and May your Father rest in peace.

almost 5 years ago
ColleenM said...

Hi. May God bless all of us and help us to cope with our sick loved ones. I just got onto this and didnt notice anyone mentioning bipap machines. Maybe thats because its taken for granted, I dont know. Mom is in the hospital again due to her COPD. She had congestive heart failure, infections, and still has phnemonia. Today is day 12. They told us this might be it, but it appears she is improving. Mom is 77 and a fighter. Sometimes I wish she wouldnt fight so hard, but I know she is worried about Dad and doesnt want to leave him alone. He had a stroke and they have always had a beautiful, loving marriage. Mom is on bipap at 70% overnight and for a couple of hours in the afternoon. Otherwise, she is on a rebreather mask until she needs more oxygen. She is very weak, still catherized, but able to use the commode with our help. Then she is wiped out and needs to sleep. My siblings and I have been with her mostly round-the -clock in the hospital and are proud to serve her. This may sound like a selfish question, but it isnt meant to be. I want my Mom alive any way we can have her for as long as possible. But, can a patient be on bipap too long? Doesnt it just artificially prolong the inevitable? Mom is well enough to make her own decisions, but I am her health proxy for the future. We will do what ever Mom wants, always, of course. But how do you know when enough is enough? She is the best friend I`ll ever have and I love her with all of my heart. Each day together is a precious gift. I would do anything for her and am so afraid of life without her.

almost 5 years ago
Lenorasdaughter said...

Hi Colleen just wanted to share with you to talk to your mother as much as possible. Be honest, asking her what she would like to do. Give her the dignity she deserves by letting her have final choices. She is also hanging in there for you, your father & others. The doctors do not know everything- sometimes the will to live is very strong esp. if your mom has a good marriage & supportive family.
You are not selfish at all! I sense that you want 2 do what is best/right for your mother & family. LOVE her while she is here because life without a mother is very hard. (I know this because my mom passed away in May 2009.) Just be positive around her, and do what she wants as long as it is medically safe. Your heart will tell you when enough is enough. The correct decision--no doctor, nurse, or RT can make you do anything. Talk with family, friends & experts. Ask questions & discuss options. You are in my prayers & Best wishes. Be the strong person your mom raised you to be. You have our support!!

almost 5 years ago
ColleenM said...

Thank you, Leanorasdaughter. I think you know exactly how I feel and unfortunately, what lies ahead for me. I guess there really is no way to prepare ourselves. Like you said, simply spend as much time together while we can, because someday there will be no more time. I am sorry for the loss of your mom. The holidays must be terrible for you this year. I hope you can get through them quickly, less than a month to go. We did a lot of talking and my mother signed a DNR and No Intibation order yesterday. It was an emotional day but now that those big questions are settled, Mom can continue healing and enjoy the rest of her life. I totally agree with you, none of the "experts" knows what my mother is capable of and she may stick around longer than they expect. She told her doctor that she doesn`t think God wants her in Heaven, just yet! I think she actually feels better now that she has stated her wishes. Her breathing continues to improve and they are talking about taking out the catheter if she can eat and gain some strength. She will probably remain in the hospital for a couple more weeks, then go to a rehab facility, before hopefully, eventually coming home. I know we will all get through this difficult time. Everyone goes through something like this eventually, but it helps to unload a little here and share with new friends who have suffered the same pain. Thanks again. No one knows like someone who has been there. You have helped me. I will pray for you and your family to begin to heal.

almost 5 years ago
Lenorasdaughter said...

Dearest Colleen, just sending you a big hug! You are an advocate for your mom. Hope you encourage her to eat (even if small amount) once the tube is removed. Feel free to 'unload' here as much as u need to-for you are safe & among supportive friends. I wish only the best for you from the bottom of my heart. Keep up the positive & do not accept any negative talk. Your mother sounds like a trooper! And, that positive energy will bring her through many days & nights. Know that you are in my prayers & I will be checking for updates (ONLY if it is not an intrusion & you have time.) Be mindful not to neglect yourself either... sometimes as caregivers we forget about ourselves. Again, Best Wishes.

almost 5 years ago
Meow1941 said...

I Read Everyone's Story On Here and All Of Them hit Home, MY MOM Has Had COPD for About 6-7 Years and Continues To Smoke Heavly, I Gave Up Fighting With Her.. 1 Thing Is Differant, She Has The COPD and Is Schizophrenia and Thinks That People Are Instucting Us To Act A Certain Way Or Your Guilty Of Something, She Is IN Total Denial and Refuses To Admit 2 Either Illness, She Claimes There Doing It To Her, There Giving Her Heavy Breathing and Can't I See What There Doing TO Her, She Has A Doctor MD.. BUT She Refuses To Take Any Syicotic (spelled Wrong) MEDS, So I Am Living With That Along With Taking Care Of My Husband Who Is Recovering From A Stroke In may 22nd 2009, and Lot's of Things Wrong, He Has Aphaisa and Things Are Just So Rough My MOm Refuses To let Any Home Maker Or Nurse Or Anyone Into The Home, The Lady herd My MOM Saying, Well If She's Not Gonna Let me In I'm Not Gonna Waste My Time Where Other People Who Need Me, So I Am Totally NOT Prepaired, She Now Only Weighes 80lbs and Hardly Eat's Anything. I Feel My Hands Are Tied, I Guess it is Just A Waiting Period, I Wish The Best For Everyone and My hearts goe's Out To You All and I Think I Will Stay Close to this Site So I can be better Educated, Since I don't Know When She Is IN Her Last Stages, Which I Think She Is Already Since She Went from 130 to 80lbs, No Questions Asked or Explained Since Doctor Tells Her She Don't Listen To Him He Know's She's Gonna Die From Smoking, When She Goes I Will take It VERY HARD Since She's Always just About Live With Me and The Last 12 Years Straight, It's Gonna Be Devastating

almost 5 years ago
Lake Lady said...

