Hello there!  Welcome to Caring's groups.  I'm really glad you found us and posted!

While my mom doesn't have COPD (and I question if that is truly accurate) she does have heart disease and arthritis.  She doesn't sound as advanced as your mom, but I have a feeling we're headed down the same road.  And no worries about complaining.  This is a place where you can vent.  Caregiving can be tough, no doubt about it.  I'm sure everyone here is really confident you love your mom and that you willfully do all you do for her.  It's okay to be frustrated, stressed and even annoyed.  It comes with the territory, I believe.

I'm sorry I don't have any great info about COPD, but again, I'm glad you've joined us.  I'm really hopeful someone else will have some great advice and experiences to share with you!

Keep us updated on how things are going for you! 

Hi Robb4265! I'm so glad you've found us here.

I can't speak directly to your situation, but it does sound stressful, and this is the place to vent and look for shoulders to lean on.

I did locate a few news items here at Caring.com about the disease, although I don't know how helpful they are to you:

http://www.caring.com/items/search?query=chronic+obstructive+pulmonary+disease

Best to you, and please let us know how things are going.

~Laura

hi robb 4265...My Mom also has COPD and I am her caregiver, as you are to your Mom.  My Mom was diagnosed with COPD in her late 50's and she is now 73 yrs old.  She also suffers from pneummonia, bronchitis easily. If your Mom is like mine, she doesn't get colds, she gets pneumonnia or bronchitis. 

I understand what you mean by not complaining, as I share your feelings of your desire for escape, just leave even for awhile because the stress gets to be overwhelming.  This is normal for any caregiver, especially a child caring for a parent.  We've always seen our parents as strong individuals. They take care of us, and to see them needing caregiving from us, well...its difficult. 

I can only use my Mom as a model or a "pattern" for you.  As my Mom needed me to take over the household duties, including finances, housework, shopping, driving, going into appts at the Dr's office...etc... My Mom is also going through bouts of anxiety and depression because she realizes she no longer can do the activities she has done all of her life, things she enjoys like cooking etc... My Mom was also very independent and now she is depending on me for running the household.  She gets very anxious when she thinks I am leaving her. She needs reassurance that I will be with her, to care for her if she needs me.  Could your Mom possibly need an anti-depressant/anti-anxiety medication? That's something you may want to discuss with her doctor. And possibly for you as well.  Also, there is no shame in calling her doctor and making an appt for yourself and the Dr so you can fully understand what is to be expected when someone has COPD.  Some days its difficult enough just to breathe let alone try to walk, which is extremely important. My Mom's Dr suggested going to the grocery store and making the rounds of the perimeter of the store or walk as much as possible, it will  help the depression as well as increase your Mom's lung capacity.  You may think this is silly, but I bought my mom some bubbles, and had her blow bubbles as a way to exercise her lungs, its a way to create a fun memory while enjoying a playful moment, or have her sing along with her favorite record/cd that helps also.  

When I go into the Dr's offices, I take along a notebook so I can take notes from the dr as well as write down questions that "come up" between appointments.  By all  means, don't be afraid to ask questions or tell the Dr you don't understand, please explain further. You are your Mom's best advocate for her healthcare.  Another thought struck me, she could be afraid of you leaving her, because she feels alone in the world without you, she knows you're the only one who can care for her the way she needs.  Consider it an honor that she has great anxieties over you leaving her, you are her security and she trusts you implicitly.

I hope I have been some help...

Sonni

Sonni,

I spend soooo much time in the dr offices with her I feel like the paitient most of the time. We are both on anti depressents and anti anxitity meds ( for different reasons but still). We walk as much as possible around thrift stores and such when she feels like it. The heat is so unbearable for her as it is for me. We want to go fishing so bad but the weather keeps us from doing so. I can't even have time off when my husband comes home and I feel so selfish for even wanting that precious time alone with him. She feel that he doesn't love her because he wants me to himself on his rare trips home.

