Hello everyone. New COPD carer here - Lung Conditions C...

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Hello everyone. New COPD carer here

david71 profile image
29 Replies

Hello everyone and thanks for reading. My name's David, I am 43 years old and I'd like some advice and hopefully some support. My Mum who's 69 hasn't been well recently and I have come over to stay at hers for a while to help look after her, she has had a very bad bout of flu recently that is lingering as a chest infection…..but it's more complicated than that.

Last year she was diagnosed with COPD, she has been a smoker all her life but gave up successfully as soon as she was diagnosed. I have been in a very demanding/stressful job for the past couple of years, that took up so much of my time and a consequence of that was that I have been out of the loop concerning my Mum…..she's also played it down very much and was reluctant to tell us, she has in a way buried her head in the sand, hoping that if she didn't acknowledge it, it would go away…...now that I have come home there's a lot of catching up to do and I am feeling overwhelmed.

I have been doing some research and there's so much information available……I don't know where to start. I have used forums before and think that they can be a brilliant source of support so am keen to say hello here to the fellow members of this group, I have lots of questions and look forward to making some friends who are in a similar situation. I won't post any more for now as I need to get off to do some shopping for my Mum. She has been eating a very poor diet so I need to put together a meal plan and cook her some good nutritious meals to help her with her recovery from this chest infection. The COPD is a different matter that I need to continue looking into to see how we can best help my Mum. Sorry if I have rambled on here…….lots of emotions and feelings going through my head right now, just wanted to introduce myself and say hello.

Many thanks

David71

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david71
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29 Replies
chflynda profile image
chflynda

Hello david71 welcome. I am sorry to hear your mam had been so poorlly, I am sure like many mums including myself,playing it down is our way of trying to protect the ones we love so dearly. Its great that she has your support. I dont have copd and so not the person to offer the advice you both need but the going to doshopping and making your mam some nutritious meals is sure a good starting point. Make sure you look after your own health too, your mum is a lucky lady to have such a caring son. Take care both of you, lynda x

david71 profile image
david71 in reply tochflynda

Thank you x There's a lot of info to take in and I have quite a lot of catching up to do, I'll keep posting updates here.

david71 profile image
david71 in reply tochflynda

Thanks Lynda and yes we understand that My mum was trying to protect us by keeping things to herself, it's good that everything is out now and that we can all refer to all the great info and support on here. I am taking good care of myself and my brother and sisters are all doing their bit too X

TequilahCat profile image
TequilahCat

Hi David

Glad you're here! This is a really awesome supportive group.

I too am sorry to about your mum. It is difficult to be faced with the situation you're in. I know, as my mom was a lifetime smoker and had heart problems all her life. My father I suspect had lung issues but tried to live his life viewing himself as healthy with lots of energy and strength. I was the primary caregiver for my dad the last couple years and it is not easy to be a caregiver.

Remember to take care of yourself through this time. Caregivers are often stressed & a good support system is key! You're making a great first step in getting your support systems in place.

Nutrition is a big factor with any illness as it is with COPD ... People afflicted with COPD require more nutrition and calories because it takes more energy and effort to breath. When I was diagnosed with Pulmonary Hypertension, My first concern was nutrition. COPD presents a number of additional special factors.

Anyways, welcome to the group! You are in the right place :)

Cindy

david71 profile image
david71 in reply toTequilahCat

Hi Cindy, thanks for the welcome and for sharing your experiences and advice. I am very lucky in that I have a strong network of support and my brother and sisters are also sharing the load. Since my Mums visit to the doctors where she was prescribed some steroids she has really picked up. I'm also managing to get her to eat some small but nutritious meals so she is def looking better. It hasn't helped that she has become ver down as a result of being poorly with this flu virus and housebound for so long, but there's a definite difference in her. It's also huge peace of mind for her that she is now getting tests done at the doctors, lots of appointments scheduled for next week. Thanks again for your advice x

sassy59 profile image
sassy59

Welcome David and what a lovely man you are. It must be so daunting for you to be caring for your mum, even though you seem happy to be with her and doing that, but you have come to the right place for help, advice and support, with a bit of humour thrown in for good measure.