My mom has COPD also. She was just released from the hospital yesterday after her 5th bout w/pnemounia this year. Now we are looking at possible lung cancer. And yes, she still smokes and with her oxygen on her face! It makes me want to "slap" her! Of course I would never do that. But we are so all so angry with her! She does not care who she puts in danger. It's because of her that I quit smoking 2 years ago. I smoked those nasty things for 35 years! She will getr about 2 weeks out w/quitting and feel really good and then start up again and a few weeks later back in the hospital. She is drving us all crazy! My heart goes out to you!I really do understand how you feel and what you are going thru! My prayers and thoughts are with you. May God give you strength & peace.

almost 5 years ago
ColleenM said...

Dear meow1941, You do whqt you can and then you let go and let God.Be the best daughter that you are physically capable of being...and that is ENOUGH. NONE of us is responsible for the choices that our parents, children, loved ones make, once they are adults. You can support someone without agreeing with them. I hope that you have faith because it will help you.Hang in there, you are not alone. It is not our job to judge someone that cannot beat addiction. We can only hope and pray for them. You are an amazing daughter.

almost 5 years ago
Peacegirl said...

Hello Sherrih Yes, the 'end stage'...I have heard those words a number of times myself...over the last few years even. After all this time, she is still in 'end stage'. I think COPD is 'end stage' from the time of diagnosis till the 'real' end. It has been a long, long journey and I am soooo tired. My dear mother is 92 and was diagnosed at least 15 years ago. Even then, when she was first diagnosed, she was sick and I was worried. Through all of these years of her illness her doctor keeps telling me that she is a miracle. She must have a helluva strong heart. It is sad to see her barely being able to breathe. She has been soooo extremely negative the last week or so now. No one is nice. No one is good. Everyone is out to get her. She is going to jump out of the window. No one knows how she feels. Why can't I be there more often. Etc. Etc. Etc. Very draining for me. But - we gotta keep strong. Try to get away for a weekend. Go for a msssage or a nice long pedicure. Go out for a nice dinner. You get the picture. I read all the posts here and I find it very, very helpful. I can't believe how many people are in the same situation as myself. We all have to be strong. Oh, and no one knows when we will be "taken". No one. Not even the doctors.

almost 5 years ago
Meow1941 said...

Colleen, Your Right, They Make There Own Choices, Now I Don't Know If Part Of Me Is In Denial Or Just Stressed, The Thing That Gets Me Is She Really Believes They ( The Voices ) R Doing It To Her and I Don't Believe She Is In Reality and That Makes Me Feel Like I Need 2 Be In Control Of The Situation, Because She Don't Believe Anything Is Wrong With Her I Feel I Have To Take A Step Back and hand It over To GOD,It's Out Of MY Hands and Yes I Am Angry With Her and I REALLY REALLY TRY HARD Not To Yell @ Her BUT IT's Hard Seeing This and Watching Her Breathing Deep and Her Body Breathing In and Out Basic-ly I'm SCARED To Lose Her, Thank You Very Much 4 The Support and The Encouragement, I Cope Day 2 Day. Thanks Again. Meow1941

almost 5 years ago
monap said...

Last year, I watched my father gasp himself to death in the hospital--the torturous end of his 28-years-long fight with COPD. This year, I am witnessing the slow demise of my mother-in-law from the same disease. It's heart-wrenching. My hugs and prayers go to everyone, patients and caregivers alike, who suffer from this disease.

over 4 years ago
angel daughter said...

my mum is very ill with copd and she has now taken to her bed and doesnt want to get up to do anything she has become very weak, we now have a matron visit her weekly but i am very scared as to how an when, i am told she could have months or weeks.

over 4 years ago
monap said...

Peacegirl, My heart goes out to you. I am hearing many of the same things from my mother-in-law: "No one knows how I feel." "I am going to commit suicide." "Where have you been?"

My mother-in-law is panicky because she cannot breathe, and she suffers from dementia (Alzheimer's), made worse from low oxygen saturation levels. COPD is a cruel disease for all concerned.

over 4 years ago
Meow1941 said...

Christmas Day I Spent My Hours From 12:30am-5am @ the Hospital For COPD My Mom Was In Total Denial. She Asked To Go To Hospital Because She Could'nt Breath, Then After being There She Got Aggravatted With Doctors and Wanted To Come Home Had A Attitude With Them Where I Had To Say LOOK MOM U Asked To Come Here and Now U Just Want To Leave and Not Be Treating C'On Now It's Christmas I Came Here Now PLEASE STOP, and Let Them Finish Grrr.

over 4 years ago
roundlady said...

GOD BLESS YOU! FOR CARING ENOUGH 4 YOUR MOM 2 TAKE CARE OF HER SO MANY WONT. I HAVE BEEN A CAREGIVER 4 45 YRS. FOR OTHERS AND MY FAMILY I KNOW WHAT IT TAKES MENTALLY . AND PHYISCALY

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