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 again for the words of support and sanity in a slightly mad situation.

I was with DM this evening. She is calmer than at the weekend, less delirious but not speaking at all. Eyes shut but awake and fussing at her gown. She is horribly uncomfortable with a catheter which is irritating her and a large pressure sore which makes lying on her back uncomfortable. Very high pulse and BP when obs were done.

Something I have noticed about our local hospital and I dont know if this is typical:

It's their use of tenses - something has/is/will happen - I noticed it this morning when I phoned at 10am. I was told DM was on ABs. In fact those ABs werent administered until 2pm.

The same happened in A&E. Told DM was going to be given ABs on Sunday morning, just waiting on someone to set up the IV. This didnt in fact happen until Monday.

@GnomeDePlume its so upsetting and tiring for all of you. My DM picked at her hospital gown and bed linen repeatedly it is called Carphologia. Apparently when the patient is distressed, anxious or fearful. That would make sense. Very common in elderly especially in a hospital environment. Thinking of you as you go from one crisis to another.

@Anjo2011 Thank you for that. DB was especially worried that this meant DM was feeling too hot.

Thinking of DB, I know I have complained a lot about him on here. He isn't practical and tends to get frustrated when practical things aren't sorted the way he wants them. But with regards to mum, he really has been pulling out all the stops.

Thinking of you. It is so hard x

Hi. Hope your doing okay. Just to correct my earlier post. My mum had hypodelerium not hypo dementia as I previously said. Your mum sounds very similar to mine. Mum also had the picking at her nightie and sheets I didn't realise there was a name for it.
Ask about the hypodelerium if she doesn't have an infection maybe it's that. Apparently it can last a while.

Yes, I can relate OP with the has/is/will when my FIL was hospitalised 4 years ago. One Dr saying one thing so we would wait for it to happen (i.e. AB via drip) then next day a different Dr saying no ABs as we are still establishing source of infection then next day another different Dr saying why aren't the AB's being administered. Same with scans/Xrays - being told one would happen that day then told the next day that he hadn't been scheduled for a scan/x-ray and who told us he would be?!

Very very frustrating.

Glad to hear your mum is a little calmer.

@Idontlikethewinter thank you.

It is still unclear whether DM has a current infection. Different departments disagree on that front.

We have been here before. The main hospital discharged DM to the rehab community hospital with what the receiving GP described as high infection markers in blood tests which the main hospital had run themselves and declared clear.

DM is now in day 3 on the assessment ward. They will be looking to move her on soon but where next? I suppose obstetrics haven't had her yet!

Oh dear it's so confusing isn't it. They should be repeating blood tests anyway. Bless her it's awful for her being moved around and continually investigated.
It was for that reason, with the help of the Drs in A @ E because I didn't have POA, I said I didn't want any more investigations or antibiotics, and with their agreement we sent her back to her care home, on palliative care. She passed away very peacefully 8 days later in the best comfort and care we could give her.
Thinking about you all.

Sounds so similar to my DM, they told us she was on antibiotics, she wasn’t. She had three different sized catheters trying to drain the urine. In the end sepsis crept in and it had taken such a hold there was no reversing it. Many of us have expressed our experiences here on the lack of info and the fact that they say something is in place when actually it isn’t. The only time I got any accurate were the few times I managed to speak to DMs doctor. As I’ve also said before it’s all so reactive, no pro active care. Those experiencing this , you are in my thoughts.

DM has now been moved to a ward she has been on before.

She has now been put on an insulin drip but we don't know why. Until the last day is so her blood sugar readings have been fine.

As you are all saying, this is so confusing.

Also, the lack of communication or obtaining of consent for IV insulin is very worrying. DB and I have LPA but the hospital does feel like it is being cavalier.

Ask the nurses what time her Dr does the rounds and try to be there. Easier said than done I know. Find out what they are treating and why they are using the medications that they and what’s the plan and long term prognosis. It’s like running uphill through treacle. Sending best wishes.

Would that that was possible. Doctors rounds are carefully timed to be outside of visiting hours.

DB is with mum now but I think he is frightened of doing the 'wrong' thing. It doesn't help matters that actual nursing staff are thin on the ground and DB struggles to understand when he does speak to them because he is a bit deaf.

DB has now got some information. DM is on a saline and glucose drip because she isn't eating at all. The IV insulin is to stabilise her blood sugar.

DM sound asleep throughout and DB not sure she is aware that he is there which is sad for him.

DB is very close to DM especially since DF died.

@GnomeDePlume its just so sad isn’t it. I really hope the next few days bring some answers and plans. Not knowing is worse than dealing with the facts. Take care of yourselves.

So much love for you and your family @GnomeDePlume 💕

What a worrying time for you all. Sending strength and a hug 🫂 to you all.

I have said to DB that we need to have the conversation about when do we say 'enough is enough'. I don't know if we are at that stage yet but I don't feel it can be far off.

This will be difficult for DB but I do hope that me initiating the conversation will give DB the permission I think he feels he needs to let go when the time comes.

Families are complicated. DB has felt like 'head of the family' since DF died 30 years ago. In many ways I think he still feels beholden to DF. Not keeping DM alive will feel, to him, like he has let down both parents.

I'm the practical one, the pragmatic one, the less emotional one. I broke free from DParents a long time ago.

If it helps DB, I will push the hard decisions then he can blame me and never speak to me again. Except that we are co executors for DM's will along with DB2 who has tended not to feature in this family crisis.

It’s so tough to make the ‘decision’ of carrying on with treatment or letting nature do its thing. My DM would have been left double incontinent with no mobility and needing kidney dialysis three times a week as well and that was just for starters. At 87 that’s a rough road. We didn’t need to decide as she went of her own will in the end. Is there a DNR in place? Thinking of you at this most hideous of times.

The GP started the conversation about DNR with mum. The on one of the visits to hospital the doctor sat me down and had the “when you know enough is enough” conversation (for the future).
Can you speak to the medical team as the initiation of the subject might fall better with DB from a neutral party.

How did your DB respond to you initiating the conversation OP?

So very difficult for you and your brother. All that matters here, at the moment is your mum, if you think she's suffering unnecessarily have the conversation with her Dr and your brother.
Sending lots of strength and love.

🌻

You are doing so well, advocating for your mum and extending such compassion and grace to your brother at this very stressful time. Best wishes to you all xx

I think he was okay with it. Having the subject broached means it is no longer taboo.

This afternoon when DB was with DM she woke up a bit and had some banana but has now gone back into a deep sleep which hasn't been disturbed by trying to put a fresh canula in her hand.

DM's veins are terrible. Also now on clexane she is bruising horribly.

I will be visiting this evening.

Thinking of you. 💐