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Elderly parents
Original poster

Where do we go from here?

510 replies

GnomeDePlume · 16/10/2024 23:25

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.

OP posts:
Anjo2011 · 15/01/2025 13:06

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

Original poster
GnomeDePlume · 14/01/2025 20:09

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.

OP posts:
Holesintheground · 13/01/2025 16:28

GnomeDePlume · 13/01/2025 16:05

@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.

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.

Holesintheground · 13/01/2025 16:08

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.

Original poster
GnomeDePlume · 13/01/2025 16:05

@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.

OP posts:
Original poster
GnomeDePlume · 13/01/2025 15:52

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.

OP posts:
purplelagoon · 13/01/2025 12:00

@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.

Original poster
GnomeDePlume · 13/01/2025 10:45

@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.

OP posts:
purplelagoon · 13/01/2025 10:28

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 Blush)

Original poster
GnomeDePlume · 13/01/2025 10:06

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.

OP posts:
Randommother · 13/01/2025 09:02

Good luck @GnomeDePlume, I hope you get the info you need at this difficult time

Holesintheground · 13/01/2025 08:58

Hope you get somewhere @GnomeDePlume 💐

Candleabra · 13/01/2025 08:57

Good luck. Thinking of you, it is exhausting. Make sure you’re eating and try to take care of yourself, I know it is not easy .

WinterFrog · 13/01/2025 08:55

The lack of communication is an absolute shocker. I always found it very difficult to find an appropriate person to talk to in the hospitals as well. Best wishes for the week @GnomeDePlume 🌻

Projectme · 13/01/2025 08:36

Best of luck OP. Hope you get some answers re; MRI and you get to speak to a Dr about DM and the way forward. Take care of yourself.

Original poster
GnomeDePlume · 13/01/2025 08:17

Thank you all.

Today's challenges with the hospital:

  • Does the ward have a copy of the LPA? (copies have been filed many times but seem to get pushed to the back)
  • Has the MRI been reviewed?
  • Can we have a meeting with DM's doctor to discuss next steps?

There, I have a 'to do' list.

While DB is at the hospital every day (except Sundays) he is absolutely useless at this sort of thing. He is slightly deaf so cant understand if someone has an accent. He then gets antagonistic. For all I know, he has been given lots of information but has ignored it because he didnt hear/understand it or it was given to him by a nurse.

DH does give me a lot of support. He has been here with his own DM a few years ago. His family is a lot more functional than mine so nobody was having to tiptoe round anyone else.

Loins are girded for another week.

OP posts:
Weenurse · 13/01/2025 06:43

Any MRI report yet?

purplelagoon · 12/01/2025 19:31

@GnomeDePlume I'm so sorry you're going through this and I'm shocked that the ward staff / doctors have not sat and explained to you about the current situation and what to expect next. I sadly do agree that it sounds like your mum is approaching end of life. Unfortunately it looks like you're going to have to be the proactive one and "demand" a meeting to discuss next steps. Sending hugs Flowers

MysterOfwomanY · 12/01/2025 18:52

@Weenurse that was pretty much my thoughts when I was told similar about an elderly relative. Didn't say anything because it wouldn't have made anyone happier or changed anything. A few days later he just didn't wake up.
@GnomeDePlume hope you have someone who has your back. Family or colleague or neighbour or friend or anyone.

Original poster
GnomeDePlume · 12/01/2025 13:09

Thank you

I think DB will be distraught in the moment. He was when DF died.

Having had the experience of sitting with DF through his final days and hours I do see similarities with DM.

I do wonder if the hospital are trying to establish DM's base level with the withdrawal of the fluid drip.

OP posts:
WinterFrog · 12/01/2025 08:08

Still thinking of you @GnomeDePlume I don't know what else to say 💕 I think your brother might need considerable support when you mother passes, which of course is inevitable even if she makes it through this time. Or do you think he'll 'hibernate'?
Wishing you peace and strength as you navigate all this.
None of this is easy, is it? 💐

Randommother · 12/01/2025 07:58

I have been on for a while, so really sorry to read your updates @GnomeDePlume, what a horrible, uncertain and shit situation you’re now in! Thinking of you and your poor mum 💐

Original poster
GnomeDePlume · 11/01/2025 21:11

You are so right, not knowing is worse than knowing.

I wish I could trust what we are being told by the ward staff.

Our experience hasn't been great. This was the ward which discharged DM to the rehab unit with high infection markers while claiming she was infection free. The infection was spotted by the GP on reception and DM was put straight onto IV ABs.

OP posts:
Anjo2011 · 11/01/2025 20:45

When you write about the current situation your DM is in, you could be talking about my late DMs final week before she passed away. Catheter, bed bound, drip, black hands from blood tests, IV a/biotics, not eating and constantly sleeping. The only difference is my DM had high infection levels that was sepsis. We too waited for results that never revealed anything. It is the most horrible feeling, not knowing what’s really going on. What’s your gut feeling OP? I was told in a corridor surrounded by staff and patients on trolleys that my DM was in a bad way, but I could see that myself. I knew she wasn’t going to recover. But I needed the doctor to confirm that so I could begin to understand what I was to expect in the following days. I so wish it were better for your DM, you and your DB. Not knowing is worse than knowing.

Original poster
GnomeDePlume · 11/01/2025 20:45

@Weenurse happy for you to be blunt and I don't think I disagree with you.

Unfortunately I suspect there will also be a performance indicator for patients dying on the ward.

DB thinks (or just hopes) that DM is getting better albeit very, very slowly. What he thinks 'better' will look like I'm not sure.

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