Watching my dad suffer with copd. heart breaking

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Allison Posted: 04-17-2011 8:42 PM

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My dad was diagnosed with copd just over 3 years ago (only telling anyone incl. family 2 yrs ago!) He had been coping with it and doing well until Jan this year, when he had to stop working as too ill to continue any longer, at the end of Feb he was hospitalized with pneumonia and he basicallly hasn't been well since, he is back in hospital as of yesterday. Its just heart breaking to se my own dad suffer and I cant do anything to make him better I am trying to educate myself as much as I can.

I guess I'm just here to vent. Ive read through the posts (educating myself) and i admire everyone of you, sufferer and people seeing loved ones go through this.

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harry replied on 04-17-2011 8:55 PM

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Allison:

 I am trying to educate myself as much as I can.

I guess I'm just here to vent. Ive read through the posts (educating myself) and i admire everyone of you, sufferer and people seeing loved ones go through this.

How old is your dad allison ? slug likes to do some venting with his lord charles thingy, it does help to share...any questions ..fire away... slugs had the pnumonia thingy a few times and still twitting merrily online etc....65 years old soon...still learning.... slowly tho....ho ho great to see you helping pops

xxxx

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Wheezyrie replied on 04-17-2011 8:57 PM

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Hi there, education is good. You sound close & your being there for your Dad will mean so much to him. I wish there was more I could do or say for you. I will keep you in my thoughts & am here if you ever want to talk/rant/cry. Hugs.

Wheezyrie

xxxx

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Allison replied on 04-17-2011 9:08 PM

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He is 63, 64 is June. We saw the consultant at the hospital last week for the first time. Basically his right lung is shot, the consultant unsure if this pneumonia or something else, looking at chest x ray between Jan and March the difference is shocking. He was sent for bloods, auto immune groups Ive been told. Its just grrhhhh frustrating, this is our 4th trip over to hospital since the end of Feb, 3rd admission. Questions wise... my word my head is spinning, his doctors (local surgery) are sadly lacking in knowledge with this, they don't seem to be able to offer us much help or advice. I to be honest have only just last night found this site .... wish I had found it months ago!!

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Allison replied on 04-17-2011 9:16 PM

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Wheezyrie:

Hi there, education is good. You sound close & your being there for your Dad will mean so much to him. I wish there was more I could do or say for you. I will keep you in my thoughts & am here if you ever want to talk/rant/cry. Hugs.

Wheezyrie

xxxx

Yes we are a very close family. Although I have been mainly going to the appointments, I have a brother, currently in the raf, so isn't about so much ... and well... my mum until the last month or so has been pretending it isnt happening, I can understand that, the prospect of losing the person you have been married to for 37 years cant be nice.

Its kind of confusing at the minute if he hasn't got rid of the pneumonia, if he is having recurring infections or if this is just the normal course of copd getting worse.

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harry replied on 04-17-2011 9:19 PM

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64, 65 is slug ho ho....... x ray showing pneumonia shadow....can clear....and did dissappear, so don't be too shocked, has he not had diagnosis for ...shot lung.......?..wherabouts are you in the u.K or up north ?

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rita replied on 04-17-2011 9:19 PM

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Hi Allison

Poor you and poor Dad too.  Mine suffered from it too but luckily he had retired and was in mid 80's when died after a long spell in hospital.  To this day I amstill  not sure if it was the copd or one of his other ailments - he'd had rheumatic fever as a child; had a pacemaker; and had what may have been a liver disorder as well as copd.  Unfortunately 11 years ago he didn't have the same medication or oxygen that we  get today and in comparison it seems like the dark ages then!!

Pneumonia takes an awful long time to get over as many on here will tell you.  Make an appointment to talk to the doctors at the hospital about his condition and please contact the helpline here on Monday as they will give you a more understandable version of his prognosis.  Keep a notepad and write down your questions and tick them off when you get replies you can understand.  Are there other members of the family as you all need to know about his condition to be able to help and support each other and Dad.  Chins up

Please do come and rant as much as you want Allison it's what we are here for and if we can help in any other way .............................  Keep us posted and let us know how you get on

hugs for now  rita

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Wheezyrie replied on 04-17-2011 9:22 PM

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Awww, I am sorry & feel for you all. I would ring the fantastic helpline on Monday when they open, they will help you so much. Sounds like your Mum is protecting herself from facing up to it all. Your closeness will help you but do you have someone to lean on? Keeping you in my thoughts & stay in touch. People here understand.