BLF can help with information and you can contact them to find out more. I do wish your mum well and hope she soon recovers from her chest infection. A good diet is key to recovery so you are doing a great job there making sure mum eats properly.

I care for my hubby who has sarcoidosis and COPD so would also advise you to take good care of yourself too. You matter a great deal, trust me.

Hope to hear from you again very soon. Take care xxxxx

david71 profile image
david71 in reply tosassy59

Hello Sassy, thanks for your message and for the warm welcome. I can't pretend that I'm a saint by coming over to look after my Mum, I am very lucky in that I have a few weeks off from work so it was the natural thing to do. After being so busy at work for so long and not visiting here as often as I would have liked it's been nice to come back and spend some time with everyone. Like I said I consider myself very lucky that I have a strong network of support to assist my mum, she's very lucky that she has that too and she's very aware of it and grateful for it. Best wishes to you and your husband and looking forward to chatting with you more x

Jolyn profile image
Jolyn

Hi David, Welcome to the group. You will get lots of advice from the lovely friendly people here on this site and the BLF helpline is available for you to talk to someone if you have any worries. Lyn x

david71 profile image
david71 in reply toJolyn

Thanks Lyn. Yes, lots of good advice already on here. Thanks for your message x

Lyd12 profile image
Lyd12

Hi David

Your mum is lucky to have a son who cares, caring is not easy. Your mums appetite may not be good whike she has an infection, and things like chicken soup, omelettes, anything light and easy to eat would be more welcome than a hearty dinner. Im speaking as an 81 year old lady with bronchiectasis which leaves me more prone to infections. she will welcome someone who does the washing up and obvious jobs but not springcleaning!

Hope mum feels better soon, and look after yourself. Love Iris x

david71 profile image
david71 in reply toLyd12

Hello Iris and thank you for your lovely message. I have taken your advice and made simple meals, I have some chicken soup on the hob now :) I am also keeping busy tidying up and looking after the animals (2 cats and 2 dogs)….it's a full time job. My mum is feeling much better already and the steroids have helped massively with her breathing. Thanks for you kind words and concern. Take care and keep in touch x

Lyd12 profile image
Lyd12 in reply todavid71

so glad to hear Mum is feeling better. Its a good idea to freeze some soup away in portions, ready for when you fancy it. animals take a lot of looking after, you will need a lie down after all this work! Very best wishes, Iris x

casper99 profile image
casper99

Hi David and welcome to the forum. You will get plenty of helpful advice from the people on here.

It's great that your mum has such a caring son and I'm sure, when you get her eating right, up and running, that in a few weeks, you will see an improvement in her well being.

When I was diagnosed, after getting breathless on inclines, the nurse that did my Spiro test, scared the life out of me. It wasn't what she said, it was her whole manner, her sympathetic look and tone, I felt like she was talking to a dying woman, but, I didn't even feel ill.

I went into a deep depression. Couldn't eat at all. lost loads of weight, lost interest in life. So, when I first found this site I was rock bottom. By then, I was having severe panic attacks that made me feel breathless. Coming on here gave me all the information and support that the surgery failed to provide.

Your Mum probably knows very little about her COPD and it has scared her. I admire your determination to be proactive in getting her back on track. xx

david71 profile image
david71 in reply tocasper99

Hello and thanks for your message, I have already found this a great source of advice and it's great to be able to chat with other people who understand. My Mum has massively improved since being given the steroids, her infection is now clearing up nicely which now means focusing on the long term management of the COPD. Thanks for sharing your story too, that's awful that you received such treatment from the nurse….which sent you on a downward spiral, I'm glad to hear that you found this site and started to feel better from the support you found here. At the moment we all know very little about COPD inc my Mum, my aim is to get as much info and advice as possible and then I'll direct my family to this forum so that they can read up on everything themselves too. Thanks again and I'll report back here regularly x

Maybe just let her know about this site where she can chat with other people who will understand what she is going through

Jolyn profile image
Jolyn in reply to

That's a good idea Mandy...she may be glad of a chat. x

david71 profile image
david71 in reply to

Hi Mandy, that's a great idea but unfortunately my Mum isn't very good with computers and the internet. I have tried to teach her but it's really not something she's very good at (she struggles enough with her mobile phone!)

