How to explain that I can't talk when... - Lung Conditions C...

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How to explain that I can't talk when I can't talk?!

Higger profile image
34 Replies

I would really appreciate some advice on this. It's becoming be a real issue for me.

I'm new here so it may help to know that I'm 73 (female) was diagnosed in 2002, now classed as "Very Severe" (predicted FEV 24.3%). I've done the COPD re-hab course and found it really helpful. I don't do formal exercise at gyms, health centre etc. However, I see my home (a cellar and attic and two floors in between) means there are stairs to negotiate. I don't/can't avoid them especially as I am sole carer for my husband who is severely stroke damaged, permanently catheterised, recovering from a hip operation (2 weeks ago) plus other health issues. My joy is my garden so that keeps me pottering too. I eat well and keep well, though the last two years have been extremely challenging. Our house is now well adapted to his needs, so life is doable.

However, I now have to engage with the outside world and find that it, literally, knocks on the door at the most awkward times, eg when I've just come up from the cellar and need time to recover. I must answer because it could be necessary and important. So there I am, with just enough breath to be able to say "I'm OK. Breathing difficulties. COPD. What do you want?" and go into recovery position (There's a support/propping place just by the door) Will they tell me? No, they won't! They'll want to tell me about their friend whose got it, tell me what to do, want me to tell them what to do, want to call an ambulance, They hear as anger my repeated "No. Thanks. Can't talk. What do you want?" (each word necessarily punctuated by a gasp). They get offended! I find myself getting angry at their taking offence.

Oh dear!

Yesterday someone canvassing for the local elections took himself and his clip board off in a real huff for my "refusing" to talk to him. A bit thick, I thought, bearing in mind his repeated refusal to tell me who he was and what he wanted.

I expct it was very difficult from his point of view too.

Please, has anyone any suggestions about how I might in future avoid this sort of ridiculous (and often upsetting) encounter. How could I have helped him understand what I needed from him? I find people often just don't (or can't) "get it". And I haven't the breath to tell them all about it when I need to.

Help!

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Higger profile image
Higger
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34 Replies
fidgetandscooter profile image
fidgetandscooter

I sometimes have this problem as I have to negotiate a large dog who wants to get to the front door first.

I would be very tempted to make yourself a prompt board. It needs to be about A4. Write something like....please bear with me whist I get my breath back. You talk I'll listen.... then get the A4 card laminated so you don't keep having to make another one. I hope that doesn't sound daft, but it might help.

in reply to fidgetandscooter

Brilliant idea!

Damon1864 profile image
Damon1864Volunteer in reply to

I agree what a fantastic idea😊 Bernadette xx

watergazer profile image
watergazer in reply to fidgetandscooter

great idea

Comino2 profile image
Comino2 in reply to fidgetandscooter

Great idea,can we have one that works for answering the phone when out of breath too xx

jmsutt73 profile image
jmsutt73 in reply to Comino2

Hi Comino2..The phone? Caller id is a godsend. Here

we can 'bundle' Internet, landline, and cable. Callers' name shows up on the tv, so we know if it is an important call. Most are not, so I don't bother to answer... Hope this is helpful.

I agree with fidgetand scooters idea about a card.

Please do remember Higger that this is your home and nobody has the right to be so rude to you. If it is not somebody whom you are expecting don’t open the door.

I do this all ofthe time. If they really need you they will find some other way of making contact.

Lemon7 profile image
Lemon7

You might want to have a sign outside front door saying no sales, cold calls etc. My mum's neighbour has that to avoid answering the door to unwanted callers.

NuttyNan9 profile image
NuttyNan9 in reply to Lemon7

This doesn't always work very well. I have this on my front door but everyone just seems to ignore it. We've now bought one of those video doorbells and its brilliant. Don't have to go to the door unnecessarily as I just speak to them via my phone app. I find it the perfect solution as I only need to actually go to the door if it's someone I want to let in after speaking to them. 🙂

Lemon7 profile image
Lemon7 in reply to NuttyNan9

Didn't even know you could get such a thing. What a great idea. Between unwanted people at the door and so many on the phone no one gets any peace and quiet anymore.

