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Hello again. :(

LadyA

Registered User
Oct 19, 2009
13,637
Ireland
Another two calls from mum since. One, at 2a.m. wanting me to collect her and take her to the hospital because she has an appointment. The second, around 8, telling me that she was at my brother's house. And that it was odd, because he had the house laid out like a hospital ward, and there were nurses there, and funny enough, they were the same nurses that were at the hospital! She just wanted to let me know where to collect her for her appointment. The nurse told me when I rang that she checked mum shortly after 2 in the morning, and mum had her coat on and bag ready. Not for "going home" but for going to the hospital! She said mum's still very confused (ya don't say!), and her skin isn't responding to anti histamines, so far. She said that unfortunately, I seem to be the "anchor" that she latches on to, so I'll be the one getting the calls. Of course, it could be simply that my name is first on her list of contacts in her phone, so maybe I@m the only one she can find!
 

Starting on a journey

Registered User
Jul 9, 2019
435
I think you are right! Your number is the first one and is easy!
At least the hospital can’t deny that she is confused. It must be awful for her. I do hope for both your sakes it calms down.
 

jugglingmum

Registered User
Jan 5, 2014
5,916
Chester
I know the system is similar but different in Ireland.

If she thinks she is showing fluctuation capacity at best if she thinks that she is at home but it looks like a hospital and I guess you need to present this to the social worker - assuming you have hospital SWs like we do.

With no visiting it is difficult but making sure the nurses have noted these things will help your case.
 

LadyA

Registered User
Oct 19, 2009
13,637
Ireland
I know the system is similar but different in Ireland.

If she thinks she is showing fluctuation capacity at best if she thinks that she is at home but it looks like a hospital and I guess you need to present this to the social worker - assuming you have hospital SWs like we do.

With no visiting it is difficult but making sure the nurses have noted these things will help your case.
Tbh, I don't know how this aspect works here. William wasn't in hospital until a few weeks before he died. He spent a week there and then went back to his nursing home. Guess we'll have to see how it goes. Tomorrow I need to see how we can talk to a doctor and see if they know yet what's causing mum's problems. The physical ones, anyway. So far we've got: suspiciously tanned skin (jaundiced, I assume), high white cell count indicating an infection, skin blistering and peeling, confusion and hallucinations.
Of course, the symptoms may not be all connected to each other.
 

LadyA

Registered User
Oct 19, 2009
13,637
Ireland
I left a message this morning for whatever doctor is "over" mum to call me, but of course......! Still, I didn't get any phone calls during the night. I had turned off the phone, but there were no missed calls on it.

Mum's rash is much better. She said the dermatologist told her it was something to do with an ingredient in the antibiotic. She said the physio is taking her out for walks in the corridor. Also, that they are giving her little drinks in a blue bottle.

But my heart is broken about her. I phoned her this afternoon. She answered very quickly. She said "Oh, thank God! I was just trying to ring you!" and I had a long ramble about how there was someone behind her bed, and they were sticking a knife into the pillow, and she was terrified to move in case they would see her. And the "program" playing was so horrible. They were lining everyone up and then they would take one at a time, and some were stabbed and some were shot. She saw the whole thing! poor mum was so upset and terrified. I told her she should call the nurse and tell her, but she couldn't find her buzzer, and she said she didn't want to move anyway. So, once I (eventually) got her off the phone, I phoned the hospital and told the nurse what mum had told me, and she went in to her. Then mum phoned me again to tell me the nurse had been in. And again immediately after, and I have to admit, I didn't answer it.

During her long call, she told me all about her day yesterday. My brother, she said, collected her and took her to a clinic. They waited and waited, and hundreds of people came and went, but she never got called. So, she was taken to my brother's house, and they drove in around the back of the house. But when she went inside, it was all done like a hospital, and there were nurses there. The same nurses that work at the hospital, much to her astonishment. She told a nurse she was looking for *** and the nurse asked her who that is, and she said "my son. He lives here." and she was wondering where he was, why wasn't he there in his house, etc. etc. and the nurse said "D** you are in hospital now. This is the hospital." Weirdly, even as she's telling about all these things, on another level, she's perfectly lucid! Knew I'd been at work today (I only work on two days a week), asked if I had checked the mailbox at her house, and what was in it. And, on me telling her about a bill that had come, she told me to pay it for her.

