THE UPPER PART OF THIS PAGE IS DEVOTED TO LETTERS SENT BY SITE VISITORS TO DAVID AND TERRY AND THEIR RESPONSES. LETTERS AND RESPONSES WILL BE PUBLISHED ONLY WITH THE APPROVAL OF BOTH WRITER AND RESPONDENT.
THE LOWER PART OF THIS PAGE IS DEVOTED TO LETTERS TO JOHN KIRTLEY AND HIS RESPONSES. THIS IS BY MUTUAL CONSENT & ONLY LETTERS WILL BE PUBLISHED WITH YOUR APPROVAL
The following article is written by the daughter of the late Paddy Joyce who died of COPD on 18th June 2006. It is written in the hope that it may help anyone who is caring from a loved one suffering from COPD and also includes the emails to John Kirtley as Dad’s condition was worsening.
The job of caring for someone with this dreadful disease is both tiring and time consuming and it also consumes the whole family. My mother Bridie was the main carer for my Dad and as his illness progressed over a 4 year period, it became a full time job.
It all began when Dad retired at the age of 65 although for the last year of his working life he was having frequent bouts of sickness due to his worsening condition. As a crane driver, he would have to climb countless steps to reach his drivers cab, sometimes 300 feet in the air. That was quite a feat for an able bodied person never mind a COPD sufferer! He was already breathless before he climbed the steps and obviously became worse the higher he got. He began to take more and more time off work and eventually retired at 65. This was something of a milestone for Dad as he kind of gave up and started suffering from Depression. Not having his job to focus on meant that he turned his attention to his failing mind and body, something which I believe is quite common and the two are certainly linked.
As a smoker of over 50 years Dad enjoyed his pint and fag in the pub with his mates and he was relatively illness free over his long working life. However, he then started to become more and more breathless and the amount of steps he could take got smaller and smaller with him having to rest more frequently. I remember a time when I asked him to help me carry a double mattress up the stairs in the house. He looked horrified at the request and I said “Common Dad you can do it I’m sure you can”. However, when we reached the top of the stairs he was completely gasping for air and needed to take a puff on his inhaler bless him. I had no idea at this point what was the matter and thought he may have been acting up for a bit of attention. He obviously wasn’t. It was this simple task that made me realise that something was very wrong with Dad’s lungs. During this time, Dad was having blood tests and bone density tests and a lot more besides. It took four years before we knew exactly what was wrong with him, which was very frustrating indeed for my Mum and the rest of the family. We got the diagnosis earlier this year during one of his stays in hospital. However, to actually have a name for this illness meant at least that I could research his illness on the internet to know how best to help him. It was during this research that I came across John Kirtley’s excellent website. I was thrilled that there was someone out there that both knew how Dad felt and also who was a real fighter, something my Dad wasn’t unfortunately. I emailed John and got an immediate response and our email bond was secured. Even looking at the pictures of John in his buggy and his oxygen reminds me so much of how Dad looked.
I now insert the emails that I wrote to John and how he responded so supportively.
My first email to John dated 23rd May 2006
Hello John,
I just want to say that I'm so glad I found your brilliant website as my father is suffering from this condition. He is 69 and is not at all well. He is currently in hospital with another chest infection, his 3rd in 8 weeks.
What really frustrates me is that no one has sat down and properly explained what we can expect from this awful disease (that is, no one from a medical background!). I find this really frustrating and so does my mum who is my dad's carer. So when I found your site I was thrilled as you explain everything so well and clearly.
We are currently thinking that we may get him the MOT he needs with BUPA as the NHS are doing their best but Mum and Dad have the funds to pay for better treatment and hopefully, better guidance. We're also thinking that we'd like him to have a nebuliser at home as it works so well in hospital but we are being put off by the hospital and I don't know why. Probably the cost involved!!!
Anyway John, thanks for your brilliant input which I will be keeping an eye on in your diary.
Yours thankfully,
Gerri Joyce
John's response dated 30th May 2006
Hi Gerri,
I apologise for not getting back to you sooner but I have been on vacation.
