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New dont know what to do

Janettay profile image
20 Replies

Hi, my mum has COPD, Im a little lost really. At the moment she dosent want to ever wake up again. Feels like she is suffocating. Her chest feels like its going to explode. The strongest woman I know reduced to a breathless, weak and weepy wreck. She has recently been given a nebuliser, but it dosent seem to be helping, shes waiting to have an oxygen trial after a specialist nurse descovered a yesy she had in June showed she may need oxygen but no one followed it up at the time. She dosent want to make a fuss, but she is 76! I just dont know what to do to help. She had steroids a month ago, they seemed to help a little. They said she didnt have a chest infection, dont know how they figured that as they didnt do any tests. I know its a horrible condition but I never expected such a fast drop in her health. She has always been active, swimming and keep fit everyday, but now she struggles to get to the toilet. Any advice would be appreciated.

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Janettay
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20 Replies

Sorry to hear about your mum there isn't much you can do apart from being there for her and supporting her. Dose she have inhalers to take every day. I am not on oxygen for my COPD so I don't know much about oxygen. If she is taking her inhalers properly and eating well. She should have a good life.

Janettay profile image
Janettay in reply to

Thanks for your reply. She takes inhalers ever day, nebuliser x4 at the moment. She has been diagnosed for about 16 yrs, always into exercise. She eats organic, but recently lost a lot of weight as she lost her appitite. Shes been coughing a lot for about 6 mths. To the oint where she cant breath in or out. Its made her very depressed. There was no gradual decline, just bang, cant breath. Im trying to convince her to let me take her to hospital in morning just so we can have oxygen and get her levels checked. Feel so helpless.

in reply to Janettay

May be just seeing her GP to check her out I know my self I hate having to go to hospital hope you sort something out for her take care

in reply to Janettay

Hi janettay...if she can't breath like you say...why wait untill the morning. ...I would phone for an ambulance.

Sometimes parents need reminding that there children know what's best for them.

Your post was 3 hours ago so I hope you got it sorted by now.

Good luck.

Andy.

in reply to

Absolutely the best advice, and I hope you have done this for her. If it can get sorted soon as possible you will both feel able to cope better.

cybergran41 profile image
cybergran41

Hi Janettay. I can understand your concern, it is difficult to know what to do, but it sounds to me as if you should get her to the hospital straight away, whatever has made her go downhill so quickly certainly needs seeing to, if she refuses to let you take her, call an ambulance and at least the paramedics will see her and advise her what to do, she may take more notice of them than she does of you.

I was out on to oxygen about 4 months ago and it really does help, I am 74 so a similar age to your mother, please tell her from me to get it seen to and get oxygen if that is what is advised.

Take care and please give my love to your mother and tell her we are here for her if she needs us, we are always ready to help, advise and support if it is needed xx

knitter profile image
knitter

Hi I agree with Andy, if you haven't got emergency help yet, a visit to her GP as soon as possible is needed.

Maybe a longer dose of steroids is needed,

Does she take a preventer inhaler as well as the reliever nebiuliser.

I have to balance my preventer and reliever medication otherwise my breathing gets worse.

Don't worry about making a fuss....ask and get all the help that you need as soon as you can,

Has she had a CT scan at all to help find out what's going on.

Take care and please get medical help today.....if you live in the UK you can contact the BLF helpline for advice.

casper99 profile image
casper99

I'm no expert, but, I agree with sailors, get an ambulance.

If they didn't give her tests to check her out properly, she could have an infection.

A poster on here earlier has gone through something very similar to your Mum, being fobbed off by the doctors. Finally, after knowing herself, she was in big trouble, she ended up in A&E.

She has just been discharged from hospital after tests there finally found out she has had an infection for several weeks, right in the bottom of her lung.

There comes a time in every child's life when the roles reverse and they have to take charge of their parent's health. I know, I had to for my Dad because he became fearful of being a burden to the doctor.

I'm also sad to say that due to having a large extended family, I'm increasingly hearing that the medical profession seem to ignore elderly people once they get less able to stand up for themselves.