She seems to be vaguely aware that some things are not quite real, when she recalls them later. And she told me that her memory is really going, in that she just cant' remember the word for so many things. For example she wanted a particular chocolate bar, but no way could she remember what it was called. "The chocolate my mam used to like." Good thing I remember my grandmother very well. She had a steady diet of player's cigarettes, tea, an occasional coffee made on milk, and Fry's Cream chocolate!

So, who knows where it's all going to lead. The nurse said the rash is much better, and they've changed the antibiotic. Mum said they seem to be putting water through a hose (I'm assuming it's IV antibiotics or fluids.) Mum's been in indifferent health all her life, and downright poor health for many years. Normally, you would think she was at the very least, a nurse! She has all the medical jargon off. I could hardly believe she didn't recognise an IV line.
 

LadyA

Registered User
Oct 19, 2009
13,637
Ireland
Oh, dear god!
My sister in law got through to the hospital this morning. The nurse told her that mum was going to be discharged tomorrow. There has been no discussion of home care. "She has a stair lift" the nurse said!

I called the nurse, and she said that the doctor will review mum this afternoon, and call me (he hasn't). I assured her that mum is NOT being discharged, because I'm not taking her. She is still hallucinating and confused. Of course, as the doctors haven't spoken to any of us, maybe they are assuming that that's "normal" for mum? I did talk to her gp this afternoon, and he said that it sounds like mum certainly wouldn't be safe at home on her own, and that I need to refuse to accept discharge.

My other sis in law has just said "Gosh, it's lucky that you brought her clothes home with you!" I told her that luck had nothing to do with it. I took mum's keys and purse home too!
 

Melles Belles

Registered User
Jul 4, 2017
460
South east
We used to remove the key from his key safe when my dad was in hospital just in case they suddenly decided they would discharge him without discussing with us. First. We had LPA
 

LadyA

Registered User
Oct 19, 2009
13,637
Ireland
We used to remove the key from his key safe when my dad was in hospital just in case they suddenly decided they would discharge him without discussing with us. First. We had LPA
It's different here though. an Enduring power of attorney can't be used until registered, and can't be registered until a doctor and solicitor has certified that the person has permanently lost mental capacity.
 

LadyA

Registered User
Oct 19, 2009
13,637
Ireland
The roller coaster travels on.

This morning I had a call from mum. Sounding stronger, and completely lucid. Am I relieved? Do you know, awful as it sounds, I don't know. With mum so confused, weak and hallucinating, it wouldn't have been hard to get her into a nursing home, because lucid or not, she really does need full time care now. But, if her mind has stabilized, she won't go anywhere but home, to continue living alone.
 

LadyA

Registered User
Oct 19, 2009
13,637
Ireland
Yesterday, I was told they hope to discharge mum today or tomorrow. She does sound much better. She's not hallucinating. And yet......
I can't put my finger on it. I'm uneasy about it. Maybe it's just that we can't actually see mum, and talking on the phone isn't really the same. But, although mum sounds so much better, and she's not hallucinating, there is just something niggling me. Something about conversations with mum just don't ring true. It's just a feeling I have, although I can't find a basis for it. To me, it sounds like mum is "performing", if you know what I mean?

I guess we'll soon find out. They will actually have to communicate with us for discharge, because I took mum's clothes and keys home with me! 😬 So, we will see. I said to my siblings that I'm just looking on it as "mum will be going home until next time".
 

imthedaughter

Registered User
Apr 3, 2019
506
To me, it sounds like mum is "performing", if you know what I mean?
As we know, people do sometimes do this to get out of a situation. Host mode, for example. This whole thing sounds utterly terrifying for mum and you. I am finding it hard to believe her tests have come back clear after she's lost so much weight and she sounds so frail. Keep us updated if you want to and it helps to share - my thoughts are with you.
 

Sarasa

Registered User
Apr 13, 2018
1,820
I think I know what you mean about your mum 'performing @LadyA. When mum was at home I often had phone calls with her that seemed on the face of it totally rational but something about they way she spoke reminded me of talking to a fluent, but non-native speaker of English. It sounded like she was concentrating to ensure that she used the right tense or word.
It is a worry, but as they'll have to communicate with you to get her home you can raise your concerns. I hope the next time isn't for a while though.
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,707
66
Toronto, Canada
Trust your instincts @LadyA. You a) know your mother very well and b) have your experience with William to draw on. So if you have a niggling feeling, I think you're quite right. And boy, do I get the 'performing'! My mother was a past mistress of that art in the early stages of the disease.
 

