Not ready to lose my mom to COPD...

Hi Kim,

Ah, honey. ((((HUGS)))) It's been a tough road!

It is my own personal sincere belief that while our loved ones may leave their bodies, they never leave our hearts or our minds. We see them everywhere, all the time, and they see us. They've only changed form and now are flying. :)

Here's some information on how COPD progresses. http://www.caring.com/questions/stages-of-copd Perhaps it will help you be prepared as things change. Here is also a post about how you're feeling and how to help yourself deal with it: http://www.caring.com/blogs/caring-currents/caregivers-fear-of-the-inevitable

Please feel free to post and let us know how you are doing and we're here for you!

Hi Kim, Wow we have alot in common, my mother will be 70 the 24th of this month, I am the youngest of 3 and I am 42, my mother had a heart attack when I was 18 and when I was 22 had a quadruple bypass, over the years she has acquired copd and empysema along with heart disease, her heart disease is now only treatable with medication. My Dad passed away in 2003 from a stroke, so my mother was living a a senior building alone up until last december when, everything suddenly took a change, her empysema got worse, she is on 4 liters of oxygen, constantly. Has like your mother lost and extreme amount of weight. She is now down to 108 pounds. She is on breathing medications 4 to be exact on top of pain medication and anixiety meds. That is probably her worst thing is panic (anxiety) attacks, not being able to breath scares them. My mom was like your mom always a rock, and now the roll has reversed. In december she was in and out of the hospital, I lost my job because of it. Then the doctor told me I should think about hospice and I just had a break down thinking omg she only has a little time left, and then he explained to me that hospice can actually help them live longer, it keeps them out of the hospital (where lets face it anyone can catch anything there) and when she does get a respitory infection the nurse catches it and gets her on meds as quickly as possible, unlike having to drag her to the doctor and then she catches something else in the office. The nurse we have is great, she also has a massage therapist which help with her breathing by losing tense muscles so they can breath better. My mom is on probably a total of 20 different medications. I have always been the closet one to my mother she moved in with us after she got out of the hospital, I have gone through all the process of being her paid caregiver, and I am enjoying what time I have left with her, I don't know how I will handle losing her and she has always been with me I have never gone a day without talking to her. My brother lives in another state but my sister lives in the same neighborhood and rarely comes to see my mom or even help, that is what frustrates me, not having help from my sister, don't get me wrong, I have a husband who helps and 2 amazing teenage boys who also help but sometime the responsibility takes its toll on me. I see her declining everyday and the dementia is lack of oxygen to her brain your mom probably needs to be on constantly, although it has caused my mother depression because you are tied down to it, it does keep her mind clearer. The also gave my mom a vpap machine which helps her at night. i would say your dad needs help taking care of her, it is alot to handle on your own. If youi have any other questions or just want to talk to someone in the same boat feel free to email me. Lynda

It is difficult when the roles are reversed and you suddenly see your parent as fragile. It's th circle of life [not to be tr9ite] but that's the way it is. Obsessing over losing someone when you don't know how long she has left saps your strength and energy. If you are on antidepressants, I assume you have a therapist or at least could get a referral to one. It helps so much to talk to a professional who is objective, but totally in your corner to help you and has no agenda of their own. It will help you grieve and get things in perspective, not to mention how to conserve energy for when you really need it

Your story brought tears to my eyes.. Your pain is felt by so many. I am on the other hand of the tears.. as I am the one who is living with COPD. I cry when I am alone, because of the sadness that I will one day bring to my Husband, Children and sister. I am only 59 and have had COPD for 9yrs now.. it has gotten much worse in the last couple of years, I am sure due to the flu and pneumonia that got me down at that time.. And I cry because I dont want to go.. not yet.. not now.. There is so much out there I have not seen or done.. I am afraid.. You say your mother is on 20 different medicines, and I am sure that is plenty.. is she also on an antidepressant to calm her and not make her so sad? You are there for your dad, and that is so wonderful. Without you he would be lost. My prayers are for you, to be able to cope and go on. Your mother will forever be with you, and I know that doesnt always mean much when you dont have her THERE.. next to you.. sitting at the Thanksgiving table.. but.. you must remember all the good, and all the love that she showed you.. and let her know that she did a great job.. tell her over and over how much you love her, and tell her to rest if she needs to.. share the moments you have with her now, at the show or a road trip.. so she has no fear of shortness of breath.. She is very lucky to have a daughter so loving.. God Bless...