BUT….I am going to be reading to her all the messages on here so that she can see for herself all the help and support that's available.

peege profile image
peege

Hi, the BLF have a lot of good information if you look into this site info.

There is much she can do to improve her lot. Exercise, start gently and build up.

Good diet, which you're aware of, healthy weight, avoid chemicals & pollution.

Above all, see the gp as soon as shes a bit iffy, if you wait too long an infection takes hold & is harder to get rid of.

There's also much to learn re being proactive.

For ie. Not many of us would ever accept amoxicillin as an antibiotic.

Then we know that one course of any antiB usually isn't enough so it's back to the doc, no hanging about for an appointment, same day is necessary, it's an emergency.

Then it takes us much longer to get back to normal, often weeks after an infection (I take loads of Vits to rebuild my immune system).

When your breathing is poor it's absolutely knackering so it's no surprise she kept shtum. It's easier.

Pulmonary Rehabilitation (PR) is excellent & your mum could get on a course.

Good luck to you both.

david71 profile image
david71 in reply topeege

Hi Peege, thanks for this….loads of helpful advice and tips there in your post that we will put into practice, what you have written makes a lot of sense. I will look into the PR too.

katieoxo60 profile image
katieoxo60

Hello David71, welcome to the site, there are several options for advice and treatments vary from patient to patient. many on here including myself have COPD . BLF helpline can answer many questions and this group can offer advice from experience. Your mum may benefit from pulmonary rehab as she would be given advice and meet others with the same problem in a more informal setting, if able you could go with her. Breathe easy groups are for patients with lung conditions and their families, but not all areas have them. Ask questions on here when ever, I am sure one of us will have an answer. Maybe your mum would like to join our forum, BLF also have a penpal system for people with lung conditions, which is more personal if you have an email address. I am sure with time you will find ways to care for your mum with her current illness, healthy life style is one of the main ways and good medical backup. As your mum is over 60 there are lots of help channels you can go through and some places have carer advice units to support the carer. Hope this helps and we can answer some of your questions when you ask. Take care , best wishes to both of you

david71 profile image
david71 in reply tokatieoxo60

Hi Katie and thanks for your message, some brilliant advice there so thanks. I'll look into the things you suggest for sure. Thanks again x

thatwelshman profile image
thatwelshman

DAVID Sorry for you and Mom, first thing is where is her carer? She or he should be on the ball,if she not got one WHY? FIND THR REASON FOR THIS DAVID HER DOCTOR SHOULD HAVE SET THE WHEELS TURNING,If not do along and see him/her and explain your situation she should be having District N urse call on her to make sure all ok, get this organised or by just even talking to her doctor he might put u on the right path. talk to someone about your Mom. the help is out there for you both. good luck

david71 profile image
david71 in reply tothatwelshman

Hi there, I'm not sure that my Mum is entitled to any kind of 'carer'??? although the district nurse visit is something that I will look into. Thanks for your message.

