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advice please coping with relative with severe emphysema

owl33 profile image
40 Replies

Hi my mum has sever emphysema, she lives alone at home and is really struggling.She cant walk more than a few steps without getting breathless.

I took her to a private consultant in July as we were unable to get a nhs consultant apointment.

He diagnosed severe emphysema and said there wasnt anything more that could be done, other than possibly long term low dose steroids.

She has seen respiratory team who say she cant have oxygen as she is a retainer.

She has had four stays in hospital this year, the last time i refused to take her home unless a care package was installed.She has repeated infections, is extremely depressed and wont eat, and has lost weight.

I keep asking doctor for help, they sent locum round who prescribed diazepan for anxiety attacks.

I am also trying to work full time as well as going to care for her when i can as i live an hour from her.

Can anyone offer any advise as to how i can improve her quality of life and get her some hope as she has lost all hope and has just about given up.

I did ask doctor about low dose steroids which they have refused as they say she will get repeated infections as it will lower her immunity.

Mum says that she thinks the doctors dont care as she is 77 and just want her to die.All they do is keep giving emergency packs of steroids and antibiotics.Because of the repeated antibiotics the oxygen team wont assess her as they say she has to be off them for minimum of 6 weeks for true assesment.Some consultants in hospital say she should have oxygen and others say she shouldnt.They also will not let her have a nebuliser.Please can someone give me some advise im at my wits end with conflicting advise and just hate seeing her so distressed.She has severe depression due to being scared, and also panic attacks.

40 Replies
Bevvy profile image
Bevvy

Welcome to the site. Sorry to hear how much your mum is struggling. The first thing that springs to mind is, has she been offered pulmonary rehab course? This is a course that is offered to people with lung conditions. The exact course is slightly different around the country but basically it is twice a week for 2hr each session. Person has assessment carried out by specialist physio or nurse. The first hour of each session is a personal exercise programme, with second hour is a learning programme from specialists in how to live as well as possible. The course does have good outcomes and improves peoples current situation. I can’t remember how many weeks the course runs for but it really is worth doing.

owl33 profile image
owl33 in reply to Bevvy

Hi

Thanks for your reply.

She was referred for this earlier in the year, and we actually got the first appointment yesterday.The nurse there was shocked it had taken so long and said mum must have slipped through the net, and that she should have been seen urgently.Mum was upset as she could see people on treadmills etc and with oxygen walking around, and she has to be pushed by me in a wheelchair.The nurse said that they will come to the house to do the course with her in a a week or two as i work i cant get her there every week.They said they will use virtual reality goggles or something so she thinks she is on a beach, or words to that effect. I think they have left it too late and she should have been seen two years ago, but obviously because of lockdowns she hasnt been seen. Im hoping they will come out to her soon as she really needs some thread of hope to cling on to.She has just called me to say the district nurse had been to attend an ulcer on her leg and has emailed the doctor to raise her concerns about the lack of care my mum has had from the doctor and to request the doctor visits her urgently to asses the situation and her treatment.and NOT to send an urgent care practitioner which they have been. Hopefully she will get some support soon.

Also to add, the nurse was also surprised the doctor hadnt done spirometer tests or sputum samples for years.

Bevvy profile image
Bevvy in reply to owl33

Could she not attend a class in person via use of a taxi or even hospital transport. The reason being is that the peer support could really help her. However if not she will still get benefit from the nurse attending every week.

It’s good the district nurse has picked up on how vulnerable your mum is and hopefully she will now be able to access the services she requires.

Finally I will say that although she wasn’t seen when she should have been it is definitely not too late. If she embraces the programme she could well find her health improves. I have to be honest and say for me it wasn’t the best programme (partly because I have additional different health issues) but anecdotally from this site and others, many many people have seen significant improvement in their health especially their general fitness.

I hope that however your mum accesses services, it helps her situation significantly and by that it will help you as well.

sassy59 profile image
sassy59

Welcome to this friendly, helpful forum owl33. I’m carer for my husband Pete who has COPD (chronic bronchitis).

How distressing for your poor mum feeling she has been given up on. There is help and support out there and it’s never too late to get it. Doctors often don’t realise what’s available so you need to keep going and don’t let your dear mum give up. You both need support as you work whilst trying to do your absolute best for your mum.

It’s good the district nurse had been told about what’s been going on and pulmonary rehab could well be helpful.