First of all, HUGS to you for your enormous strength. I completely understand your feelings of "helplessness" to your fears of losing Mom. I too share what you are going through and beleive me its hard. I have had to be prescribed anxiety medications due to my own panic attacks over my mother. and my blood pressure skyrocketed since I have been taking care of her. My mother is 69 this year and she has severe COPD and is on 24hr oxygen. She unfortunatley is a smoker as well. She has had 2 heart attacks the last 2 Octobers(brought on by "panic attacks" because she couldn't get her breath) She is Type II diabetic. She has spinal stenosis and 2 hips that need replaced. I worry about her constantly. I moved her this last July from her home across state to come and live with myself and my husband because her quality of life was not being met by her caregivers in her home. I knew it was going to be hard but I guess I underestimated that part. But,since she has been with me for the last 4 months she has improved on all fronts dramatically. Her breathing is so much better now even though COPD is not reversable it is still way better. She cut down from 2 packs a day to 1/2 pack. Going out of the house (doctor visits,etc. )is the most taxing on my nerves. She cannot be away for too long becouse she uses nebulizer every 4 hours. When she moved over she was on 40mg of Prednisone for her lung passageway which in turn made her diabetic. So trying to maintain her sugar levels was a rollercoaster all day every day. However, with gradual tapering off, she is no longer on the Prednisone and her blood sugar levels have regulated to normal. THank God!! Her last visit with here Heart doctor gave her the OK and her follow up is not for 6months now. It has taken alot to get her where she is at now and it has worn me thin. I work full time and then come home to care for her is exhausting. I change her O2 tanks every day, bathe every 2-3 days, make her meals for the day every morning, and lots more. She is pretty self sufficient for herself but just needs help with some things. I haven't had time to research online where to get in home help but I need it because I still worry all the time. SHe has Medicare and Blue Cross/Blue Shield so I know I can get help just dont know where. I would really like a Nurse or someone to come over a couple hours a day just to check on her while I am away at work. So anyways, I feel your pain and understand your fears and it will get better in time.
Julie

Hi , my Name is Marysol I am the younger daughter my mother neve live with me she always live with my older sister in Venezuela and then she decide to come to rhe United State when my mother was 93 years old now she is 97 with alzhaimer and since she came to live with me i take care of her with the help of my husband we are alone in this painful task i feel lately with no energy a feeling of sadnes I really do not know how to handle this see my mom like other person is so painful and so stresful I am afraid all of the time for her and for me because emotionally I am completly destroy and I fear for my physical health and not strong emotionally as my sister is but she do not want to help I am just asking for your prayers to God to give my husband and I the peace and strenght to keep going Thanks to every one who read this Marysol

Marysol and Anon,

Probably the best place to start is your mom's primary care physician

[PCP] They should be able to refer you to a social worker or a home health care agency. Or try your local social services agency or agency on aging. God love you for what you do everyday!

You are all so wonderful and because of all of you I feel less alone in my fears and pain.

Thank you debilou for allowing me to see how my mother may feel being the one with COPD. It makes me realize that maybe I need to stop focusing on my pain and fears and help her work through her own.

My mom had a heart attack 2 weeks ago on Oct. 19th which was brought on by extreme stress caused by a family tragedy. This is the first heart attack she has had since her first one in 2002. She is now on more heart pills and we have bottles of Nitro everywhere. She has required nitro everyday for chest pain or arm discommfort. There is no surgery options due to her lungs so she is home and Nitro is all we have to stop another attack.

To help mom, I purchased a transport wheelchair and a walker with a seat and she FINALLY accepted using these tools. I explained to her that now she has more FREEDOM than she has had in the past 9 years. I told her now we can go anywhere and everywhere. She no longer has to walk and be so out of breath that she can't have a quality life. My husband and I took the wheelchair and walker to her house yesterday and she was actually EXCITED about them. I did not tell her I was getting them.

My husband and I told my parents that we want them to live with us when they are READY to live with us.

I think I am finally accepting the way this is going and I just want to spend as much time as I can with her and make her happy.

I need all of you and this site. It really helps me. I hope that I can help all of you as well.

Thank you

What state do you live in Kim?