david71 profile image
david71

Thank you everyone for your advice and support, and for sharing you're experiences too, it's very nice to be able to chat with you and good to know that there is support here. I'm sorry that I don't have time at the moment to reply to each comment individually but will try to do so later. My Mum is very lucky in that she has 5 children and we're all doing our bit as and when we can to help her. Since being diagnosed with COPD last summer she has very much ignored it and played it down as she obviously didn't want us all to get worried, but we have all done our own research here and there. I think what has brought everything to a head is that she recently came down with a flu virus, I wasn't around at the time but she was really, very poorly with it and hasn't quite shaken it off, it's developed into a chest infection and her breathing has really become a struggle. She gave up smoking straight away after being told that she had COPD but I think that this chest infection and the breathing problems have been a wake up call for all of us including my Mum that COPD isn't something we can make light of or ignore. In recent weeks she has had several visits to the doctors for different antibiotics to clear the infection from her chest, she has had good days and bad days and her breathing especially has frightened her. On her 3rd set of antibiotics it was clear that it just wasn't shifting and so yesterday morning I made an appointment for her to see the doctor again and this time I went with her. The doctor was AMAZING, she hadn't seen him before but he literally give her a really thorough examination (that she'd not received on any of her previous visits) I can't express just how good he was, he could see my Mum was scared and was so patient and understanding with her, we must have been with him for at least half an hour….He has ordered blood tests, he took swabs from her nose, he took a sputum sample, she has an appointment for a COPD review next week, he basically told us that he was giving her a full MOT!!! He also prescribed some steroids for her to help with the breathing.

Just receiving this treatment from a wonderful Doctor has given my Mum a huge psychological boost……She has really picked up…..I think that she was feeling frustrated that she didn't seem to be recovering from the infection and didn't feel like she was getting anywhere despite her doctors appointments. I'm so grateful to the doctor as his plan of action has really put her mind at rest that she is in good hands.

She's just come through from her bedroom as I am writing this and she has had a good nights sleep so that's great too. I'll crack on with some jobs now and report back later. Sorry that I don't have time to reply individually to your advice and comments so far, I'll set aside some time tonight to do so.

Thanks everyone, for your caring x

david71 profile image
david71

I am so comforted and touched by all your comments and I will reply to you you all individually….what a wonderful forum, Thank you to all of you for your help, support and advice….Mum has had a good day today X

FarmerD profile image
FarmerD

Hello David,I,m another David there,s a lot of us about!i would just like to council

Against googling Copd as you may get some real scare stories.I have very severe emphysema sometimes referred to as gold or end stage it I still do most things just a bit slower( a lot slower lol ) and !m not dying just yet.A good diet is essential as is as much exercise as is comfortable.I,ve had to take steroids all of last year and still this year to control my breathing but hope to cut down the dose from now on.Does your Mum have a consultant yet if not ask for one as it is a very specialised subject still.Pulmonary rehab is a good idea ask GP for referral.Sounds to me like you,re doing everything right so carry on and good luck.Suggest to your mum to join in here ,we,ll do all we can to help.Kindest regards to you and mum.D. 😀

david71 profile image
david71 in reply toFarmerD

Hi David and thanks for your message. Yes, I have been very wary of googling COPD as I know that this can lead to some very scary and inaccurate info. Very glad that I found this site quickly. Thanks also for your advice, there's such a lot to take in and I am slowly coming up with an action plan to move forward with the long term management of mum's COPD. Without wanting to overwhelm her with information for the time being I have been telling her that it's important that she eats healthily so that her body can recover from the infection and that she needs to be patient, do things much more slowly and gently as she regains her strength. The steroids that she has been taking have made a huge difference, as has the visit to the excellent doctor that we saw this week. She is having blood tests on Monday followed by another appointment with the same doctor on the wednesday and also a COPD review the same day. Just knowing that these appointments are in place have had a psychological effect on her wellbeing. When I turned up a week ago she was in a state of despair, now she sees that there's hope and that things are going to be manageable with some lifestyle changes. Thanks again for your message and take care of yourself :)

david71 profile image
david71

Thanks Pat and Graham. Such a lot of reading to do, what a brilliant resource this site is!!!

casper99 profile image
casper99

I'm so glad you and your Mum, are feeling much more positive Nothing beats having a Dr that genuinely wants to help his patient. It's all we ask for really. xx

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