COPD worsening - what's next?

[Muuuuuuuum]

Saw mil over Christmas - last saw her in August and it was shocking to see how much she had deteriorated.

She has lost weight, her face looked grey, she kept nodding off in her chair but waking up gasping for breath. We took her out for lunch and she needed 5inutes to gather herself and catch breath after walking 10m to car. Her legs are also swelling up. Scans have ruled out clots so probably fluid retention?

She is very much in denial, just a temporary blip, needs meds adjusting etc but I wonder how long she can viably manage to live alone?

DH is an only child, we are 2+ hours away and have DC with additional needs so wondering if anyone can offer advice on what might happen next, how we can plan to support her ahead of any sudden crisis. Mil minimises on phone, but seeing her in person it was clear she is very frail and unwell.

Has she seen anyone medically recently? Leg swelling can be heart related she may need some further investigations.

GP sent her to hospital for scan to rule out DVT / clot as cause as only one leg (but other one is also swelling now she thinks). This was week before Christmas. Scan showed no clots so she is awaiting another GP appt to see what is next. Should I suggest she ask about heart? Really hard to talk to her about it as she minimises and is, I think, in denial. She still hasn't stopped smoking!

My Dad had stage 4 COPD and this is very scary to hear. Sounds like is has/is moved to stage 4 herself. ( not a doctor but sounds similar to my dads)

Swelling is a sign o fluid retention which can mean infection, either way it’s not a good sign. Also she possibly needs oxygen 24/7 now. I had to fight for it for my father but it’s helped him immensely.

Maybe seek a home help or social worker who can help.

Thank you for sharing (and sorry about your dad).

DH thinks she won't want oxygen as too image conscious but she can scarcely walk across the room.

She has a cleaner and we shop online for her, but her bathroom is upstairs and they are steep stairs - I worry she will have a fall.

Wondering if we should investigate supported living options if her own home will become impractical but she would hate to move I think. Or do we need to be looking at nursing homes?

So sad as I can see where this heading and don't know what we can do to help her, especially if she won't accept how bad / serious it is.

The thing is denial is protective. If it helps her cope and makes her circumstances feel bearable then I would be careful about not undermining it.

Western medicine has this obsession with making sure patients know their expiry date, but if that causes so much distress it destroys the person's ability to live what are we trying to achieve? Who and how does that help?

Rather than trying to get her to "accept" it, think about how you can work with her preferred coping strategy of denial. E.g. don't talk in terms of making permanent changes due to deterioration/progression, talk about things that could help her temporarily while she's going through this blip.

Before you move to assisted living, try a chair lift. I have copd (normally pretty well controlled, but always there) and had one fitted about a year ago. It been a god send. I no longer limit my trips to the bathroom. It's slow, yes, but I've learned not to wait until I'm desperate for the toilet before I go.

I also have a shower chair, so I can sit instead of standing. A walker, that makes me feel more secure while walking. I guess the next thing is a mobility scooter. But that's ok, compared to.assisted living.

Having said that, I live with my DD and her partner, so I do get extra help when I need it

Your posts are both so useful User, thank you.

Stair lift is a good idea and will suggest to DH we adopt your approach in terms of talking to her. I guess selfishly we want to plan so we have some control of the situation but it isn't about us and we have to go at her pace.

She needs oxygen. I’m surprised she doesn’t even have it already. Does she not see any respiratory nurses?

A family member of mine has oxygen 24/7. They have a portable one for when they leave the house and they use a mobility scooter. Please, please try and get her oxygen.

They may be reluctant to prescribe oxygen if she smokes. Does she have a lung care nurse who can visit her. Social services can carry out a care needs assessment to help her get some help. Would she agree to live downstairs and have carers in. She may be developing heart failure which a heart scan and xray would diagnose .

Another one saying get oxygen sorted. It made so much difference to my mum when she started using it. She has a unit that she uses overnight and in the day if needed and portable canisters to take out with her. She also has a blue badge so we can park closer to the shop entrance now. Although she does tend to go in a wheelchair now.

Thanks for all the experiences and ideas.

MiL has no lung care or respiratory nurse, or social service involvement at the moment. That said, she is currently in hospital. GP did home visit as leg still swollen and her blood oxygen was 84 so he called ambulance.

She has had loads of tests, scans etc and is on oxygen in hospital. I am really relieved as her condition has now been noticed by health care professionals and she is in the system, if you know what I mean.

She has no discharge date yet but we think she will be sent home with oxygen. She says it is making no difference but I hope she will find everything less of a struggle with it.