I hope all is going well with Kim & her mom. We haven't heard from her in awile

Sending hugs and prayers to all of you. My parents were heavy smokers before Alzheimers set in. They both had and Mom still has other medical problems. I lost my Dad a year ago. Being "Daddy's little girl" it was very painful for me to lose him. Dad was hospitalized with a physical problem and discharged after treatment, coming home on oxygen. I told Mom that because of that, smoking would be dangerous. She said, " We'll just have to quit." They were smoking a carton every two days! I cleared out all evidence of smoking. The dementia was beneficial. Dad asked for a cig on his arrival home. I told him he had quit and handed him a sucker. I should have bought stock in DumDum Lollipops!!! he never smoked again. Mom asked for one and I reminded her of Dad's condition and that she had quit. Her loving response was "Bull S--t!!!" She walked to the phone to call my brother to bring her some. Fortunately, she had forgotten how to use the phone. She came back and sat down and never asked again. Dementia was a blessing in disguise, at least for that. Caring for those whose minds are gone is painful to say the least.Mom is full bed-care now.By God's grace and with His strength I take one day at a time caring for her. 24/7 care is harder than anything I've ever known. This site has connected me with people like all of you. We share pain, frustration, sadness, anxiety and grief. I gather strength from all of you.I pray God gives you all the strength, rest, peace and support you need. Thank you for being here for me! You are not alone!!

Hi Kim,

I understand, but it is with my dad and mom, and now I have become very sick because of it. I took care of my dad with lung cancer and copd. He had copd for years, but was in denial. He loved golfing and could not walk the course for 7 years. His 4th wife divorced him at age 72, and she was 55, and all the life went out of him. He went into depression, but after living with me for 1-2 years, went to live in an apartment. He continued to smoke a lot , and visit my mom (the second wife who he never stopped loving). He got lung cancer in January 2006. I am single, and had some health issues. But fortunately for him, I was able to care for him. I should have been a paid caregiver, as it was too much for me, and I worked as an NP. But my job was easy, but then it left the state. I took on too much, and after my dad died my mom had a stroke 9 mos later. I took care of her, with caregivers as she wanted to stay in her apartment. My sisters wanted her in board n care. She is now doing well, but it took a huge toll on me. My sisters did not help, and then my dog was dying of cancer and my sisters did some things that really affected my health. I need to get my life back, as I developed anxiety and depression along with the health issues. I was used to working, and I do not have a good doctor, there is no trust there. My dad was my rock, but I realize that after that it was my dog and being validated. My dog died of cancer. She was my soulmate. I understand. I am still trying to recover as I have chronic health issues, and my career was lost. I pray to God for strength, and He will restore me. You hang in there. If you are spiritual, I realize your mom is your rock, as was my dad, and my dog, but God or your Higher power needs to be, so if your health goes, or any of the ups and downs in life happen, you will stay solid. Rayne

I wanted to say thank you to everyone for your thoughts and prayers. Mom passed away yesterday at 8:30AM after a series of heart attacks during those 24 hours prior to us losing her. I had the amazing gift to be with her throughout the night holding her hand each time her heart tried to take her from me. Up until th...e last few hours before the last two attacks she and I were able to talk and she patted me on the cheek and told me how happy she was that I was her child. These were precious moments for us even though we didn't know that she only had a matter of hours left to live. Towards morning she began to drift away into a coma with Dad and I holding her hands. She passed away peacefully with my Dad, sister, myself, all of her grand children and spouses surrounding her. Mom was never going to be ready to leave her family and she lived her life for us completely. She was a kind and loving woman who would give her own life for those she loved. She spent a very long 10 years with life changing COPD which later lead to her heart problems. She was my rock and I will miss her more than words can say. She will forever be with me, watching over me and helping me cope with the worst days of my life.

Today was very hard on me. I just wanted to let go and be with her.

I need help getting through this.

Dear sweet Kim, You are an Angel sent to this site, as I am in your shoes right now, with my Mom. My heart aches and the tears blur my feeble attempts to type. You are blessed to have had the beautiful, though painful time with your Mom during her final hours. My Mom is in end-stage Alzheimer's. She hasn't known me for over 3 years. She was the family rock. Like you, I would never leave my parents, no matter how heavy or difficult the job of caring for them these last several years. Like Rayne said before this, I pray you have faith in God. He is there to take your hand and help you through this painful time. I watch my Mom on a baby monitor when I am not at her side. She is full bed care, 24/7. She is on morphine for pain and has stopped eating. I know she is slipping and I can't make her better. I am blessed by God to have cared for her, as she cared for the family in our younger days. Though I do this alone, most of the time, I know I'm not alone. I'm just the one God has prepared for this. You have my deepest respect and admiration for giving the care you have. Thank you for being here for me! Just sharing yourself and opening your heart to the healing hands of other Angels sent your way, will I hope, give you strength and comfort to know you don't walk by yourself through this often Lonesome Valley of Life. May God bless and keep you safe and strong. Sending love, prayers and big hugs your way. Deb

Dear Kim,

You could not have done more for your mom. I hope that you can realize that and it will comfort you in times of sadness. The hurt may never go away, but it should temper over time. I dislike cliches, but I believe that death is a transition to a better place where she doesn't have to take meds, she can breathe easily and can watch over you. Jean

I am having such a hard time getting through this and there have been times where I just don't think I'm going to make it. Sometimes I think would do almost anything to take away the pain.