I know exactly what you mean there is no such thing as a simple cold. It's always asthma or pnemonia. Nothing is ever easy or simple anymore. Her independance is going down and so is mine. I don't have my children at home anymore, but, i don't get to see them etheir. She demands all my time. I don't even get my weekends alone anymore to do what I want. God, I sound Like a 3 year old complaing that I don't get to go outside and play.

I've had to put all my friends on the back burnner along with my kids and grandkids. If I go out with anyone, she says I don't love her anymore or don't want to take care of her. She reminds me of my grandmother and the way she use to treat my mom. I'd love to know how to break that habit without hurting her.

Thanks for listening to my complaints and for your help and understanding.

 Robb,

You're not complaining, you're desperate for answers to a difficult situation you see no way out of.  You deserve a life too.  Adults do go out and play...its called vacation or fun! I myself vaguely remember what that is...but both of us need to "cut loose."

You're intuition is dead on.  Your Mom isn't going to change so you are deciding to break the "cycle of demanding."  I'm offering you the advice my doctor offered me. 

Start using "I Statements."  Instead of her demanding, counter her with "I cannot do that right now, but in such and such time I can."  Its important to start with "I" because it deflects her demands.  Never do something you don't feel up to doing, because it takes away from who you are and saps your energy.  Here's the tough one...stay consistent.  You cant be wishy-washy because she will then know how to strike the nerve that works in her favor.

Here's what I started doing... I would say, "I am going to vacuum or dust. It's gonna take me about an hour, how about after that, I take a break and we can have coffee/tea etc..."  Unbeknownst to my Mom I would break for 10 mins then get up to do another task. I did this by saying, "Im not getting my chores accomplished by sitting here and enjoying your company so much! How about we meet again in another hour or so when I'm done.?" This worked well because she had my attention at the same time I could get done what I needed to do.  If she would make a demand, I would tell her why I can't be with her just yet..."I'm not finished with the bills...or Im concentrating and getting the task done so I can be with you (this one worked wonderfully well).

Is it possible for you to ask your kids for help with "Grandma"?  Perhaps you can tell them how important it would be to you for them to be with her, to make a memory of being with her.  She sounds like she is lonely and could use some company.  I don't know how young your grandkids are, but could she read them a story, color with them, paint by number with them or do some cut and paste?  Perhaps it would help you if your kids understood the situation, and that you just need some time to yourself.  Start small, perhaps taking a hot bath and/or a nap. Or retreat to your room so you could do something you enjoy yet you're right there if something happens. Have your kids watch Grandma while you and your husband go out to dinner etc.. if thats possible.  We had a situation in our family where grandkids couldnt nor wouldnt help with an elder in the family.  When the elder died, they said, "youre right, I shoulda spent time with.....while I had the chance. I wish I knew who they were, and what part of me came from them.  Anyway, I digress...

You can also find out if there is a senior day care center near you.  Perhaps your Mom would enjoy being with people her own age.  She may react like a little kid on her first day of kindergarten, kicking up a fuss but in the end she may enjoy it too especially if she finds a friend.  Where I am, we also have a community center that caters to seniors.  They have bingo games, dances, luncheons etc...  I don't know if your mom can be left alone, but if so, let her know that you need to go to the store (for example) and give her your cell number (if you have one) or a neighbors phone number.  Or perhaps, a neighbor you trust can stay with her for a bit while you do the shopping, albeit its mundane but its a start.  Your Mom sounds insecure she may need you to show her you're there for her, but you need and deserve a life too. You don't have to cut off your life to meet her demands. 

Everything starts in small baby steps...but she will adapt.  At first she will "buck you" she won't like it because you are taking away her power of demanding (which is what works for her to get her own way) and returning your power to you, which is where it belongs.

You are not selfish for wanting time alone with your husband.  Thats what husbands and wives do...they spend time together and have fun! Especially when your time together is so rare...  its just as important to have time alone to find peace, whether it means you meditate, do yoga, stretching and meditating works for me, as does gardening.  Everyone finds peace in their own way... Find your peace.. For me, it meant outwitting my mom by getting up before her, or going to bed after her...whatever works for you.