Wheezyrie

xxxx

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harry replied on 04-17-2011 9:22 PM

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allison, slug had last rites in hospital10 years ago so fingers are still crossed  that he might reach 65

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harry replied on 04-17-2011 9:30 PM

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sorry...it was 2005...time flies.......but be positive...too much negative vibes is not a good plan....shock ..yis ..but...not just downhill, can still make good future...my wold caved in but new doors open...here I am...luddite.com and twitter etc etc etc.....new extended friends etc blah blah...

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Allison replied on 04-17-2011 9:35 PM

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impecunious harry:

64, 65 is slug ho ho....... x ray showing pneumonia shadow....can clear....and did dissappear, so don't be too shocked, has he not had diagnosis for ...shot lung.......?..wherabouts are you in the u.K or up north ?

erm, shot lung... as in the xray there isnt a lot of it left, the consultant said that what is dead lung wont ever come bk  Im in south lincolnshire, land of the potatoes and Brussels growing depends where u are if im north of u lol

Thank you for all your kind words, i have a husband to be... but as lovely as he is, he doesnt know what to do or say (also a smoker, so if I moan and rant too much he thinks im ranting at him lol) I also have 2 lovely little girls, 6 and 5, that adore their grandad to bits.

I know its part of life that death comes... but i really want my dad to be around for many many more years to come, but the way he is at the minute I cant see it, heres hoping its just a glitch!!

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Allison replied on 04-17-2011 9:38 PM

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I know what you mean, my dad told my mum yesterday that he wishes he wasnt here anymore, its just heart breaking to hear that from your own dad. He is on facebook, but he has been so ill of late he hasnt even had the energy (or inclination) to switch the laptop on.

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harry replied on 04-17-2011 9:45 PM

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bin there times....yo yo...

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harry replied on 04-17-2011 9:46 PM

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has he ever had steroid tabs do you know ?

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Allison replied on 04-17-2011 9:51 PM

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He had them when he was admitted mid march and when we went to see him this afternoon he said he had some today. The consultant mentioned the poss use of steroids, but wanted to check bloods first before he gave the go ahead. Regularly he uses red inhaler morning and night, a Grey one at lunch. Codine for chest pains (not heart probs, this has been checked)

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Allison replied on 04-17-2011 9:52 PM

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oh he also got a neb inhaler if needed.

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harry replied on 04-17-2011 10:03 PM

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sounds same as my meds...just didn't know if they had got that far along with prescribing the sort of bog standard type of stuff or just being looked into stage.....but exacerbations will be quite common with floppy stuff, hopefully like me he will get enough strength back to laugh about it like me....only not like me if you know what I mean, cos I'm not a good patient.......ho ho

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Allison replied on 04-17-2011 10:27 PM

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it just seems to have been such a long exacerbation.. that its kind of getting hard to tell if it is just that or his copd reaching nearer the end. i very much hope that i will look back in a few months at this post and he be better and the happy dad i miss. He isnt a great patient... doesnt like putting on people and very independant!!

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Ian replied on 04-17-2011 10:33 PM

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Hi, Allison not many of us make good patients, shows there is life in the old dog yet which is not a bad sign

Ian

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Allison replied on 04-17-2011 10:36 PM

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Ian:

Hi, Allison not many of us make good patients, shows there is life in the old dog yet which is not a bad sign

Ian

 

i didnt think of it that way..... good point!!