I wish you and your mum well and do keep in touch. Xxx

Lol1944 profile image
Lol1944

you have been given good advi e from other posters. I find it very distressing that your mums health has deteriorated so badly due to absolute neglect from her gp. Now that the help has started rolling somewhat do not be afraid to denand that the gp concerned gets his finger out. He is a general practioner and if he is unable to adequately assist your mother he has a duty of care and mustbe told in the strongest possible terms to refer,as necesary, not to do nothing. To date he/she has been a disgrace.

Biofreak profile image
Biofreak

Hi Owl. I am absolutely appalled that your Mum has been left like this. It's more positive that the district nurse has become involved. You say that you think it may be too late and I can understand why you feel this way as I was in a similar situation trying to get the GPS attention for my husband during lockdown. After several admissions to hospital via A&E he was finally diagnosed with late stage IPF. A respiratory doctor at the hospital was very direct with me and told me that he didn't have very long left. I was devastated but actually the same doctor said he would write to his GP and recommend palliative care. Once that had been done the GP referred him to community palliative care. Palliative care were fantastic and went about sorting the best medication for his condition and he was continuously monitored and got some equipment to aid his mobility round the house, some breathing Physio at home. He was even admitted to the hospice for some rest and proper attention to his dietary supplements to gain some weight. If you could speak to the GP and ask some straight questions about her prognosis and if referral to palliative care is an option I think she would get the attention she needs as she sounds very poorly. I know the word palliative care strikes fear in people but our experience was really positive. Good luck to you both.

garshe profile image
garshe

Your Mum should have a Respiratory team attending her. They are fantastic. I also have Severe COPD and am 78 . I can call and speak to my team anytime and they will come out to my home if needed. Your Mum needs to keep active otherwise her short of breath will get worse. Anxiety can play a big part in her condition and affect the way she breathes. I would recommend a Pulmonary Rehab Course as she will benefit from this. Living alone must be scary for her ,I hope she gets the help needed. xxSheila 💕⚘

Ergendl profile image
Ergendl

The other answers are so good, I have nothing to add, but just want to say how much I feel for you and your Mum after all you've been through. Hoping you reaching out to us here will help bring about as much of an improvement to your lives as it did to mine xx

battison profile image
battison

your poor mum and awful for you. I’ve found getting medical attention for my husband’s severe COPD over last couple of Covid years was dreadful and frightening. He was unable to walk far or do anything without becoming breathless, depressed and unwilling to eat. But, after a 2,5 years wait he’s now almost finished a pulmonary rehab course. It has been astonishingly beneficial! Both physically and mentally. It takes place in a local gym. We book a taxi there and back. I think this helps keeping him at it and saves him anxiety about the journey. Anxiety’s a big feature when breathless, they cover this in the course -even do meditation. Getting out and meeting people in the same boat helps too and everyone is encouraging each other. I really recommend this for your mum, for us it is changing our lives. Best wishes to you both x

Izb1 profile image
Izb1

Hi owl33 and welcome to the site. I cant add anything to all the posts you have received exept to say that your Mums gp has been dreadful in providing care for your Mum, could you request to see a different gp, you must keep pushing. I wish you and your Mum all the best x

owl33 profile image
owl33 in reply to Izb1

Still struggling to get gp apointments here im afraid.

Izb1 profile image
Izb1 in reply to owl33

Yes its the same here Im afraid, but last time I needed a face to face I insisted and they saw me the next day x

peege profile image
peege

you've had some great replies so cant add to them except to agree with them all and reiterate that Pulmonary Rehabilitation (PR for short) is brilliant. They assess and adjust to each individual's capabilities.

It's a sad fact that in some areas we have to be proactive in getting the medical support we need and deserve, very difficult for your mum as shes so depressed - not surprisingly 😢.

In my area of Gloucestershire there is a weekly post PR course, funded by NHS & run by specially trained leaders. It's marvellous & includes socialising beverages & biccies at the end. These classes are not publicised at my GP surgery - even though I took them fliers!

owl33 profile image
owl33 in reply to peege

I have just emailed the doctors demanding an urgent visit to her home to see her.She cant drive and is totally reliant on me and my brothers for her appointments and general care.Other than two carers visits a day. Ive requested that the pulmonary rehab is set up as a matter of urgency. Doctor just kept saying there was a backlog due to covid, all the lung health social clubs are still closed, as ive rang a couple.

battison profile image
battison in reply to peege

yes we have the after PR course too where we are in Erewash (Derbyshire) we are thrilled because hubby has so improved after PR. I did not know it was possible!! I thought it was too late..he (68) was so frail he barely moved. So next he goes on to FREE further 12 week course and after that FREE gym membership for six months. It’s so brilliant, the way they assess individual capabilities, no pressure….his outloook and self esteem has soared! Fantastic NHS do this, must save costs on hospital admission & illnesses.