I wish you much luck...Let me know what happens...

Sonni 

Hi robb,

You've already gotten so much good advice, but I thought I'd chime in. My mom also has COPD, although it's not yet very severe. I can see her heading down the same road your mom is traveling, though.

Maybe we should add a section on COPD to the site, what do you think? After all, it's a  leading cause of death in this country.

Meanwhile, I've found some good information on COPD here:

http://www.nlm.nih.gov/medlineplus/copdchronicobstructivepulmonarydisease.html

and

http://nihseniorhealth.gov/copd/toc.html

And if you have any specific questions about COPD, please post them on the site. We have an expert in pulmonology who can help.

Last but not least, I want to echo Sonni's words: you're not selfish for wanting to live your own life. And she gave you so much fantastic advice on how to carve out that time for yourself, your husband, and your kids...it's so important to take care of YOU.

Hugs to you.

Hi Robb,

Your post really hit home for me. My mother does suffer from COPD along with Bi-Polar disorder and a recent broken hip that doesn't seem to be healing very well. Although we do have a personal companion with her during the days, I have taken on many of her responsibilities (grocery, banking, car maintenance, etc....)  Her COPD has advanced to the stage where she is on constant oxygen as well.  It's really difficult to see her aging before my eyes. She has always been a vital, strong, active woman and since the hip break, she's lost her spark.  I have a young child, a marriage, and millions of other things going on.  It's hard to juggle it all and not get a bit resentful of the "extra" stuff that comes along with an aging parent (especially one who is injured or sick) Then there's the guilt that emerges when you think about what life will be like without them. It's hard.

I may be able to give you some advice about your mom's depression.  With the bi-polar issue, my mom has dealt with a LOT of depression.   One thing that she swears helps is a daylight lamp. She's had one for years, uses it daily, and has even bought them for her friends.  You can find them a lot of places, and they may be a bit expensive (for a lamp) but from what she says it's well worth the investment. 

I have found a bunch of useful items at a online store called Enablemart.  Here's a link to one of the daylight lamps so you can see what I am "talking" about. http://www.enablemart.com/Catalog/Lighting/Daylight-Ultimate-Table-Top-Lamp [enablemart.com]

Good luck in your situation, and since I can't really say that it's going to improve - at least take comfort that you are not alone.  This is a great site and you'll get so much valuable advice. 

Take care

PLEASE add a section on COPD!  I am new to this board, and have several  health issues to deal with (both parents are aging and I am primary care giver) but the main concern right now is COPD with my Dad.  He was fine (as fine as COPD patient can be I suppose) until December.   Since then,except for the occasional trip to the Dr office or to get up eat, he is completely bedridden.  My mom a totally different set of health problems and I find myself taking care of two households now.  I haven't had a chance to read much on here, but I am glad to see I am not the only one who feels guilty, tired,  confused, etc.

I would like to include some websites that have some great information for COPD. These are websites that I use, and find them helpful. I can see there is a need for people to have a better understanding of their loved ones needs.

American Lung Association~ www.lungusa.org [lungusa.org]

National Institute of Health~ www.nlm.nih.gov/medlineplus/ [nih.gov]

www.copd-international.com [copd-international.com] This website offers information and support for patients, caregivers , families. There are chatrooms, message boards, and email lists and more..

www.nationaljewish.org/diseaseinfo [nationaljewish.org]  This website offers help for patients who have depression and anxieties caused by COPD.

www.mayoclinic.com [mayoclinic.com]  This website is full of information of many various diseases and explains diseases and conditions in simple laymans terms.

www.cdc.gov [cdc.gov] This website offers a good overview of COPD.

www.clevelandclinic.org [clevelandclinic.org]  This website is good  for understanding patients exercise levels, Controlled Coughing, as well as understanding COPD and Conserving  Your Energy.

I wish you all the best for you and your loved ones. I pray this little list helps you.

God Bless,

Sonni

Sonni,

I went to the web sitewww.clevelandclinic.org (clevelandclinic.org) Controlled Coughing. My mom suffers uncontrolled coughing to the point of loosing consiousiouness. I have found your advice most helpful.