I could never have kids of my own so all my attention was given to my parents. I feel like my purpose died when my mom did. My dad is going to live with my sister because she has a large room with its own bath and even a sitting area for him. Originally he was going to live with me and my husband. Although I know he will be more comfortable at my sister's house which by the way is only 7 houses down from my own house it feels like yet another "purpose" is gone.

If I'm not my parent's "caregiver" anymore... who am I? What do I do next? Where do I go from here? I am so lost. Even though I have my husband and my family and friends I feel utterly and completely alone in this world. I feel like there is nothing left.

I think I'm in trouble. I think that I need help.

Hello Kim, I'm sorry I couldn't respond sooner. I, too, am losing my Mom. Not unlike you , I wonder where do I go from here? Have you spoken with your therapist? Do you have a minister you can call? There is nothing more difficult to deal with, after a loss, than the emptiness and lonliness, no matter how many people surround you. I'd give anything to be able to reach through this machine and be with you. I feel helpless. I can only pray that God will send someone to help. Everyone means well with kind words. Your parents raised a wonderful daughter! God has given you the strength to do what you have done, no doubt. You had a purpose. Now , you must take what you have learned and use it to find a new purpose in your life. God is my greatest source. My faith is strong, though I am weak, weary, discouraged and empty at times. I know He is there for me and will get me through it ALL. I am sure I can speak for many of us here. You are not alone, we are here to listen and help where we can. You have the support of others who share lives similar to yours. People here have helped me much more than my own family. You, Kim, have helped me, more than you can imagine. In time, I believe you will find another purpose to focus your energies on. Don't give up or give in to despair. Try to focus on your blessings. You had a time with your Mom that no one else did! You are still here. You woke up because you have life in you. Your life is precious and don't forget it! I pray some other Angel, like you, will reach out to help you see your worth and help you carry on. Please dearest Kim, keep in touch. I am grateful to know you and have learned much from you. May God bless and keep you in the shelter of His loving arms and guide your footsteps hour by hour and day by day, as He has done for me. My Mother always said, "This, too, shall pass." I will lose her shortly, but I will remember her gift of strength, love and support to go forth, no matter what!!!! Big Hugs and Prayers, Deb

I am in shock every single day to discover how e-x-h-a-u-s-t-e-d I am. Even after nine or ten hours of sleep.

It is driving me crazy! I'm taking extra vitamins, trying to eat nutritional meals, probiotics -- everything that would make a normal person bounce back.

Because of my health, I'm even too tired to read everyone's posts though I want to so much.

But I send love and friendship to all.

Just lost mom to COPD October 9th, 2009. Details that led up our in my story is on another discussion heading related to end stage COPD. It is so difficult to carry on (also no children)but what keeps me going is my mom who smiled all through her illness. She had the most positive outlook as she followed all doctor instructions. She never complained about it. (well, just a couple times!). She still tried to do everything no matter how tired she got. She wore her portable oxy all day, used her bi pap all night. Now that she is gone. I cry almost every day on my way to work. I cry over the slightest things that remind me of her, including going grocery shopping, which she enjoyed weekly. Even though it is months later, I miss her so. I just know that my tears for her are also with a smile for her. She would be very upset if she were to know that I remained saddened for too long a time and did not continue on (I am working on it still). When I visited her in the hospital it was my smile she commented on that cheered her up. As I cry writing this I smile for her. I have to also remember that she wants me to take care of dad. I can't do that if I let myself give up. Please continue to miss and be sad for your mom, but also, try to go back to your normal life FOR your mom. Your mom probably lived much of her life through you, now you can live through memories of her life.

