New to the site/my mom has copd posted by deb5715 @ 02:37 AM November 01, 2009

deb5715 — Sun, 01 Nov 2009 02:37:06 -0000

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.

New to the site/my mom has copd posted by SHERRIH @ 12:49 AM October 28, 2009

SHERRIH — Wed, 28 Oct 2009 00:49:39 -0000

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.

New to the site/my mom has copd posted by SHERRIH @ 12:49 AM October 28, 2009

SHERRIH — Wed, 28 Oct 2009 00:49:39 -0000

New to the site/my mom has copd posted by Jannie @ 02:06 PM October 14, 2009

Jannie — Wed, 14 Oct 2009 14:06:11 -0000

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.

New to the site/my mom has copd posted by Peacegirl @ 01:54 PM October 05, 2009

Peacegirl — Mon, 05 Oct 2009 13:54:32 -0000

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

New to the site/my mom has copd posted by emilia @ 04:52 PM October 03, 2009

emilia — Sat, 03 Oct 2009 16:52:43 -0000

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.

New to the site/my mom has copd posted by Mothers Daughter @ 06:04 PM October 01, 2009

Mothers Daughter — Thu, 01 Oct 2009 18:04:56 -0000

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 :(

New to the site/my mom has copd posted by vicslove @ 02:32 PM September 29, 2009

vicslove — Tue, 29 Sep 2009 14:32:21 -0000

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.

New to the site/my mom has copd posted by billy @ 12:43 PM September 21, 2009

billy — Mon, 21 Sep 2009 12:43:53 -0000

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.

New to the site/my mom has copd posted by LauraL @ 09:50 PM September 20, 2009

LauraL — Sun, 20 Sep 2009 21:50:33 -0000

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)))

New to the site/my mom has copd posted by billy @ 01:25 PM September 18, 2009

billy — Fri, 18 Sep 2009 13:25:41 -0000

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

New to the site/my mom has copd posted by kimberly819 @ 02:58 AM September 10, 2009

kimberly819 — Thu, 10 Sep 2009 02:58:56 -0000

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!"

New to the site/my mom has copd posted by kimberly819 @ 02:58 AM September 10, 2009

kimberly819 — Thu, 10 Sep 2009 02:58:56 -0000

New to the site/my mom has copd posted by emdusaf2 @ 03:38 PM August 23, 2009

emdusaf2 — Sun, 23 Aug 2009 15:38:59 -0000

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.

New to the site/my mom has copd posted by Linny @ 03:22 AM August 19, 2009

Linny — Wed, 19 Aug 2009 03:22:37 -0000

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.

New to the site/my mom has copd posted by tryingtosmile @ 09:52 PM August 17, 2009

tryingtosmile — Mon, 17 Aug 2009 21:52:49 -0000

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

New to the site/my mom has copd posted by Rose Medallion @ 12:52 PM August 17, 2009

Rose Medallion — Mon, 17 Aug 2009 12:52:04 -0000

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.

New to the site/my mom has copd posted by Peggy68 @ 06:27 PM August 16, 2009

Peggy68 — Sun, 16 Aug 2009 18:27:17 -0000

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.

New to the site/my mom has copd posted by sjwolfe @ 06:14 PM August 16, 2009

sjwolfe — Sun, 16 Aug 2009 18:14:20 -0000

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

New to the site/my mom has copd posted by Linny @ 07:52 PM August 13, 2009

Linny — Thu, 13 Aug 2009 19:52:21 -0000

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.

New to the site/my mom has copd posted by Linny @ 07:32 PM August 13, 2009

Linny — Thu, 13 Aug 2009 19:32:38 -0000

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.

New to the site/my mom has copd posted by Jannie @ 02:37 PM July 16, 2009

Jannie — Thu, 16 Jul 2009 14:37:10 -0000

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.

New to the site/my mom has copd posted by joanelai @ 01:07 AM July 04, 2009

joanelai — Sat, 04 Jul 2009 01:07:20 -0000

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.

New to the site/my mom has copd posted by janrowt @ 10:56 PM July 02, 2009

janrowt — Thu, 02 Jul 2009 22:56:11 -0000

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.

New to the site/my mom has copd posted by Cindra1 @ 08:07 PM July 02, 2009

Cindra1 — Thu, 02 Jul 2009 20:07:31 -0000

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.

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