I got sick about two weeks ago I didn't go to the dr until I started to run a temp. Turned out I am suffering from a viral bactirial infection that is highly contagious. I called my supervisor and ask her to send someone else over for a few days until I kicked this illness. Mom told her that I was faking and just didn't want to go over and clean her house or take her to the dr because she stays on antibiotics. (she has no amune system left)  I tried to explain to her that the antibiotics would only work for the bactiria infection not the virus.

I'm so close to getting her another housekeeper and me just take her to the dr, grocery and such like that. What do you think? My sis in Law and my husband think that's what I should do. But I'm just so afraid of her reaction.

 Thank you for all your help and advice.

God Bless,

robb

Hi Robb,

First of all, let me say I am truly honored that you're asking my opinion. That means a lot to me.

I am saddened to learn of your virus. I am not a doctor but did you know stress makes you more vulnerable to illness? Yes! It tears up your immune system something fierce.  I learned this from one of my Mom's Doctors. This is why she cannot be stressed.

To answer your question~~ You have the blessing of your husband to bring in help, so as soon as you finish reading this...GO FOR IT GIRL!!!  Thats exactly what you need...HELP!!!  You need a support system in place, and if it means getting housekeepers or whatever it takes, you need to do that for yourself and for the rest of your family.  They need you too.

All I can offer you is what I would do....Tell your mother that its doctors orders not to subject your mother to a new virus.  She is used to germs in her home but her immune system cannot fight against a new contagious virus. Even though she takes antibiotics on a regular basis, they are not a miracle drug that can fight off every intruding illness she is exposed to, as you know.

As I am reading your letters, I get the feeling that your mother is doing to you what my mother did to me, at first.  My Mom bullied me.  It was horrible.  A lot like what you're going through. The "Any Excuse Will Do" speech. I hated that too.

Her demands were going to be met or else!  If I didn't comply or do as I was told, I would receive verbal abuse.  Until...I told her straight up..."Mom, I am the only caregiver you have in this world so if I were you, I would be nice to me or  I am walking out on you here and now!  I am serious.  I am great at what I do for you. I am a loving and caring daughter that does not deserve this s--t you're giving me. I will leave you if you don't knock it the h--l off." Then I left the room. In fact, I went for a walk outside to walk off the anger and hurt.  She could see I was serious but I was giving her time to think about what I said and that I meant every word of it. I said nothing that wasn't true.  She called me back into the house and apologized.  Since then, I use "I Statements" that I told you about and I put power and firmness in my voice so she knows, I do what I say I am going to do and when. I don't leave any statement with a question at the end of it because then its up to her to answer it, placing the power in her hands again.

Something that may help you, is to play out your mom's reactions in your mind... Think about what she would say to you and rehearse your answers.   Play it out in all different kinds of ways in order to prepare yourself for whatever she is going to say in any given situation. This has helped me a lot too.  This way, you can plan on what she will say and then you will be able to answer her in the way you want to, again leaving you with control over your life and a feeling of well-being as you get your needs met. I hated having the 'snappy comeback" after the fact.  As Ive said in the past, she will try to override you, but hang in there...It may take time but its so worth it.  Don't give up on yourself Robb!

God Be With You.

Sonni

Sonni,

It sounds like our moms could be two peas in a pod. Yes, I am afraid of her reaction because she is the queen of guilt. I had three brother two of which have passed away. the third can't seem to get his life together enough to help himself muchless anyone else. He can't be trusted with himself much less our mom. He is currently waiting for his parole to come through. Petty junk. But still he is so irresponsible.

I do plan to talk to my supervisor and give my notice. I know all H__ll will hit the fan and I wont hear the end of it probably for the rest of my life. But, I just can't handle the stress anymore.

I still want to take her shopping, dr. and such but tring to get her to understand that is going to be very difficult. Any advice? should I speak to my boss first or her?