NuttyNan9 profile image
NuttyNan9 in reply to Lemon7

Exactly 🙂 I agree with you entirely 🙂 the video doorbell I have is Ring and it also records movement by the front of our house and saves the video to our phones. Thankfully the only ones creeping around outside are the badgers and an occasional fox. 😊

soulboy118 profile image
soulboy118

I no longer tell people i meet or engage with that i have copd , they mostly ask " whats that" im fed up with explaining, so now i just say ive got asthma and everyone knows what that is , is saves time and energy

fidgetandscooter profile image
fidgetandscooter in reply to soulboy118

I'm afraid I'm a little more blunt. I just say that my lungs are knackered!!!!

Gingeros profile image
Gingeros in reply to fidgetandscooter

When It's obvious I'm having problems breathing never mind talk to them, if they persistently asking questions and wanting reply I show them ✋ sign and then tell them my Lungs are no longer in full working order in other words knackered. That's if they stay long enough for recovery.

Like the idea of prompt card either on door or near.

Lemon7 profile image
Lemon7 in reply to fidgetandscooter

Ha, ha. Love that response!

sassy59 profile image
sassy59

You’ve had some great replies Higger and I agree with all of them. Hope that helps you as you’ve enough to deal with without encountering the thick and ignorant.

Take care and welcome to the forum. Xxxxx

2greys profile image
2greys

Anyone knocking the door without a prior appointment will always be wanting something from you, Just shrug your shoulders, point to the letterbox and then close the door. You are under no obligation to talk to anyone, even the police, it is your human right to remain silent.

Ozzy16 profile image
Ozzy16

I know exactly how you feel i have the same problem people just do not understand that the best thing to do is just leave me alone and let me recover myself no one can really help

stamford1234 profile image
stamford1234

I grab my spacer and inhaler, it generally does the trick. I can't concentrate on what people are saying, let alone reply when I am really short of breath. Don't let ignorant people get you down

Hacienda profile image
Hacienda

I Like the Card Idea, I Think I will do that myself. People can be so Inconsiderate & Rude. I am Looking for a Big Sign saying No Cold Callers Wanted Here, The small Window stickers are not seen at all !!!!

Anyway , Welcome to The Forum Hun. Please continue to Talk to Us. Love n Hugs. XXXX

Letitgo profile image
Letitgo

Hi. Sorry to hear you have to suffer the indignity of facing no compassion when you are clearly struggling. Anyone who gets grumpy or who won’t wait for you to recover without hassling you is not worth your concern. I wonder if one of those new gadgets might help. You can have a doorbell which has a camera. Doorbell goes and you can see on phone, iPads etc who it is and talk to them, or choose to not answer the door. Someone at work has one and loves it. Saves the rush to the door. Can just say I’m coming but will take me some time. If they don’t wait it’s there loss. I understand they are simple, cheap and easy to set up. Might be worth considering. I can find out more from those who have one if you would like. Good luck x x

syntax profile image
syntax

Agree with most replies,but have not read all.Could you put notice on door with

something like " Please do not knock unless absolutely necessary. Owner has C.O.P.D.

and will not be able to speak through lack of air."

Aingeful profile image
Aingeful in reply to syntax

I think that might leave some people in a bit of a vulnerable position? There are some very dodgy cold callers out there! They might take advantage?

syntax profile image
syntax in reply to Aingeful

It is possible l suppose. Would need one of those cameras connected to phone

whereby you can see who is there,and ask what they want.This would mean no

going to door ???

Aingeful profile image
Aingeful in reply to syntax

That would be the ideal solution. I can see who is at my front door from my spare bedroom window. I make my decision based on whether I like the look of them or not! I did read that some of these dodgy callers keep a record of where vulnerable people live. I live in an area of bungalows where there are quite a lot of elderly people,some of them are infirm.Its a shame that we have to think like this.

syntax profile image
syntax in reply to Aingeful

As do l,but l spend my time upstairs fixing phones

and watches.Something new l have learnt to do since

cannot work.

Violetta25 profile image
Violetta25

Get one of those signs 'No cold callers'. I don't answer either my phone or my door unless I'm in the mood to. Just because they are there doesn't, in my opinion, mean I'm obliged to speak to the world and his dog just because they've decided. Despite this, maybe because of this, I'm quite a cheerful character but maybe because I've taken more control of interactions.