I'm sorry to hear about your Dad. There is a debate amongst GPs about the usefulness of nebulisers rather than just multi-bursts from an inhaler. However, if he is seen to benefit from nebulisers or that he feels that he does, the GP should prescribe it for him. If either the hospital or GP refuses, your Dad has the right complain and someone should ring PALS on his behalf both at your hospital and your local Primary Care Trust about this problem. You are also entitled to change your GP or seek a second opinion. The medicines I describe are the best ones currently available. Do not let the medical profession put you off? I would be dead by now if I hadn't demanded this and that. I had an MOT from BUPA but they will not give you specific treatment information on COPD. However, they will be able to test his heart and see if he any other medical conditions.
The important thing is to keep him out of hospital and away from infections of any sort and that generally means other people. He needs recovery time and then gentle exercise & probably oxygen. Otherwise constant hospital admissions or infections will only permanently affect his condition.
To find out how to complain read my FINDING OUT page.
Thank you for the complements and do get back to me if you feel like it.
Best wishes
John
Email dated:
Hello again John,
Thank you for your previous response and your offer to contact again if need be.
Well unfortunately my poor old Dad is still in hospital (now 4th week) and has caught the dreaded infection you stated. He has bugs in his lungs which have now colonised there and is heart and kidneys are getting worse. The doctor said he probably only has weeks to go. I'm now over the shock of this news and now really want to get him home or into a hospice which is much nicer than the wretched Lewisham hospital.
Do you have any info or tips on how this is best achieved if he's allowed out. It may be that he will not be allowed out if the infection is not cleared up. He is currently on a super high dosage of antibiotics.
I cannot bear the thought that my Dad may die in that awful place!!!!
Yours hopefully
Gerri Joyce
Hi Gerri
Thank you for writing. I'm extremely sorry that your Dad's condition has worsened. They may wish to keep him in hospital because of the possible need to use a non-invasive respiratory machine to maintain his breathing. However, his heart and kidneys present different problems, and the latter might again involve dialysis.
Central to your problem in the first instance is his state of mind. Assuming he is lucid, then he could state that he no longer wishes to receive hospital treatment and wishes only to be treated at home. This may of course hasten his death but he might accept that. The next of kin, presumably you, will also be involved in this decision. If he is to go home is there anybody who can devote themselves full-time to his care? Hospitals often have an Access Team for discharging patients and they can help with organising some home care for him. His GP may not have the time to cope. Explore with your GP the availability of home care assistance in his area. They will not allow him to be discharged unless there is somebody to care for him 24/7.
I hope that this helps and please let me know the outcome. Personally I haven't encountered this problem except with my father, who refused all treatment for his cancer and died in a nursing home. I shall be writing a piece on Living Wills soon which will stress their importance with regard to how you wish to be treated when reaching end-stage emphysema.
However, if he remains in hospital he may recover from the infection and be discharged anyway. There is no way anybody can accurately predict the death of a COPD patient, even within 2 weeks of his or her subsequent death.
Best wishes to you both
John
Email to John with the bad news dated 21st June 2006
Good Morning John,
I am sadly reporting the passing of my father Patrick.
He passed away on Sunday morning at 10am. We weren't able to rouse him from his sleep and I wonder whether he did suffer a stroke on Saturday morning as you state in your last email. The reason I say this is because his speech was slurred and he didn't open his eyes when sitting in his chair in the garden. He then rallied and took some liquid and a little food. We also had the discussion about him not being scared and we all gave our permission to let him go.
On Sunday morning we could not wake him and he passed away peacefully with all of us around him. God Bless Him.
I am now wearing his watch and it's keeping me close to him for now which is lovely.
Thank you so much for all your help John. You have been an inspiration to me and it's fantastic the way in which you choose to live life with your condition. I only wish my Dad had this fight in him.
Still we are planning a big funeral for him with horses (which he would love!) and we'll be celebrating his life next Weds at 1.30pm.
Thanks again John and I'll never forget you even though we've never met.
Also, in the future, if I can be of any help on your website to other family members who will inevitably suffer the same plight, then I'll be happy to help in any way I can. It would be a tonic for me.
With much love and best wishes
Gerri
Dear Gerri
I am so sorry to hear about Patrick's passing.