LadyA

Registered User
Oct 19, 2009
13,637
Ireland
Mum didn't get discharged yet after all. They are saying "probably Monday". She's been getting several litres of fluid over the weekend, because of low blood pressure, and she was being on a nebuliser because her potassium levels were too high (due, I assume, to her poor kidney function). She sounds, now, much more like herself. No confusion, other than the bit of disorientation that you could put down to the days all melting into each other, and not seeing anyone other than staff. Just once or twice, she'll say something that is a bit odd. LIke, this morning, she told me that a nurse with a very hoity toity accent was there, and another patient asked her if she had children, and she said that no, she'd only been married about two years. Mum took it that she was divorced after two years, and that was why she had no children. Mum doesn't realise how long she's been n hospital.
Mum, every time I talk to her, tells me that she's absolutely freezing. i don't know why. Although, she always feels very cold, so it's not something new. And I remarked to her today that one of her nighties is size 18/20. Mum is barely a size 10. She said "Oh, that was probably one I wore when I was pregnant." Granted, the nightie must be about 20 years old, but it certainly doesn't go back over 50 years! Time, I think, is a bit fluid with mum.

So, we'll see what develops.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,931
Kent
Will you be able to be present when her discharge is being discussed on Monday @LadyA. If not, will you be able to make the hospital aware of your concerns?

There still seem to be a lot of medical concerns, which could be causing so much confusion but then again, would she be safe at home.
 

LadyA

Registered User
Oct 19, 2009
13,637
Ireland
Will you be able to be present when her discharge is being discussed on Monday @LadyA. If not, will you be able to make the hospital aware of your concerns?

There still seem to be a lot of medical concerns, which could be causing so much confusion but then again, would she be safe at home.
No, we can't be there. Nobody other than patients and staff are allowed in to the hospital. If I'm honest, I'm really hoping that her blood tests today aren't good, and they have to keep her. particularly as she has an outpatients appointment on Wednesday to have a skin cancer removed from her face.
And I'm working this morning, so if they do discharge her, she'll have to wait in the "Discharge Lounge" until I'm done.
 

Agzy

Registered User
Nov 16, 2016
1,562
Moreton, Wirral. UK.
More long standing members will know me all too well! I don't log in much these days, since my husband died four years ago. However.

My mum has been doing well for her age/state of health. Getting a bit more forgetful and occasionally confused, but nothing to cause any concern about her capacity or ability to live on her own. Until last weekend. She fell and broke an ankle. The hospital put one of those "boot" things on, so that (and I distinctly remember the nurse saying this) "you can just put a little weight on it when you are being transferred bed/chair/commode". She said if they put a full cast on, mum wouldn't be able to weight bear on it.

Mum's been urine incontinent for several years due to kidney/bladder problems. She had a urine infection recently, treated with antibiotics, which (we think it was those) brought her out in an awful rash. Anyway, by Tuesday morning when I got there, it was to find mum totally delirious, out of bed with the "boot" taken off and taken apart, having got herself across the room and dragged the commode back to the bed, moved a bedside table, and drawn the curtains! Her gp called an ambulance, and she's in hospital since. During the week, the family were convinced she wouldn't be coming home again, that she'd have to go to full time care. She had no clue what was going on, where she was, was hallucinating and having delusions about where she was/what was happening, etc. The hospital say it's a urine infection, and have been flooding her with antibiotics. Her chart (I peeked at it!) says "uro sepsis". Thankfully, yesterday, she was much better. Weak as a kitten, and has no appetite, but only wandered off track a couple of times.

Fingers crossed that she recovers enough to go back to independent living again! I found that her hallucinations and delusions just brought the hell my husband (and I) went through with his dementia, and I was having panic attacks, and realised I just can't go there again.
I went through similar with my OH a few months ago and I was convinced she would have to go into a home but, after a long slow couple of months she now appears to be at about 80% of her previous self and of course back home @LadyA