My mom has end stage copd

[Phyllis1982]

My mom has end stage copd severely low oxygen levels 70's most of the time drs give her 3 months left to live a nd I'm looking for something to help her o2 levels and be able to breathe better!

[Phil40]

Hi Phylis, I am Phil and look after my Mum with end stage COPD.

Does your Mum does have oxygen and the full range of meds possible to make things easier?

Is she under a Specialist Nurse team or Community Matron or something like that?

Phil

[Phyllis1982 in reply to Phil40]

She's on 8 liters of oxygen 5 mg of prednsone 2 inhalers and a nebulizer and her oxygen was staying at 80-82 for months but now it's staying in 70s Medicare keeps making palitive care leave they said there's no nursing need which isn't true at all

[hypercat54]

Hi I am sorry to hear about your mum. As she has been given a terminal diagnosis she ought to be receiving palliative care. This means she should have a group of professionals looking after her and making her as comfortable as possible. This is patient centred. If this isn't happening get her doctor to sort it. x

[Phyllis1982 in reply to hypercat54]

Her Dr keeps referring her to palitive care but Medicare keeps making them leave because they said there's no skilled nursing need which is very untrue..They just don't want to pay for it..

[Phil40]

Do you mind me asking which country you are in? I am thinking USA?

[Phyllis1982 in reply to Phil40]

Yes USA

[Phil40]

Hi Phyliss,

It makes me appreciate the health services we still have here in the U.K. when I read that they don’t want to pay for helping your Mum.

My Mum is on a few more meds but not a huge amount of difference to what your Mum is on; she has Lorazepam a benzo that relaxes her to sleep and if she’s anxious and a morphine based solution that is supposed to help her breathe when taken in small doses.

She has diabetes also so there are a few meds for that but the diabetes has never had a huge impact on her.

I would think that anyone reaching the end of life should receive some palliative care, although to be honest because I am looking after Mum no one is ever in a hurry to help.

We have been fortunate to have a really pushy nurse helping get things done but she is leaving next month so I expect it will be me annoying doctors again instead of her.

I hope that you are looking after yourself as well. It is so important and I am good at giving that advice but not so good at following it.

This is the hardest thing I have ever done and I get so depressed sometimes especially when Mum has a flare up, as she did a few weeks ago. The stress and worries keep me awake and the other day I looked in the mirror (always a mistake) and looked old and tired.

My wife is really supportive but no one else in my family helps at all really and my brother, well I don’t think I will have much to do with him once Mum is not here to worry about us getting on. He is a strange selfish person.

People on this forum are really supportive and I don’t feel so alone with it all. There is always good advice and kind words.

Is there any sort of support groups or anything else you can access in the States that doesn’t involve you paying?

My Mum has been feeling a bit better the last few days and I have been able to relax a bit this weekend but I wonder how many more flare ups she will be able to fight as she gets weaker every time.

I said to my daughter the other day that there’s no happy ending coming; even when Mum is a bit better I know it’s only a matter of time. And then I feel guilty for thinking that too.

Best regards

Phil

[Phyllis1982 in reply to Phil40]

Yes it is very hard..the only other help we can get is hospice and I feel like we will be giving up and they don't give antibiotic or anything if she gets a infection..And she cant go to drs..it's sad it she's struggling to breathe alot and I'm the only one out of 6 kids that is here for her so I know how you feel there...i took her In my home a year in a half ago and me and my husband take care of her I'm so glad she's with us and not alone...

[Phil40 in reply to Phyllis1982]

Hi,

Yes it is heart breaking watching Mum struggle to breathe and wishing I could do something more to help when I cannot.

You and you husband are good looking after your Mum. People say to me that I am good doing what I am but I don’t really ever think so. I am just glad, like you that I am there. Also like you, with no other family interested. I do not know how they can be so selfish.

I hope your Mum feels as well as possible and you and your husband take care of yourselves too

Phil x

[Phyllis1982 in reply to Phil40]

Thank you we can only do the best we can God is in full control and Prayers have helped my mom alot or she wouldn't be here they almost put her on life support back in August but she refused..

[gingermusic]

I would assume that your mum is on oxygen with levels that low in which case it should be higher than it is. I am also end stage but on oxygen 24/7 and I am able to still walk around and do certain things within my home, and go shopping weekly.

[Phyllis1982]

Yes she's on 8 liters 24-7 And her o2 still running s low

[Phil40]

Oh, I just had a thought. Mum had all the tubing and things changed on her oxygen concentrator recently and her oxygen saturation has consistently been higher since then.

It really seems too much of a coincidence not to be connected and when we talked about it she had had the same over length tubes and fire breaks in for years!

Phil

[skischool]

Phylis,Hopefully someone from the states will come on later in the day,we can give advice from the UK but only your fellow members in the states will know the complex nature of Medicare and who dictates and funds the level of care most appropriate for your mum,in our system there is clearly a nursing need here in terms of palliative care but how you can enforce Medicare to provide this is beyond our remit.i do hope you manage to get the care that your mum needs and some good advice re your specific health system..........kindest regards Skis and Scruffy x