Bingo88 profile image
Bingo88

Good morning owl33. You have had all the advice needed. I just wanted to say my thoughts are with you both. Its very difficult for you seeing your Mom struggling and suffering and you can't do anything to help her. I have been in that situation and it's upsetting for you. I just hope you have support as well for your emotional situation your going through. If your Mom has a Respiratory nurse or clinic by her. Get them to examine your Mom and see if they can help at all. We will support you anytime you need it on here we are a friendly group. Hope you have a better day. Brian

owl33 profile image
owl33 in reply to Bingo88

Thanks Brian, no we arent getting any help at all. Im hoping a strongly worded email ive just sent to her doctor might get them moving with home respratory team. Mentioned respite care to her but shes not keen.

Bingo88 profile image
Bingo88 in reply to owl33

Yes it's very difficult because a lot of people think once they go for respite it's going to mean they don't come out again And I was specifically asking about support for you because you don't always realise how much of a strain it is on you. Hope you get some help and answers soon. Brian

Karenanne61 profile image
Karenanne61 in reply to owl33

Palliative care is really helping me! It's absolutely NOT end stage care. My team are trying hard to find ways of managing my symptoms. Last night I sat through the whole of a musical without coughing once!!!

Thepainterswife profile image
Thepainterswife

Hi Owl , I’m so so sorry your poor mum has had to go through such a difficult time and that you have had all the stress and worry too . My husband has sever emphysema now , he was diagnosed with Copd 17 years ago so has managed very well and had a reasonably good quality of life for the first twelve years , not so good now but we still manage to stay positive and keep depression at bay for the most part . It seems to me that your mum has been very badly neglected , possibly due in part to the pandemic but nevertheless unacceptable. . Six years ago , after years of antibiotics and steroids I and my daughter found we had to be really quite tough and demand a referral to the respiratory team , once we had that Geoff was given a nebuliser , put on a rehabilitation course and after a while put on oxygen . In 2020 he was rushed into hospital suffering from respiratory failure and was found to be oxygen sensitive ie a retainer but he is still on oxygen albeit ( at that time ) a reduced rate . Geoff has only had one further hospital admission, so far less than your mum , despite now being classed as end stage and on palliative care ( which by the way is amazing - we have so much support now and Geoffs condition has improved!) It does seem to be a battle at times ,for many of us I think , and I too have come up against one Gp who wanted to refer my husband to a mental health team 🤦🏻‍♀️ Three days later he was in intensive care with respiratory failure ! 😡. Just keep pushing for what you need , once you have the right care package things do get much much easier . Please assure your mum that life can get better , my husband is 75 , being very well looked after by the professionals and still finding pleasure in life 😊

owl33 profile image
owl33 in reply to Thepainterswife

Thanks for your reply its very reassuring.My mum is a retainer so they dont want to give oxygen, although others have said she should have some.They contradict each other.Doctors have just called my mum and are sending out someone called a social prescriber?? Whatever that is- but still no doctors apointment. Im beginning to wonder if there are actually any doctors there at all.

Thepainterswife profile image
Thepainterswife in reply to owl33

I know where you’re coming from re the Gp’s but I wouldn’t worry too much about them ,we rarely see a Gp just ring them if AB’s or steroids are needed 🤷🏻‍♀️ what you really need is support from a respiratory consultant and team and the other agencies eg social services , district nurses etc that are getting things in place for you . You’re right too even the professionals have conflicting views , which doesn’t make it any easier for us lay people trying to negotiate the winding road to best care 🤦🏻‍♀️ Just be assured you will get there and things will get easier . I’m sure your head is now spinning with all the advice you’ve been given but hope you’re reassured by the support you will always have on this site 😊 MoyB ‘s suggestions,I thought , especially concerning the meal preparation, we’re particularly good - positivity and normality are key to having some quality of life ! it’s such a pity that your mum doesn’t do tec but at least it will give you plenty to pass on to her . I’ve never heard of a social prescriber but I know there was talk of qualified pharmacists taking over some prescribing 🤔 Good luck , let us know how you go on 😊 x

MoyB profile image
MoyB

I was horrified to read your first post but thankful to read your second and to know that your mum is finally getting some attention!

At 77, your mum is not an old woman! I have friends who are in their late 80s and mid 90s, some of who, like myself (aged 71), have respiratory conditions but who are still going strong and finding enjoyment in life!