My father did not have COPD but gave up on life in a nursing home. He refused to do anything at all for himself and just sat in a chair ordering people to do everything. His muscles wasted away and he stopped eating properly and suffered a stroke. But he was 87 and wanted to die, so nobody was too angry or upset about his passing. How old was Patrick?
The funeral sounds very grand! I'm sure he would have appreciated it.
I do hope that you are not too upset. You did everything you could and he wanted to die at home, and in a sense dying of a stroke is a lot better than dying of respiratory failure which can be lengthy, and painful for both patient and carers.
You could help me with the web site. I have a section on patient stories but I am about to expand it to include carers/relatives. I have received a number of letters asking where they could find help/support. So if you would like to help me and therefore carers, perhaps you could eventually send me a piece for putting on my site. Any length will do - no restrictions! If you do not want your name attached, just let me know and I will say carer from your county. The problem with including names is that the search engines will pick it up and then if you type your name into say YAHOO you will find you are mentioned! Some people don't mind, others do. I found typing my name into Yahoo and in the UK I was number 1. Well I suppose its the closest I'll get to immortality!
Thank you for your kind remarks. That helps me a lot because I'm not sure how my comments will affect people that I have not met in person.
Take care
Best wishes
John
THE FUNERAL
The funeral was a grand affair with two white horses and a carriage which my Dad would have loved. He loved his horse racing and his four legged friends were precious to him.
The church was absolutely jam packed with about 350 people which was brilliant. All these people came to say goodbye to my Dad. How impressive and lovely for all of us to see. There were 3 priests who all knew my Dad and were able to speak personally about him. We laughed a lot during the service as we were reminded of some funny tales about Mum and Dad. We also clapped at one point too as one of the priests made a joke about a mobile phone which kept ringing. Dad would have loved it. The only other time I recall clapping at a funeral was of the late Princess Diana!!
It has now been 6 weeks since Dad’s passing and things are a little easier. I always dreaded how I would feel when he died but you really do cope with it and then have your own private moments of sadness and tears. It really is not as bad as I thought it would be. This was a bit of a shock to me as I thought I would be totally consumed by grief. I wasn’t. It was a fear that I and most of my family had. I had a fantastic relationship with my father and would always make him laugh, even near the end. I also said everything I wanted to say to him and told him often how much I loved him.
Finally, we’re off to St Ives in Cornwall on Saturday a place which Dad loved so we expect that we’ll feel sad he’s not with us but we also think that this break will be very much needed for the family. I also firmly believe that Dad is around me a lot of the time and I’m sure we’ll get some signs whilst we’re on holiday.
With love to whoever reads this article in the hope that it may help in some small way!!
Please feel free to email me if you are suffering and want a fellow carer to speak to, I’d be happy to!! Gerri
EDITORS NOTE - I DID NOT ENCOURAGE GERRI TO DO THIS. SHE ASKED ME TO PUBLISH IT.
Here is a poem from a young lady age 13 and called Laurie. She lives in Northern Ireland and her Dad has severe emphysema (COPD). It is a fitting tribute to his battle with the disease and a reminder to us all of how this illness affects those around us, including our children.
My Wish
Life is full of wishes,
Lots are never heard,
I have one in mind,
That speaks a thousand words.
I love someone, very much,
He’s my very special Dad,
He’s unlike no other.
My dad has emphysema,
It makes him tired and sore,
It’s also hard to breathe.
It really makes me sad,
How hard he works all day,
It makes me sad to watch,
How painful, is his working day.
My Dad is such a worker,
He never ever stops,
It makes him such a winner,
I love him so much.
I hate to see him sore.
My Dad has emphysema,
It's really hard to tell,
He works so hard and never stops,
That's why I love him so.
My Dad is like the sea,
Alive and full of action,
Inside I think he’s, like an ocean,
Wild and fun and free.
I watch my Dad asleep at night,
He snuffles and he snuffles,
He seems to know I'm there,
I laugh as he wakens,
And sneak out of the room.
His big bear hugs are nice,
He keeps me safe and warm,
I wish I could do the same for him,
And help him along.
Laurie - for her Dad