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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:
Original poster
GnomeDePlume · 08/01/2025 15:14

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.

OP posts:
Anjo2011 · 08/01/2025 12:08

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.

Idontlikethewinter · 08/01/2025 09:49

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.

Original poster
GnomeDePlume · 08/01/2025 09:23

@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!

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Projectme · 08/01/2025 09:00

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 · 08/01/2025 08:08

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.

Candleabra · 08/01/2025 07:29

Thinking of you. It is so hard x

Original poster
GnomeDePlume · 08/01/2025 06:19

@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.

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Anjo2011 · 07/01/2025 22:03

@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.

Original poster
GnomeDePlume · 07/01/2025 20:57

🌻🌻🌻

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.

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Sharptonguedwoman · 07/01/2025 15:53

Oh my goodness @GnomeDePlume I am so sorry. There are so many of us walking the same hard path. My life has mirrored yours, these last few months. I didn't have to deal with DB as my DB doesn't visit and DS lives miles away but so much of what you have written is my lived experience. My DM has settled now into a pleasant care home where the staff are kind. I'm grateful. Wishing your mum better health and you, peace of mind.

WinterFrog · 07/01/2025 13:39

Poor little soul 😔 As a carer I worked with dementa patients towards the end of their lives, and you are so right that speaking to them in simple terms is much better. It's that old saying about people don't remember what you say, they remember how you make them feel.
Paramedics are wonderful, aren't they?
You're doing really well@GnomeDePlume , in case you need to hear it ✨

Original poster
GnomeDePlume · 07/01/2025 10:41

Sadly it is my experience with HCPs is what they are told is not what they hear.

'Doesn't understand' was heard as 'Can't hear'.

A simple thing like taking blood pressure or putting a pulse meter on her finger were frightening to mum as she didn't understand. 'Mum, they are going to put something round your arm which will go tight for a while then go loose' was all she needed to know. She didn't need 'I'm taking your blood pressure' bellowed at her repeatedly.

I find ambulance crews more humane. When mum had to be hoisted onto the ambulance trolley one of the crew admitted that he had it done to him to feel what it was like and said it was frightening as you feel so insecure.

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Idontlikethewinter · 07/01/2025 10:33

I do hope your DM is okay. It's bringing back memories of when my mum was in there last June. They diagnosed hypo dementia she was mostly asleep, but desperately thirsty.
The nurse in A &E told me a drink would be placed on her bedside cabinet if she reached for the drink and drank she could have it but if not she couldn't have one ! Seems very cruel. Unfortunately she passed sway 8 days later.
You're doing a fabulous job.

Candleabra · 07/01/2025 09:39

Very sorry to hear what you’re going through. I completely agree about a&e staff. My mum was admitted when she had severe dementia and they really didn’t know how to deal with her. She understood no language at this point but they kept shouting more loudly too! They really didn’t get that she couldn’t understand ANYTHING. It’s a good job I was there with her.

Original poster
GnomeDePlume · 07/01/2025 07:51

Many thanks again.

The thing I noticed most in A&E was how utterly terrified DM was. Several times I had to tell staff that DM didn't understand what they were doing. They just took this to mean they needed to speak even louder to her.

DM has no core strength so making her sit bolt upright when she was being sick just made her feel like she was falling so she was grabbing on to anything she could. Telling her to 'let go' didn't work. I found that giving her something to hold onto (my hand, the bed rail etc) gave her some comfort.

Given that so much of A&E work seemed to be to do with elderly patients I would have thought they would have more understanding in how to deal with them.

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WinterFrog · 07/01/2025 07:01

With you in spirit @GnomeDePlume Your poor mum. Wishing you and your family all the best, come what may 💐

Projectme · 06/01/2025 21:51

Sounds horrible for her; she must be so confused. I hope she is soon on the mend OP. Sending you strength to get through. 💐

Weenurse · 06/01/2025 21:29

Sending best wishes and a hug, this is a very difficult time for your family

Original poster
GnomeDePlume · 06/01/2025 15:25

Thank you for all the good wishes.

DM was transferred to an assessment unit within the hospital late last night.

DB is with her now. He has reported that her condition is not significantly changed from last night. She is mostly asleep, when she is awake she is confused, distressed and unable to speak at all clearly.

The medical opinion is that DM has an infection possibly originally stemming from a UTI. She is now on broad spectrum ABs. If she is going to get better it will take a few days.

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CaveMum · 06/01/2025 10:02

Sending you and DM all best wishes and strength for today @GnomeDePlume, hope that you get some answers.

Original poster
GnomeDePlume · 06/01/2025 07:28

My suspicion is that DM may have had another stroke. She was slurring her words quite badly. This was dismissed as DM not having facial or limb weakness on one side.

However, DM's previous stroke was atypical in that it affected her eyesight.

She was eventually sent for head CT and chest Xray but we didn't hear the results.

Perhaps today will bring more information. We have probably just experienced Sunday service in a badly rated hospital.

OP posts:
WinterFrog · 06/01/2025 05:22

@GnomeDePlume 💐

Original poster
GnomeDePlume · 05/01/2025 19:46

Thanks all.

DM is still in A&E. Still don't know what sort of infection she has. If DM had a UTI, that is gone. DM is very poorly, mostly asleep but if awake then distressed.

Additional IV ABs were planned mid-morning but still hadn't arrived when I left at 5pm.

I don't think it is norovirus. DM has no digestive discomfort.

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AInightingale · 05/01/2025 14:53

Cripes @GnomeDePlume. She's clearly very unwell if acting so out of character and being so sick. May be norovirus on top of a urine/kidney infection or something like that.

Frail old age is the first circle of hell, I'm convinced of it. 💐