Thanks Sonni, you have made me feel like I have a true and very understanding friend in all this. I do look forward to your notes, so please keep them comeing. I find them so informative and helpful in so many ways.

Thank you so much and God Bless you in all you do

Robb

Dear everone who has wrote in on the subject - Does anyon have a parent with COPD

I thank you all for your anvice and the website that you have worked so hard to find. They are very helpful and informative. The only problem that I'm haveing is getting my mother to try anything new! So if any of you can tell me how you got your parent to try some of these methods I would greatly appreceiate it.

My mom believe that if her Dr. Berdine doesn't tell her to do it then it's silly or a waste of time. Even when her nurse tells her that it is good for her. The woman is so extremly stubborn it drives me crazy at times.

Thanks to all and May God Bless you all and your families.

Robb

Hello all -

Good grief it sounds like we are all living in a parallel universe here.  There are so many similarities among us! The issue of "Doctor knows best...." is a constant battle with my Mom.  But alas, her doctor that rules her world is a psychologist and in my opinion a QUACK! He flirts with her which thrills her and gives her basicaly any medicine (aka Valium) that she asks for.  I have tried to talk with him about her but that whole "patient confidentiality" thing is rock fim with psychology.  He wouldn't even speak to me about ANYTHING!  I truly can't stand him but Mom refuses to see anyone else.  Why would she when she's getting exactly what she wants...not what she may need.

Trying new things is a struggle for us too.  Mom refuses to realize that there are so many things,  options, devices, etc... that make her life (and mine) easier.  She's currently in a manual wheelchair because of the hip fracture.  There's something wrong though because after approx. 3 months she is in horrible pain.  We go tomorrow for new x-rays.  I just know that a screw has worked itself loose or a fracture has happened again. Then ...more surgery.  Of course, my husband finally has some time off over the 4th, and we were hoping to get to our lakehouse (which hasn't even been opened up yet)....I fear that's not going to happen.  Anyway, I tried to get Mom to get one of those scooters.....but NO! "That's for old people"....Hello! 

Sorry to vent but glad there's a place for it. 

Hang in there everyone!

Sam

Hi Robb,

I too feel like I found a friend that understands the MOM issue... In your situation, who to talk to first... thats a tough one.  First, pray about it until  you know whats right in your heart.  If you have time constraints, then I would get out 2 sheets of paper.  Write your bosses name on the top of one draw a line down the center, then do the same thing for the second sheet of paper but headline it with MOM. Then on one half write Pro the other half write con on each paper.  this way you will truly know what is best.  One side will shine through for you and you will have your answer.

As always youre in my thoughts and prayers...

Sonni

Dear Samantha,

You have to have a medical power of attorney to speak to her doctors. It's really not all that difficult to get one, especially since your mom already see's a shrink. You may need the assistance of an attorney but in the long run it's in her best interest and yours.

Fortunantly my mom agrees easily to let me see her doctors mainly because I'm just as or more stubborn than she is. My problem is STRESS and TIME OFF. I am her sole care taker. as you probably already figured out from the blogs.

Dear Sonni,

I think that you are right i should continue to pray it through and make those list. My husband is home this week and she is doing the moeppy thing but hey what am I suppose to do?

I'm gonna spend at least a day or two with him. He hasn't been home but about 10 days in the last year!

Thanks, Robb

Hi Robb and Samantha,

First of all, Robb...Let your Mom mope, have a temper tantrum or whatever she decided to do...Stick to your guns and let Mom know you have another life as a wife and that means you have a responsibility to your husband.  I know you can do it , G/F...

Samantha, whomever is your Mom's primary caregiver that is the person who should be made power of attorney.  But that does not mean Dr's will be willing to talk to you.  Sometimes you need to be forceful and make known your Mom's needs.

For instance, one of my Mom's Dr's flat out told me that she doesn't need to talk to me, I am not her patient.  "Whoa, Excuse ME? I am her daughter, primary caregiver AND Power of Attorney. I know you have my mother's best interests at heart as do I but yes you do need to talk to me, because she cannot remember what symptoms she has nor can she remember her medication schedule. So please spare me from having to contact Patient Advocacy, and tell me what it is I need to do in order to give your patient and my mother the best of care."  All of a sudden, the doctor decided to talk to me.  Go figure. tee hee...