Keep us informed on your Mum, Jannetay, she shouldn't be having to suffer like this. xx

in reply to casper99

What a lovely caring letter.

Happy26 profile image
Happy26

The best help is a Lung Specialist....get her an appointment.

In the meantime you could organise for someone to vacuum and dust her home once a week.

She needs plenty of fruit and vegetables and fresh air and sunshine.

Exercise can be 10 minutes at a time throughout the day.

rubyred777 profile image
rubyred777

Welcome to the site Janettay

Sorry to hear your mom is having such a rough time. It's been 7 hrs. since you wrote your post. Hopefully by now, you've gotten her to the hospital and gotten some answers. Definitely sounds like an infection ,or she needs to be on oxygen. What stage copd is she? Tell her we're all thinking of her. (And you too)

Please let us know how she is doing.If she would like someone to chat with, she's more than welcome to join us.

Rubyxx 😊

Jeanielee1 profile image
Jeanielee1

Hi Janettay you have had lots of good advice from members on here but your Mum also sounds depressed, once you have her breathing sorted,she might need to talk to Doctor about antidepressants, good luck Hun x

Is she getting ventolin and steri neb for her niberliser as was only on ventolin in pump and nib but when I was in hospital last year they put me on both which now help me quit a lot plus I thing it was in November of this year the copd nurse took me of the handihaler and sere tide and put me on fostair at first was great as did do a lot more than i was doing but sinc we have had all this rain I have gone back down a bite when I was in hospital last time the doc said I was going to go home with oxygen that was last year but not got it so I thing it is a post code lotto who can get it and how can't so if she needs it fight for it for her and you got to make her do stuff for her self as well or she will just sit in a chair or in bed and thing her time is over as I did when I first fond out I have got copd as I lost two sisters to it it was my wife and my sons got me going as every attack I had if it was a bad one I use to say to my wife I wish I was dead but know I can control it so get her back in to the same roten she did have Good luck

onamission profile image
onamission

Hi Janettay I have COPD was diagnosed 11 years ago and my mom had COPD.

I found the hardest thing to come to terms with I couldn't do thing I used to do before I had COPD this is harder to come to terms with more than the condition and like your Mom I worked full time, looked after the house my daughter and found time to socialise with mates at the gym.

Today my COPD is worse than 11 years ago i go swimming still look after the house not as well as I did but what I'm trying to say there is life after being diagnosed with COPD even if it is in the slow lane.

I went on a PR course 2 years ago my only regret is I was not put on this course when I was diagnosed it helps you to control COPD I'm sure if I had done this course 11 years ago my COPD would of not been as advanced as it has.

Hi Janettay Hopefully you have got your mum sorted out by now keep in touch and let us know how you got on take care

scorpiolass profile image
scorpiolass

Hi Janet, I have only just read your post. I am similar to onamision. I am 72, been diagnosed with Copd about 12 years but before then I had Asthma for a long time. My mum also had copd and she was a never smoker. I have found that mostly, I am OK but infections that don't respond to antibiotics are hell. She may have Pneumonia, I did. I hope your mum has been seen now; I hope she has had an Xray, if not insist she does. let us know how she gets on. Love Margaret x

Louisiana profile image
Louisiana

If your mother really starts to fight for breath ring an ambulance. They can help her on the spot and she doesn't HAVE to go to hospital if she does not want to ....my Nurse has drilled this into me, as I am sooooo against going to hospital so I never would have rung for an ambulance. Hope things improve for you both. By the way, I "mega dose" with my Salbutamol when I am REALLY fighting for breath... I was taught how to do that and it really did help me at my worst time. Do speak to your nurse/doctor. I am a couple of years older than your mother.

I am 68 and have same condition and am still on oxygen. I am doing Rehab to build chest muscles and I know I will be OFF the oxygen soon. I've been through this, before.

I also invested in a portable oxygen machine the INOGEN One, to use when I leave the house. I had problems with the oxygen company and my doctor not getting forms in on time and the company threatening to take away my oxygen, so I said hell with that and took out a loan and bought a used one from Craigslist. Best investment ever made! No more worrying. If I need oxygen, I got it, no matter. I don't need a doctor to tell me if I need oxygen therapy by having the Oximeter and my own Oxygen on hand.

