Don’t know where to turn

[2703]

My dad has been diagnosed with terminal lung cancer he’s 90, he just sits in a chair all day because he can’t breathe but no one is helping us, we’ve asked for oxygen but they have said it won’t make any difference, surely this will help him breathe better. We don’t know where to turn it’s heartbreaking watching him struggle for breath.

[hypercat54]

Hi I am so sorry to hear about your poor father and this must be very distressing for all of you. I will say though that oxygen isn't given to help with breathing, though this could be a side effect, but to protect his other organs if his sats (oxygen level) is too low. If for example he is a carbon dioxide retainer which is why he is breathless then oxygen would only do harm.

As he has received a terminal diagnosis he should be receiving palliative care from a multi disiplinary team which is patient led with the aim of making him more comfortable. If he is not having this then speak to his consultant or doctor.

My father reached the age of 89 and decided although he wasn't a cancer sufferer he had had enough and just wanted to go. This was extremely heartbreaking but all you can do is respect his wishes and be there for him. Spend as much time with him as you can and talk about good memories and treasure his company.

I wish you and all of you all the best. x

[2703 in reply to hypercat54]

Thank you so much for your kind words we have a consultant appointment on Wednesday so I will have a word with the doctor. Thank you x

[Denzie in reply to hypercat54]

If he’s very uncomfortable take him to the ED and insist he be give oxygen therapy.

[hypercat54 in reply to Denzie]

He would only be given oxygen if his stats were regularly around the late 80's or lower and stayed that way for a while. Many people are carbon dioxide retainers which means they have enough oxygen but air is getting trapped in the lungs. To give someone like this oxygen is counter productive as it would only make the breathlessness worse. The treatment in this case would be to teach the patient breathing exercises to release some of this trapped gas.

Like I said oxygen is never given for the purpose of better breathing, but to protect the other organs from failure. You need to read up on this so you can understand what I am saying. I suffer from copd and know what I am talking about. Your advice is reckless and ill informed.

[Denzie in reply to hypercat54]

Thank you. Do you have a resource you would recommend I can use to educate myself? I do not want to share dangerous info. When I went I was given O2 but I didn’t understand that it was because my PO2 level was so low. First time I don’t remember a whole lot after I heard that I had a large mass and the second when I had large pleural and pericardial effusion. Had difficulty breathing both times.

[hypercat54 in reply to Denzie]

No I don't but just do some general reading on the use of oxygen. Stick to reputable sites though. You can always ask in the British Lung Foundation site on here as there are some on oxygen who will know more about the ins and outs than I do. x

[Denzie in reply to hypercat54]

Thanks b

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi,

I am very sorry to her about your dads diagnosis.You should have been given the number of the palliative care team to support your dad and his carers at home. If not, I suggest you phone your GP surgery and ask for the number of the practice attached district nurse. You can self refer by phone to the district nurse who is a specialist practitioner who among other things has clinical assessment skills and can act as a co-ordinator of patient care (if the answer phone comes on,leave your telephone number and ask the district nurse to call you back).

You need to say you are worried about your 90 year old father who is terminally ill at home and you would appreciate if she/he can visit him. She/he will carry out an assessment of your dads needs(including his breathing) and make referral to other colleagues in the community multidisciplinary team. For example, you said he sits in a chair all day.She/he may refer him for an occupational therapy assessment.This can result in some aids to make him more comfortable at home. He should have a pressure relieving cushion for his chair to prevent him getting for example, pressure sores.

It is a good idea for someone to be at home if the district nurse visits so that you can provide information regarding his daily needs ,for example,washing and dressing,getting to and from the toilet.If he is sitting all day he is at risk of constipation therefore the district nurse can advise him about fluids and diet. It is not clear from your post if your dad lives alone as there are services (for community alert alarms which may be available). Aged 90 and terminally ill, he should be in receipt of attendance allowance and if not his GP will be able to complete the DS1500 form(attendance allowance under special rules).

if you would like to speak to one of the nurses for advice please don't hesitate to call the Helpline Freephone: 0800 358 7200 (Option2).We are available 9.00-5.00pm Mon-Thursday(9.00am-4.00pm Friday.

Kind regards,

All the team at the Roy Castle Helpline.

[2703 in reply to RoyCastleHelpline]

Thank you for your advice, dad lives with mum who is also struggling but we are going to speak to the doctor tomorrow and arrange a home visit to see what can be done, the only problem is dad is very stubborn and says he doesn’t need any help. I go everyday and he looks so bad as he’s now not eating we have suggested bringing the bed down but he insists on struggling up the stairs, I honestly don’t know how he gets up stairs I think it’s sheer willpower. I honestly don’t think he has very long left looking at him how he’s deteriorated in the last week. I feel like running away it’s so stressful. But thank you for your advice.