Without being my mothers power of attorney, I am rendered powerless. Nobody has to talk to you about your Mom's care, from the medical insurance to Medicare to her doctor(s). The doctors are not legally bound to tell you anything.

God  Be With You Both,

Sonni

please please get a second opinion on the COPD

sheila,

thank you for your advice, but, we have had second, third and even fourth opinions on my moms COPD. While I am sure you have reason to advise me to get this done, I am also sure that you have read our conversations on this subject and discovered that we have been dealing with this desease for more than a dozen years.

I do appreciate your valueable advice though.

I am new to this post, and find the messages very helpful. My mom is in advanced stage of COPD, and I can indentify with many of the problems mentioned. I would also appreciate a specific COPD site.

Thanks,

Ellen T

Dear Ellen T:

I serched for many weeks for a specific site for COPD. I was unable to find anything. So I ask the question here.

This is our site. We come together to share, vent, help one another through the most difficult areas of our lot in life.

My mom is in the "End Advanced Stages of her COPD. While her DR. has her as stable as it gets, she is haveing more bad days. She fell a week ago last friday. She tore her elbo up pretty good. (Her skin is very thin. From meds) Her elbo is not healing in fact it got very infected. Her dr had to cut the infection out and if it doesn't start to heal soon we're going to have to try something else.

COPD is an unpredictable disease. I say this because last year her exrays showed improvement. Now I'm told she is in the end stages of the disease.

Every minor surgery is cause to worry, every cough, every move......All we can do is watch and wait. Try to make her as comfortable as possible.

We are still making plans to go the coast for a week or so then to Wyoming later this summer. Mom loves to travel. So I take her as often as I can.

The only life that I have now is hers. I scrape out a few hours for myself at the end of the day. I make sure she is settled in then I retreat to my own home. It's not going to be long before we are forced to sell our small single wide and buy a house on the ground that will accomedate her needs. She is going to have to move in with us/me before it's all said and done. I refuse to place her in a facility.

It's alot of work and worry but I don't think I can have it any other way.

Best wishes

Robb

Hi Robb,

I'm sorry to hear your Mom is in the end stages of COPD. I've been offline for quite some time dealing with my own health issues. I've been thinking about you, and your family, and praying for you all.

I applaud you for making the tough decision about caring for your Mom yourself. It's a mighty courageous thing to do, caring for your parent at the end stage of life. I pray for your strength and courage at this time.  Will you be able to have hospice care for her? Or is that not an option?

The Dr has increased my Mom's med doses and while she is trying to make progress, she knocks herself down by trying to do too much (cooking, trying to walk for excersize, that kind of thing).  She is a renegade who wants to do what she wants, til she dang near falls flat on her face cause she feels great in the moment.  All told, she is doing fine. I wish your Mom were doing as well. Is your Mom healing from her fall and the infection?

I wish you and your family well and God Bless.

Hello:

 I am a parent with COPD.  I have two sons, 23 and 29.  I have had COPD for about 9 years,  I am 59 years old.  I recently had a short stay (3 days at the hospital) first time I had been hospitalized in almost 6 years.  When I was in the hospital 6 years ago it was touch and go for the first 2 and 1/2 months.  I was in a medically induced coma. 

I am on oxygen 24 hours a day.  I have arthitis in my back, hips and knees.  I am on a lot of medication.  I am so sorry that you don't understand that we with COPD do not want to have to depend on anyone.  I am still fairly independent, I do laundry, dust, vacuum, cook, go get pedicures, but there are some days when I just don't  feel very well, knowing that I can't go to the mall or grocery shopping without taking my oxygen or alone.  I

I understand how frustrating it is to have someone depend on you for everything,  Please, understand that I love being with my family, but I also need my space as much as they need theirs.

Good luck to you all and hope everyone is doing well.