Good morning , once again, to all. Mom no longer needs me as a caregiver. She is now smiling her beautiful smile with my Dad. They were once again together on Valentine's Day. Last Wednesday in the early morning hours, she left me behind. The demands of caregiving suddenly disappeared. I'm grateful she is no longer in pain and her mind is once again normal.I am relieved, yet empty. It's a new and strange life I now face. It's like leaving home, once again, to build a life of my own. By God's grace and with His strength, I kept my promise of "no nursing home". We will pay our final respects the day after tomorrow. I will be thinking of all of you then. You have shared your joys, pain, and sorrows with me. Thank you. I hope and pray that you will all find the strength, peace and rest necessary to continue in the loving care you now give. Know that you are not alone. Until we meet again, May God bless and keep you. Deb

Thank you everyone for being so supportive. I never thought I would make it one day let alone 11 days past my mother's passing away. It is for her and my family and yes I think even for myself that I keep going on. I noticed now I can think about her without tears, I even laugh again once in awhile. Nights are the worst for me because it was evenings that we were together most of the time. My Mom was like your Mom "MissYouMom", she always smiled and never stopped living until the day she died. She even WALKED into the hospital ER 3 days before we lost her instead of needing an ambulance. She lived her life the way she wanted to right to the end. She fought with all she had to stay with her family. How can I not do the same now in her name? I feel as though I am beginning to find a sense of peace. I bought a journal and began writing my feelings to her. Talking to her through writing just as I would have if she was sitting in the room with me. It felt good. This past weekend my dad and I spent both days going through their stuff. He is moving in with my sister next month so we had to get started. It seemed okay to do it this weekend. I found so many wonderful things she kept such as my baby pacifier, my baby rattle, school papers and crafts, report cards, a get well card where my aunt helped me sign when I was less than a year old. She kept things from all her kids, grand kids and great-grand kids. All these things were placed in a tote by Dad and I and will be given to the kids. The pain is still never too far away and I cry each day but I know that her arms are around me still and she is helping me every day. I love her so much and I want to wish her a Happy Valentines Day. So, I will. Right here. From all of us on this site to all of our Mothers and Fathers who are no longer with us, Happy Valentines. Thank you to everyone for the love and support you have given me. Each of you has made my grief a little easier to handle. I love you all!

I just came across this site and find it comforting realising what you are all going through. I am an only child and my parents adored me and lived just for me. My father died from emphysema 22 years ago. There were nebulizers but there is so much available nowadays and I feel so sad knowing he would have been so much more comfortable if they were available all those years ago. He used to tell me that he wished he had lung cancer as then he would have suffered just a short time while in his case he had suffered for years. It was heart breaking seeing him struggling for breath and I really feel for you. When he died he looked peaceful for the first time for so long. I still feel him near me and I still feel close to him. My mother has dementia and is in a rest home. It was impossible to keep her with us any longer. I go to see her practically every day and she still recognizes me. However, whenever she sees some one roughly with my appearance she thinks it's me. I spend my time with her saying the same things over and over . She says things like 'when I went shopping this morning ....'. She broke her hip a year ago and every day tells me 'I don't know why but today my leg is bothering me'. She lived for me and even now thinks only of me. When they get her her food she still can't accept that I'm not having a plate as well. When I give her some chocolates after a few minutes she tells me 'look I've bought you some chocolates' I know that when I leave she soon forgets that I've been. It upsets me when some one says 'So why do you bother ?' At least her character hasn't changed. There was a man at the home who used to smile at everyone. He used to take my hand and kiss it. Then when his children used to come he would glare at them and growl. It must have been heartbreaking for them. I once read that our role in life changes. From being cared for, we become the carers. The only thing that keeps me going is that she still knows me and often tells folk that I am her only daughter. What many people don't understand is that when a parent dies you get all that sympathy but when you lose a parent to dementia/alzhimers folk don't realise that you too have suffered a loss. Even when I plan something - a dinner party, a new kitchen etc - my mother would have been thrilled for me and done all she could to help me and nowadays I am all alone. To all of you who have managed to keep your loved one at home - I really admire you and it will be a huge consolation for you when they die. I wish I could have done the same but my husband would not even contemplate it.

KimL- Just read you reply and happy to hear your comments. Your reply in turn helps me back. Coping continues for some time for all of us and we help each other. Almost 5 months and I still have to tell myself it's ok to carry on. My drive home from work was listening to some "happy" music (for a change) and I was feeling pretty good and then... I remembered mom. How could I possibly be happy? then a tear came down, lost it for a moment and then thought "mom would want me to be happy". I must keep on convincing myself it is ok to be happy (even if for now it is only sometimes). I will get there. You will get there. We all will. Missyoumom. (so much) thanks Kim and everyone who felt the need to share their story and to help another cope.

Deb (By God's Grace) so sorry. Life will be very difficult for a while and it will take some time. Missyoumom (going on 5 mths and not much better but getting there slowly). Take care of yourself and family for her.