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harry replied on 04-17-2011 10:39 PM

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no no sounds like a load of us guys and gals......tell him to get on here...with a load of moaners and giving the moderators a hard time...while hes sat on his arse and feeling thingy..we' ll soon have him making you a cup of tea...i've been end stage  don't run stage and virtual bard /poet/ cartoon/music/  you name it... even crawling to watch out for brian the marathon snail and red ballons thingies..end stage the worlds a stage...........all sorts.....ho ho........whereabouts are you... breath easy region

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ingrid replied on 04-17-2011 11:09 PM

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Hi Allison, you have come to the right place here, and hopefully you will get your dad here soon. Yes, the helpline will help you no end, dont be afraid to phone them. I am 63 too and last winter I was really bad with one infection after another, lasting around 5 months in total. I was in a bad way physically and mentally, but I got through it, mainly with the help of my friends on here...and medication of course lol. Then I went to pulmonary rehab, which was very enlightening and very helpful...ask about that in the near future. I sort of hibernated this winter, afraid of catching something, but hey it caught me a couple of weeks ago when i had a hospital admission, but I am on the up again, slowly and surely. So you see Allison its a roller coaster ride, but a positive attitude helps enormously.I hope the consultant will get things sorted and help make things easier for your dear dad and in the mean time, you need to stay positive too and look after yourself. If you want to rant or talk, we are all here for each other. You and your family are in my thoughts. Keep in touch (((((((((((hugs))))))))))

ingrid

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harry replied on 04-17-2011 11:23 PM

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dear Ingrid you put it so well.....well done

xxxxx

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Allison replied on 04-19-2011 7:48 PM

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Thank you guys for your feedback and kind words. My dad is still in hospital, apparently he has got another infection  will update you all soon and when he gets out I will get him sorted on here!! 

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harry replied on 04-19-2011 8:17 PM

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Sorry to hear of another infecion sneaking in, it happens sometimes, another lot sneak in when immune defences are fighting on another front.....could mean a different antibio weapon is used to clobber that one...slugs got the tee shirt and medals ho ho

I for one would be overjoyed to see him posting here Allison, brilliant catch you laters and don't forget this is a chat support forum too, so you don't have to feel as an outsider chatting about your own daily thingies.............. as and when you wish to ...so you don't have to wait till he gets out, so to speak, it all helps others going thro' similar thingies

xxx

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ingrid replied on 04-19-2011 9:01 PM

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Hi Allison, your dad is in the best place to get sorted out, as Harry says, the immune system is fighting all out and other infections sneak in.We are all thinking of you and your family, hope it wont be too long till your dad is home again.

Best wishes

ingrid xx

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Allison replied on 05-02-2011 10:00 PM

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Quick update, my dad is still in hospital, just over two wks at the min!! he got another infection (bacterial) which with the blood counters is getting better, but they have now picked another infection, this time fungal, which they have started treatment on today. There is a slight poss he might be coming out tomorrow, but we will see. Does anyone here use oxygen therapy?  Just was wondering at what point home oxygen is the way to go, the hospital have dismissed this, although he is using there. There argument is that his o2 rate is staying stable, but my argument is that surely they aren't getting a true picture of what is going to happen at home, with no o2 available. I dont mind if he doesnt have it at home, but i am concerned that when home he will not cope.

How is everyone doing? xxx

p.s - hijacked his laptop earlier and signed him up on here, so hoping when he gets out he'll be along to say ello to you all! :)

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rita replied on 05-02-2011 10:41 PM

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Hi Allison

You sound a lot chirpier! and if Dad is coming out tomorrow, all well and good.  If his 02 is stable he should be ok at home.  I sometimes think we are hooked up when we go into hospital and they forget to unhook us!  and relatives wonder what's going to happen.  My dad was hospitalised a few times although not for as long as yours has been and it was only in his last year he had a tank of oxygen at home but only used it a couple of times.  Wish I had known more about it at the time as I would have insisted he used it properly.

You could ask what the procedure is when he gets home; when is he seen again; what if he needs 02; what meds will he have and what they do for him?;  What about gentle exercise?

My sons took a decision to make my house more habitable(bless them!) so hoovered everywhere including under the beds, dusted everywhere using damp wipes and no smoking signs in the windows! and then got me a cleaner through social services.  Brill.........(Don't forget Mum will need some support/education too)

Might there be a Breathe Easy group in your vicinity?  The people on the helpline would advise you then Mum and Dad could go together when he is infection free.

