COPD, dysphagia and the future

[Margie1000000000]

Hi all,

I'm new here, and the reason I joined is I'm looking in for information from people who have been in our situation.

My dad is 73 has COPD, recently diagnosed with severe dysphagia. A small growth on lung cannot be examined due to his present condition, but told it may be cancerous. His recent infections have been very severe.

Speech & language therapist and consultants state peg tube feeding is the only option available to him. He is totally against it, and continues to drink and eat, although he says he has no taste for food but knows he has to. He is constantly aspirating, and extremely short of breath. He is becoming less Mobile all the time.

We are told he will continue to get sicker and won't survive. Community nurses are referring him to palative care team to come into the home.

I am wondering how long can people survive like this, I'm a wreak, not sleeping, waiting for something to happen.

Thanks everyone, I hope you are doing well.

[raincitygirl]

Hi Margie,

Here I am on the west coast while the people who have the best knowledge to reply to you are probably asleep on the east coast or the UK

I just want to say I read your post and feel so bad for your hard situation. You have to respect your father's wishes (if he is of sound mind) yet you are the one who must deal with the fallout every day. I can't imagine that this can carry on for long - but every day must seem interminable.

Bless you - I'm looking forward to seeing others' responses. Hope you get a good sleep tonight. I'm thinking of you.

Anne G.

[Margie1000000000 in reply to raincitygirl]

Thank you Anne X

[rriddle]

In my lay experience running a PSP/CBD support group in San Francisco Bay Area, those with severe dysphagia live about 5 or 6 months after being diagnosed with severe dysphagia. The COPD just exacerbates the situation.

[Margie1000000000 in reply to rriddle]

Thank you very much for replying.

[BABALINDA in reply to rriddle]

I think you are wrong I been working we a 81 years gentlemen diagnosed we PSP 4 years ago after long time of miss diagnosed. in Nov/16 after the swollen test and he was diagnosed with dysphasia. No more food as the muscles on his neck are very weak and nothing can be done, and his wife refused the feeding tube as considering not qualify off live I carry on feeding he and a times looks if him getting better and stronger .

I think we have to take every day as it comes and understand each person is”unique “

Have a nice day

[Margie1000000000 in reply to BABALINDA]

I hope I am wrong. Absolutely each person is unique, but I need to know about the illness to be able to give him the best support I can.

[rriddle in reply to BABALINDA]

Of course each person is unique. You are writing about one gentleman you know. I am speaking about several hundred people I've seen come through our local support group, many of whom have had their diagnoses confirmed through brain donation. These are averages, of course. There are outliers (on both ends of the curve).

[cgrady1952]

I have nothing to offer other than understanding how you feel. As hard as it is and how selfish it may feel at times, you must take care of yourself.

Best wishes from California

[Margie1000000000 in reply to cgrady1952]

Thank you x

[F4rn12ley]

I think it is difficult to predict how long someone can survive if they won’t accept a feeding tube. My Mum has PSP and about 18 months ago it was suggested she may want to have one . She refused over and over again and is still alive. However she doesn’t have COPD or a tumour on her lung so those two things may impact differently. She eats puréed food and drinks very thickened fluid off a spoon to limit choking and aspirating. She has lost lafs of weight and it is now a waiting game as to what will get her. It is had to accept someone’s decision about what they will and won’t accept but you really have to respect their wishes. Love Steph

[Margie1000000000 in reply to F4rn12ley]

Thank you Steph, wishing your mum all the best too X