I'm sure you're right about your mum being depressed - who wouldn't be, with what she's going through? But there are little things that might help her.

The possibility of pulmonary rehab is really good. If she could meet others in the same boat, I believe it would be a positive thing for her, but even if it's done at home with the nurse, it's a start and should give her some encouragment to believe in her own ability to manage more than she thought.

It's scary when you feel as though you've reached the end of the road - I felt like that a few years ago as was so unwell I could hardly make it into the kitchen and certainly couldn't prepare food or go out anywhere on my own. However, a private appointment with respiratory consultant led to tests and better treatment for me and my health and wellbeing has greatly improved.

The PR course was a turning point for me but my GP didn't even know there was such a thing! Fortunately, a BreatheEasy group started up locally and at one of the first meetings I went to we had a talk from a Resp Physio telling us about Pulmonary Rehab and how to be referred. When I told her my GP had said there was nothing he could refer me to, she was horrified and hand wrote all the details down for me to give him. 'Tell him to speak to ME!' she said.

Small things you might try doing for your mum, for example, might be to give her a houseplant to look after (something that doesn't require too much care, but not something that can be ignored). We're coming up to the amarylis season now, and someone gave one to me once that I got great pleasure from as it just needed a drop of water now and again and grew very quickly and rewarded me with the most beautiful flowers (the stamens can be cut out if the pollen affects her breathing).

Something else might be to get her to note down anything good that happens in the day so that when you phone her or see her, you can go through it with her. If you take her out, maybe try and get a postcard to put in an album or stick in a notebook for her to look back on and remind herself of where she went. That is something I find really helps me when it's dark and dismal and I feel as though I haven't been anywhere for ages. There's something about having an actual postcard rather than a picture on my phone that makes it more real somehow.

In my darkest days, I couldn't be doing with being 'jollied along', but it did help me if people offered me small steps back to normality ie it was nice to have help to prepare a meal, even if all I did myself was peel one potato. I progressed to two potatoes and gradually got back the will and the energy to cook for seven of us last Sunday. I'm guessing your mum is far away from that at the moment, but don't give up hope.

Let things go at her pace for a bit and just mention small positive things to her (drip feeding, I call it) such as, 'Can you hear that bird singing?' or 'Would you like to try this new hand cream? I think it smells really nice.' Maybe you could do a manicure for your mum if you and she are that way inclined. Just having someone smooth cream gently into your hands for you is a very comforting thing and if your mum likes a bit of polish on her nails, that would be nice too (just leave one nail clear of varnish so that if she needs hospital treatment they can pop the oximiter onto that one as nail varnish stops it working).

Lifeline or another personal alarm service may help your mum too, if she's anxious about being ill when she's on her own. I think Adult Social Care can help with these but we got ours from Age UK and I think it's the same thing. It's given my husband and me great peace of mind.

I won't go on anymore as I'm sure you get my drift - small things add up and can lead to big changes over time. No need to do everything at once.

I wish you and your mum well and look forward to hearing from you again.

xx Moy

owl33 profile image
owl33 in reply to MoyB

There are some lovely ideas there thankyou for your support x

MoyB profile image
MoyB in reply to owl33

I hope something helps. Xx

Karenanne61 profile image
Karenanne61 in reply to MoyB

What a lovely, helpful post.🙂 I especially liked the part about 'drip feeding' happy things. Often when I visit my mom she will have saved something from her newspaper, e.g. an article about fashion to show me or something interesting or controversial to discuss with me.

Cloudancer profile image
Cloudancer in reply to MoyB

Fabulous reply Moy x

Patk1 profile image
Patk1

it sounds like she really shouldnt be on her own,struggling as she is.do u have regular carers going in to help her get up+ washed,prepare meals,help her to bed etc? Does she have anyone visiting in day for company?

Does she smoke or vape? If so ,its her choice,but she really shouldnt.

Sorry 20 questions! Trying to see full picture to try help xxx

owl33 profile image
owl33 in reply to Patk1

She has post discharge carers come twice a day half hour each, morning and tea time.Me and brothers take it in turns to be there each evening- so every third day each.I live an hour from her so its a bit of a jaunt.She is under a social worker and care package should now be continued but he is awaiting brokerage to get back to him.When that happens she will have a more consistent care team.She has neighbours that pop in in the day to check on her too.But she is starting to not want to be alone at all.Ive just spoken to doctor again -sending urgent care practitioner to asses her this afternoon and see if she has an infection, and also to talk to her about care going forward.and possible respite care.

Patk1 profile image
Patk1 in reply to owl33

Its good mum has family and neighbours,plus carers.