Glad you have signed him up - be great to hear from him, meantime love to you all

rita  

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harry replied on 05-02-2011 10:56 PM

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Hi Allison,

You are doing exactly right thing, I would advise getting a log book/diary to record things that you might not get your head round at moment etc.  but it might be useful to know for future ref.  things like the actual name of the fungal/flora infection and anti bios used ....likewise the o2 levels at rest and after exertion...they call that desaturation...could be that he needs ambulatory o2, which have to be properly assessed once your dad can walk around....we are here to support you and your dad Allison

best wishes

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ingrid replied on 05-02-2011 11:04 PM

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Hi Allison, yes you do sound much better ...and ready to take control I hope your dad does get out soon, its tiring for the family running up and down to hospitals. Rita is right with her advice, ask all the questions, demand to see the doctor. As for 02, its quite usual to get it in hospital to help get you through the infection etc, but usually before discharge they wean you off it and all is well. Hopefully your dad will feel better when he is home, and ready to fight, and learn all there is to know about helping himself. Hope he decides to come and join us .In the meantime, my thoughts are with you and your family.

take care

ingrid.

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Carole G replied on 05-07-2011 12:16 AM

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Hi All,

I'm new to the site and have never "blogged" before so bear with me. My husband is presently in hospital with COPD this is his 3rd week. He was first diagnosed about 7 years ago, hasn't been able to work for around 5 years and has been on oxygen (24hrs) since that time. He's 54 years old and was a heavy smoker until the day he was diagnosed. He has a long list of medication- steroids, water tablets, morphine, anti sickness tablets the lot- you name it he takes it. The long term steroids have not only caused Type 1 Diabetes for which he is insulin dependant and Severe Osteoporosis and the pain in his hips and joints is unbearable. The nebulisers cause him to have the shakes, so much that he cannot hold a cup now without spilling it. He has been fortunate to attend Pulmonary Rehab for the past 5 years twice a week which has helped him no end., but recently his condition has deteriorated so much that he cannot walk anywhere, if he gets off his chair he can hardly walk unaided his appetite is poor, but he is quite a good build so he looks well. I always provide him with good healthy nutritious food, but I cannot remember the last time that he ate a meal- he has only eaten fruit, jelly and toast for the past few weeks. He was admitted into hospital a couple of weeks ago with low potasium, exacerbation episode and 5 days ago the Doctors started him on 2 different types of antibiotics to treat a chest infection. He also has a heart condition from having several operations as a child to treat a hole in the heart.He was spent the last 7 years in and out of hospital, so we know the score, however this time feels different he has continuous chest pain and cannot move an inch without getting really breathless, he can hardly string a sentence together, he is conscious but has broken sleep and experiences muscle jerks and spasms. Unfortunately, I have browsed this site and have been reading about caring for patients with COPD at end of life and every symptom he has is on there. It's really difficult as I cannot discuss this with anyone, I have a Son who is 22 years old and idolises his Dad but has made it clear he doesn't want to ask questions and I don't want to burden anyone else with my worries. I work full time at the hospital so have decided to make an appointment to speak with his Consultant on Monday, but would love to hear from anyone who may be in a similar situation to me. Thank you so much for listening to me- I feel a little better now I've finally found people who understands this awful situation that we all have to live with.

Carole

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Arlene replied on 05-07-2011 1:10 AM

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Hello Carole,

I am new this as well, could you tell me where you found the information about end of life care as I have looked about on here and cannot find anything about end of life care. I am trying to find information for a friend who has asked me about a similar situation, I do hope the consultant will be able to offer you better advice than I can, but the helpline have always been there for helping carers and patients, when needs be in these situations.

Best wishes

Arlene

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Carole G replied on 05-07-2011 8:35 AM

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Hi Arlene,

Thanks for your reply, I've just had another sleeplessness night worrying so thought I'd do a bit of research for questions that I need to ask- some people don't want to ask questions and would rather not know, but I do as there are things that need sorting out like should I stop work now to look after him (not that we can afford it but it's the right thing to do). I found out the information by going on the "your lungs" link at the top of the page then "coping with the final stages of chronic lung disease" link  / Physical Care / How can you tell when someone with chronic lung diease is entering the last phase of life. I have also read other messages here of people who are categorising themselves into grades of COPD, I haven't heard this before so that is a good starting point for me to ask. To be honest until I logged on to this website last night I thought it was just another chest infection / exacerbation but I have worried myself with too much information - ignorance is bliss, but I'm not that type of person unfortunately. Is your friend who is in a similar situation the person with COPD or the spouse? I feel so guilty sometimes as I feel sorry for myself being in this situation and although I work and am well and active (I'm a young 50)  I also have no quality of life either - it's dismal, then I think of my poor husband and how he must feel, and he never complains or moans about it, he just feels guilty. I will try and contact the helpline too although 10 - 6 Monday to Friday isn't a great time for me as I am at work then.

