Where do we go from here?

[GnomeDePlume]

Up until 4 weeks ago DM(85) was doing fine. Lived alone in a bungalow with family member close by calling in regularly (most days) for general chit chat.

Then she took a fall and broke her leg requiring surgery.

In these 4 weeks DM has declined so much. Her short-term memory is shot. She has stopped eating, she still chooses food but then just pushes it around a bit without managing more than a mouthful. She still drinks water but isn't interested in any other drink (she used to be a big tea drinker).

DM is now in a ward waiting for discharge to another hospital where she will do some physiotherapy.

It all seems too little, too late. She isn't getting out of bed. Her world has shrunk from bungalow, well tended garden, clubs, to the tray over her bed.

Is there any coming back?

I'm not sure what answers I'm looking for. It all feels a bit miserable at the moment.

Thank you all.

So, did my morning call with the hospital and I think may have made some progress. I actually got to speak to a doctor! Not DM's doctor but someone who gave me time to ask my questions.

Still no results on the MRI. A note has been taken on checking they do have the LPA. A promise of sorts that a doctor will give me a call back this afternoon.

At the moment there is no plan to move DM on to somewhere else. DB had misunderstood something he was told when DM first arrived on the ward.

All fed back to DB who is slightly annoyed that I have managed to get some information albeit very little. This is typical of him. He probably thinks he should have been told first or summat.

Well done @GnomeDePlume, good start to the day!
Do you or DB have a copy of the LPA or whatever the OPG send you as the individuals named on it? If it's easy to find then you could take it with you. Just to make sure one box is ticked off that you don't don't have to rely on the ward staff to do (apologies if I'm saying something really obvious )

@purplelagoon yes, we do have our official letter from OPG. A copy was given when DM was on her previous ward but I don't know if paper records get transferred with the patient or just the electronic records.

So far the LPA hasn't really been much use. Most of the patients on DM's ward are elderly, incapacitated and don't seem to get many visitors.

This does make me wonder if the ward staff are used to just doing their own thing without reference to family members who do have more legal status than simply next of kin.

@GnomeDePlume realistically the doctors in charge of your mum's medical care will be the ones making the decisions, hopefully though with your input as her advocate. What I mean by that is the LPA for health doesn't necessarily put more on to you than you would have as "just" a next of kin. For example, if the medics do feel that she is end of life, they would make the ultimate decision re DNAR even if a family member was adamant that their loved one should get full active treatment for everything.

Good news today, DB with DM and reports that she has been awake a little and chatting albeit very tiredly.

I had a call from a doctor today who confirmed they do have the LPA and also that the MRI showed no indication of a further stroke.

Apparently the excessive sleeping can be a form of infection delirium.

So the crisis is stepping down a bit.

Thank you everyone for your support.

@purplelagoon my issue was more that until lunchtime today we weren't being told anything at all.

DM has DNAR in place which I am comfortable with. DM is 85. In my opinion, any major intervention now should only be undertaken to make DM more comfortable now.

My experience today makes me wonder if I need to be main spokesperson for DM. DB is hopeless at asking for information.

That's a few bits of good news there @GnomeDePlume . Maybe all this has come from the UTI again. They can be so debilitating. Really good to hear your mum is a little more animated.

In my opinion, yes you should. If you can speak again with the same doctor, then you've got continuity too. You could propose it that way to your brother.

DM is on the move again but this time within the hospital. Her whole bay is being swapped with a bay in another ward. Another one to tick off on her list I suppose.

Is she still receiving the same treatment @GnomeDePlume ? I hope you have seen some improvement over the past few days.

@Anjo2011 Thank you for asking.

Turns out that the whole ward DM was in has moved.

DM is still on ABs but no longer IV. She is waking but still sleeping an awful lot. Fluids drip is also gone.

So sounds good but DM is eating and drinking very little and is needing to be fed.

But in hospital terms this is all good so they are getting ready to discharge DM.

I genuinely didn't think we would get to this point several times last week.

It does sound like there is some progress which is positive. Is their plan to discharge back to the care home? I hope they have the staffing levels to make sure she is eating and drinking. Has she managed any time out of bed? Thinking of you on this next step.

No actual plan as yet but the words 'readied for discharge' were said to DB.

The care home will do their own assessment of DM's needs. We chose a home with different levels/types of care: residential, dementia, nursing.

It is possible that the home will say DM needs to go into their nursing unit first and assess again from there. We are keen for DM not to go to the rehab unit if it can be avoided. It isn't a great place.

DM has lost even more strength in the last couple of weeks. She wasn't walking before and now is only partially propped up in bed. I also don't know what DM's cognition is like now. I have only seen her delirious or asleep in the last two weeks.

Even if DM does manage to get back to her care home I think it will only be a matter of time before there is another infection.

I am thinking of you still @GnomeDePlume My mother is in a home with the different units. She's in what they call assisted living. Halfway between residential and nursing. I expect yours was in the same? I hope your mother can be discharged safely back to the home and get the care she needs.

Thank you @WinterFrog and I'm thinking of you.

Yes, I think the set up of the homes sounds very similar. They do have a good staffing level and I find them very friendly.

Thinking of you @GnomeDePlume, I hope your mum Is ok, it does sound like she’s recovering from the latest set back. My mum is due to be discharged to a nursing home today, at last - she’s been in hospital since the start of Nov!

@Randommother that is a long hospital stay. I hope your mother settles in quickly at the nursing home.

I hope it goes smoothly 💐

From your description, it sounds like the two homes are part of the same chain. Staffing levels are good, and there is always someone to speak to when necessary.

Last night DB received a call from the hospital to say that DM was being moved to the discharge lounge last night with the intention DM would be returned to her care home today.

Cue panic from DB as he is envisaging DM being flicked out of a wheelchair onto the front step of the care home.

It is all a bit hasty but the hospital is overwhelmed at the moment. Patients like DM do have somewhere to go. DM is getting better. Yesterday she was put into a chair for the first time. It took 3 people but was managed.

Any road up, I messaged the care home to confirm DM returning today and left DB to his panic.

@WinterFrog if not the same chain then certainly one very similar. I hope your DM is settling in her new environment.

So far I have no complaints. One of the team contacted me a few days ago to ask how DM was doing.

I was in the care home a couple of days ago to pick up pjs and glasses for DM and one of the care workers unprompted asked after DM by name.

Of course DB has complaints but I think this is because he still hasn't got to grips with idea that the fees bring a certain level of service and furniture. If we want something different we have to provide and pay.

I hope she has settled back into the home

Thank you @Weenurse . We shall see later today if the move actually comes off.

I have warned DB that we need to see this as a temporary reprieve. Each go around the UTI block has left DM lower physically. If DM is infection free now, another UTI will be waiting in the wings.

This sounds a gloomy prognosis I know but we need to be realistic. Enjoy each day as it comes.

This might be a good time to start the conversation about the next time. My mum lives in a small nursing home and it has been agreed that she won't be admitted to hospital unless it is an acute injury. Any illness will be managed in the home by the nurse with the local GP and District Nursing team.

Seems so sad to be doing a 'future plan' like that (and that is, in no way, a criticism) but you have to, don't you. My DM who had a DNR which has mysteriously disappeared 😑refuses to have 'those kinds of conversations' with me/DF. If only she would be more open and accepting, things would be a little easier, for me but unfortunately, it's not about me, it's about her. Makes things so difficult.