I t sounds like she needs a gd dr/ nurse practitioner/ respiratory-asthma nurse to start at basics - ensure shes using gd technique,with a spacer,with inhalers Plus advice on how to proceed with them+ any other meds.what to do if feeling worse,what she can take etc

Do u feel antidepressants may help mum,in addition to anxiety meds? Antidepressants may lify her mood& help reduce aNxiety

It maybe worth u reading up on " controlled breathing technique" and its uses. U can practise with her.its a grest ' tool' to use when walking,talking,whn annxious etc

Sounds like mums having tough time& u and family too.there are coping strategies, but one step st a time.id also recommend pulmonary rehab.the social aspect of other people with lung probs is very helpful+reassuring,along with advice+ lectures with tips etc.

Seems like shes b left by services to sink or swim.its wrong.do ask if gp has a respiratiry/ copd or asthma nurse.a gd one can be v helpful + often hav gd advice.

In my area,wr have IHSS - a respiratory team who will call in if mum needs advice if unwell + thinks an exacerbation msy be starting.u need referring by gp

Yr doing well as a family,to support mum.is she able to access internet and here? We r a fab group,with empathy& support.its gd to have you here so welcome 👋🤝. You will find a way through this xxxxx

owl33 profile image
owl33 in reply to Patk1

Thankyou, she cant use the internet and doesnt have a smart phone, she hates technology.Shame really as it would help her i think.

Patk1 profile image
Patk1 in reply to owl33

yes,at least U r here now.x

mogs302 profile image
mogs302

I am on oxygen and I am a CO2 retainer -- both given me by the NHS. Go to another doctor. My local NHS doctor often told me that she was forbidden to do something, but it turns out she was wrong.

Thinkhealthy profile image
Thinkhealthy

could you ask for assessment by the hospital disabled living advisor? Or hospital social worker.

They decide who needs home support to be in place before going home from hospital.

And ask local CAB for advice on her rights for home help.

Age concern will have registered carers - and are often incredible help in situations like this .

Its astounding they wont prescribe nebulizar treatment.

Good luck x

battison profile image
battison

I just want to add the only way I could get proper help from GP was writing e mail marking it clearly in ‘bold’ stating please put this before GP and ensure copy is placed with patient records. Every gp is going to be conscious of medical negligence.

Patk1 profile image
Patk1

Hiya Owl.how did mums appointment go? I do hope it was worthwhile and that u feel a bit more reassured.xxx

owl33 profile image
owl33

They sent an urgent care practitioner-not a doctor- she checked her and said she didnt have an infection. Said she was going to re book her respiratory clinic appointment to see if she can have oxygen, as the antibiotics will be out of her system by then.Chatted to her about respite care and palliative care-which she is referring her for. And then booked her in to have covid and flu jab at home- which is all they care about really. We will just wait and hope the pulmonary rehab comes through asap. She got a call from a well being counsellor who said that she would try and arrange for her to have meet ups at local cafes with others.But as mum said she doesnt drive, we are at work hows she meant to get there, i will maybe look into hospital transport or voluntary car scheme, but she gets scared leaving the house in case she has an anxiety attack.

Patk1 profile image
Patk1 in reply to owl33

Youve done amazing Owl!i hope pallistive care,respiratory clinic etc help.uv done all u can.if you can work on controlling breathing techniqie with her,it will help with anxiety and also with mobility,IF mum uses it.ttouble with advanced disease,we push hard to keep going despite difficulties..we have to bcos if we dont,we lose thst abilitu.obviously,mums been ill,and its hard to get back uo,but the more she helps herself, the better for her.

Perhaps consider antidepressants if mum+dr agree- they help with anxiety too.

It would be great if mim can attend meet ups.getting out gives a boost to feel gd hormones+ give mum a break frm own 4 walls.at our dr,theres a poster with voluntary drivers with a low charge per mile.youve done smazingly wrll,sorting everything out xxxxx

battison profile image
battison

keep pushing for pulmonary rehab owl! Just because she’s 77 doesn’t mean she doesn’t deserve the best care possible. I really feel for her being so anxious. Does her council have a volunteer scheme where a driver can pick her up? Hope she’s claiming attendance allowance too. She’s lucky to have you caring kids but takes its toll on everyone. Wishing you every progress and lots of love to your mum.

mogs302 profile image
mogs302

I received Xanax for my anxiety about going out. I went out and went out, and then I wasn't anxious anymore. You can't take Xanax for long, but it really helped for the short time I needed for ananxiety.

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