Take Care

Carole

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David replied on 05-07-2011 10:48 AM

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Carole and Arlene

i get some of my info about COPD from this site

http://www.patient.co.uk/health/Chronic-Obstructive-Pulmonary-Disease.htm

Yes too much info can cause panic worry, Ignorance is better at some times. best if you make the time to call the helpline.

they can offer much better info and also help with questions, you should also look into the breath easy group its for every one there should be one in your area.

David

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ingrid replied on 05-07-2011 11:25 AM

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Hi Carole and Arlene, you have come to the best place for talking and releasing your worries. I can only endorese that the helpline is the place to go for help and advice. We on here all have lung problems or are carers, so we do understand what you are going through. My heart goes out to you and your families. If you want to rant, or ask questions, someone will be along to answer as best they can, but most of all we are all here to give you support.Surely if you explain to your work that you must make that phone call on monday ,they will understand. Make it a priority!!

Please keep in touch, we are here for you, and in our thoughts.

ingrid.

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Lorien replied on 05-07-2011 1:01 PM

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Hi Carole and Arlene,

Welcome to the group.  My heart goes out to you both as you seem to be coping alone. 

My mother died of this but I was one of eight siblings to help and support her.  I now realise just how little information we were given though, and how vague and inaccurate her medical team was.  They must have known how close to the end she was but they didn't tell us.  Sometimes I think they were trying to tell us but were too tactful.  I wish I had known. 

Now that I've got it, I've found a lot of information about it and I really wish I'd known when she was in this situation, I could have helped so much more.

Best wishes to you both.

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Carole G replied on 05-07-2011 1:16 PM

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Hi all,

Thank you for your kind words of wisdom and support. I have just gone on to the website that David advised and it is very informative, although after reading their forum and this I have mixed feelings about sharing my thoughts and worries, it's not something that I do naturally and it has certainly affected me. Not a bad thing really, but when you need to stay strong for everyone around you there are some things that you try not to think about. We have all had a very good positive mental attitude for such a long time to try to ensure that he does not get depressed (although he is very sad and low at times, as we all are).

I have got some more information now and a list of questions that I shall be asking - just hope that I can cope with the information I get in return.

Again many thanks for taking the time to write - it is very much appreciated.

Carole

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David replied on 05-07-2011 2:27 PM

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Carole G

Thats what this site and forum is for, have a rant, a laugh do what you want, just join in, you don't need to share what you feel if you don't want to, no one on this forum will take that to heart.every one here for moral support and cheering up, take a look at the funny stuff thread and please feel free to join in on the word assocation game its just fun, the "Girls" will welcome you especilly,

you dont even need to know how to spel rite ether.

you can catch somebody on line virtuly round the clock we also chat at

http://tinychat.com/blf

feel free again to join us most folk use it at night for a bleather.

David

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Allison replied on 05-07-2011 8:27 PM

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sending you really really big hugs, Its so hard isnt it 

Im personally going with the route of id rather know than not know, although i really can understand why people decide they would rather not know. As you have prob read from the above posts, my dad isnt so good at the min, but hoping its just a little set back in the grand scheme of things and stops getting these silly infections as they keep knocking him sidewards!

sending u my love

allison xx

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David replied on 05-07-2011 9:09 PM

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Ally

with regard to COPD please contact the helpline MONDAY they are the best in support and answers. we can only point to sites that give info not answers ( THAT YOU NEED) don't worry about little set backs they can come and go,

as for BUGS ( kill the blighters shouldn't be allowed ) But i'am afraid they, are we ALL get them in some form or another from time to time,  just don't reconise them till it's later.

Please KEEP in contact we offer you anything we can do.take a look at this site for info about COPD

http://www.patient.co.uk/DisplayConcepts.asp?WordId=copd&MaxResults=50&fromsearchbox=1

But please please contact the wonderful team on the helpline they are there for YOU as well as us.

iam sure you will get the same from the other guy's and gal's online

David