You need to get an Oximeter, that thing the nurse puts on your finger to measure the oxygen level in your blood. Ebay has battery ones for $12 shipped! Or, you can get more expensive that charges on your computer. Then you will know if oxygen is needed if it goes below 88 or 90. That is where mine usually is.

I cannot take steroids (it gives me troubles breathing!) I am allergic and that is the first thing doctors want to prescribed. I do take Advair 500 inhaler twice a day and Spiriva Handihaler once a day. I am also allergic to Albuterol (it gives me problems breathing, too).

If I get a touch of something, I do what the hospital would do and take antibiotics like a Z-PACK and I do the nebulizer 4 times a day using Bravana and Levalbuterol Inhalation Solution 6 times per day (they tell me that this is different than regular Albuterol which gives me troubles breathing). I found out I was allergic when I went into the hospital because I couldn't breathe and the Albuterol nebulizer treatments in there were making me worse than when I first got to the Emergency room, but I had to tell them for 2 days before they changed my treatments to the Levelbuterol and the Brovana.

I also have a fast-acting inhaler which is Xopenex because I am allergic to the Albuterol.

She needs to learn breathing exercises like the "4-7-8" (breath in to the count of 4, hold to the count of 7 and breathe out to the count of 8) and to learn the "Pierced-Lip" breathing. You do this when you feel out of breath. There are classes to take to learn all these things and how to cope. Call around.

Also, I take small amounts of Xanex. It helps calm you so you can breathe better. You cannot turn anxious or frightened or you will have troubles breathing. So learning to breathe right is important.

Doctor can tell if there is infection when he listens to the lungs and if they are congested. If there is fever, then doctor will give meds. Drink lots and lots of water as it helps to keep congestion out of lungs. Have doctor prescribe an emergency antibiotic for her to keep on hand should she get sick on a weekend etc.

Have her do the nebulizer treatment BEFORE she does any inhalers to open the airways and allow the inhalers to work better. (You can learn these type things at a Breath Better course).

It doesn't take much or long to go down hill when you have COPD especially if you are not careful. You must stay away from smoke or anything else that may trigger an exasperation attack. (My son burnt a steak under broiler and that put me in the hospital for a month!) And she should not be in the house if the oven is being cleaned as smoke will come from the hot oven.

She needs to learn a lot of things to deal with the COPD and the more she knows, the calmer she will be and the better she will breathe.

It DOES take a few months to get all the way better after an exasperation attack and going to the hospital. Don't expect results in a couple weeks. It is more like 2-3 months. Maybe more. And be faithful in doing the nebulizer treatments the amount of times they should be done per day, including in the middle of the night.

When I first get home I, too, struggled to get to the toilet, and I was on oxygen therapy at the time. Gradually it gets better where you can go without the oxygen during the day but leave it on at night just in case since you don't know what your breathing is doing then.

I am surprised they have not put her on oxygen therapy as yet.

And, it is tricky thing: You can feel like you are breathing OK but your level will be below 88% meaning you need oxygen. Also, you can be on oxygen and feel you cannot breathe when your reading is above 90%! Once your Mum knows things like this, it will help her deal with all of the things that are involved with COPD. Hope I helped you guys.

annenic profile image
annenic

I think you should chase up on the oxygen. That should help alleviate some of the breathing difficulties. If she was told in June she may need it I would definitely say she needs it now. I don't need it myself (yet) but from what I read it sounds like your mum does. Wishing her well x

Biddy_ALUK profile image
Biddy_ALUKPartnerBritish Lung Foundation

Hello Janettay,

You must be very worried for your Mum, I hope you manage to get the help and treatment she needs.

Why don't you give us a call here on the helpline? We have a team of respiratory nurses who can discuss Mum's condition and symptoms, and advisers for all the non medical questions.

We are here now, and open Mon-Fri 9am-5pm.

Biddy

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