Penny326 profile image
Penny326

Hi Higger, I'm a little bit cruel I'm afraid, I'm on 24/7 oxygen so when I answer the door with my face mask on and gasping for breath they usually scuttle off 😁.

I find coming straight out with "lung disease" shuts a lot of them up as well but my final really naughty one is...I'm deaf so if I'm not expecting anybody I dont put my hearing aids in and can't hear the buggers knocking. 😁 my friends know how to get me and that's the important bit. Xx

Jollj profile image
Jollj

Hi, I am not at your stage yet but my mother was in similar condition for years and lived alone,she used to get worked up when anyone called,mainly out of frustration as she was always very active till she became stricken by the disease,after time my brothers and I managed to get her to ignore any calls whilst she was not at her best using the pretext that if it is important they will call back,eventually she took everything in her stride and lived a relatively stress free life for the rest of her days,sometimes you have to look after no 1.

peege profile image
peege

Just want to say a big bravo for all that you do. I know what it's like caring for people with severe stroke damage, very hard work, at times very sad.

I too live on several floors, it's great exercise, we need strong legs for our lung health. I don't answer the door if I don't know who is there, if they know me they know I could take a while and be patient.

I have a little spy hole I can look through, easy to fit by anyone with a drill.

I'd definitely put a little sign by the door bell simply stating 'Absolutely no cold callers'. I wouldn't be putting up anything to let strangers know there are vulnerable people inside.

I live in a town so regularly people wanting to sell ie dusters, want me to order fresh fish or suchlike ring the bell. I certainly dont answer the door in the evening if I'm not expecting anyone. My home is my castle 😁

All the best. P

Oshgosh profile image
Oshgosh

I thought of the prompt card. Too You need to put on it that you have a lung disease( don’t mention COPD.) the no cold caller sign would be useful for you. Hi

Put on for them to leave info/ keep talking.

Don’t know if this will help,if I get cold calls,I say thank you,end call.

On the mobile to my friends,communicate by text oremail,it saves my breath for the important stuff.

I hope your husband is recovering from his surgery.

ssafa profile image
ssafa

I agree with what has been said plus what you can find out is if your neighbourhood is a no cold calling zone which has two positives.

1 You can point out the door sticker you can get once a member. The Local authorities are keen to legalise these zones as it helps to maintain some form of security for old or vulnerable adults.

2 You can report anyone who continues to keep calling.

You do in fact highlight a serious problem for vulnerable people and we need to ensure all options are made open to us and ensure support is available. It is hard to accept help and I do know that some people don't want to think that its a slippery slope, and once on it all will be bad, what it is, is, the start of a good support mechanism that should bring some reasonable quality of life back to us all.

oneofakind109 profile image
oneofakind109

You might want to get ring door bell which allows you to and talk to a person at your door through your cellphone

Higger profile image
Higger

Hello all you good folk. This is Higger, replying to all of you. I hope it works.

I know it looks as though I'm replying to myself but there are so many thoughtful, kind and wise replies I couldn't think of a way to let you all know how very much I appreciate the time and care you've all taken to respond to my post.

I'm definitely going to make an A4 sheet asking unidentifiable callers to talk while I listen. Brilliant!

I would like to be more picky about opening the door, but I don't know whether I could cope with the technology. My mobile isn't very sophisticated - doesn't do apps - but I do have an iPad which is quite big . Trouble is, my hands are always full these days - both literally and metaphorically - so I'm wondering how I could keep it near me all the time. I'll bear that possibility in mind so never say never. It is really interesting to find out what's available these days. Thanks to all for the information

Time was I could ignore the doorbell, but now that's not an option. I wish we didn't need so many deliveries and visits from health care people who give a day of arrival but never a time. I've no way of knowing whether a caller is wanted or unwanted, And I really do want the wanted ones. I suppose there aren't that many who are unwanted and difficult. It's just feels that way when you're struggling.

I do confess that I've never had a problem with solitude, and being 'up for grabs" is difficult for me. Your helpful advice has helped me think more clearly and confidently about the lines I need to draw to keep safe.

Thanks to each and every one of you.

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