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Hello again. :(

Grannie G

Volunteer Moderator
Apr 3, 2006
71,945
Kent
I remember thinking there was a dead bird on my lawn @LadyA.

Wimp that I am I contemplated calling my son to ask him to move it for me. Then I decided my independence was more important so armed with a stick, a shovel and a black bin bag I ventured down the garden only to find the dead bird was a leaf.

Please don`t think I`m making light of your mother`s hallucinations but her failing sight, as shown by the leaf, could be a contributory factor.

Does she have clear windows in her home or nets or blinds? Clear windows and good light may help if her eyesight is failing.
 

LadyA

Registered User
Oct 19, 2009
13,637
Ireland
Oh, @Grannie G I've done that myself! Just last week, there was what I was convinced was a white cat sitting very still out on the back lawn. So still, I was sure there was something wrong. Went rushing out. Oh. It was a white plastic container that had blown there in the wind! 🤣

Mum's windows are clear, but I find myself that double glazed windows do affect how things reflect. They can create a sort of "double" or semi double reflection, if you are looking slightly sideways on. So, I think it's a combination of mum mistaking what she's seeing, and/or not being able to see things out there clearly, and her eyes are projecting incorrect images to her brain, if that makes sense? Yesterday, she was all about the people outside. I distracted her with a constant chatter, and that helped, but it was quite exhausting! She was also going on yesterday about the people she could see in the (switched off) tv screen, and "that big round, grey thing they are holding up", until I moved her walking frame, to show her that what she was seeing in the tv screen was just the reflection of objects in her living room. The big round thing was the sort of cubby/tray on her walking frame.

She ate an excellent lunch with me though, and just about licked out the little tub of toffee/orange cheesecake for dessert. Today, I will take another urine sample in. Doc said last week that there "wasn't enough of anything showing that would warrant treatment" but he wanted another sample today.
 

LadyA

Registered User
Oct 19, 2009
13,637
Ireland
Sigh.
Monday, I dropped out a sample to mum's doctor. Tuesday, my sister in law said mum was very insistent about the people she's seeing, and this time, they were in the house. Two children hiding under an impossibly small table. Yesterday, she was in full flight with it. "Those cats followed me home from the hospital" and how people were coming out of her (switched off) tv screen into the house. How when she was going to bed Tuesday evening, she found a young boy out in her porch. She spoke to him. And then he left without saying a word. I asked "how did he leave mum? Was the door open?" and she looked confused, and said "He just left. He must have opened the door." I'm actually feeling sick at the thoughts of going in and dealing with it this morning on my way to work. I rang about the sample yesterday, to see if it had showed anything. They said it's not back yet, they had sent it out to the lab in the hospital, which means that something did show in it, and they need to find out exactly what.

Mum's just about living on antibiotics for uti's. How long can that go on for? Not very long, I would think.
 

LadyA

Registered User
Oct 19, 2009
13,637
Ireland
Actually, I worried for nothing. Mum was fine this morning. All she said was "those people out there are very quiet this morning, although they are still there." However, as the day wears on, it gets worse.

The doc rang with the results of the tests. She does have an infection, but the only antibiotic that will kill this particular bug is one they would only use if it became "clinically necessary" as a last resort, because, he said, it's an extremely harsh drug, and the cure could well be worse than the disease. However, he emailed me the report from the lab, in case mum's condition deteriorates, and I need to take her to hospital over the weekend.
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,707
66
Toronto, Canada
So I guess the hallucinations are a part of sundowning, or at least the worsening of them.

Not good news about the tests. I can understand the last resort for a very strong drug.

I wish you strength and serenity and good health.
 

Sarasa

Registered User
Apr 13, 2018
1,831
@LadyA, I was hoping the people in the garden was Charles Bonnet syndrome, as it sounded a bit like it, specialty the fact that she sort of knew they weren't real. Now they are coming in the house it does sound like it could be part of sundowning or the infection making it worse.
Fingers crossed you don't need to go to the hospital and that it clears up without the antibiotics. My mother has been known to have spectacular adverse reactions to antibiotics so I think her GP was being wise to see it as something of a last resort.
 

LadyA

Registered User
Oct 19, 2009
13,637
Ireland
Shortly after 11 last night, mum phoned me. Whispering urgently into the phone. "I can't talk loudly, in case they hear me. There's someone in the attic. They're using tools or something to try and get down into the house." I almost threw up there and then, because people living in the attic, and trying to get down to kill us was one of William's persistent scenarios. Mum was insisting on this, and was very distressed and terrified, so I went in. It's a half hour drive each way.
There was indeed a noise. It's an old broken bracket from a tv aerial that was removed from her chimney years ago! It bangs in the wind. On the phone, I explained this to mum, that it was just the bracket blowing in the wind. "There is no wind here!" she insisted. (there was a gale blowing, but as I'm on the coast, the wind is always stronger here). So, anyway, I went in, explained to her, went to the attic and checked it to reassure her, chatted for a while, and finally settled her down with hot milk and a chunk of fruitcake, and came home. I hardly slept last night, waiting for her to ring again. I'm going in now shortly. The family are feeling I need to talk to her doctor again tomorrow, that they need to try the antibiotic. They see her as getting progressively worse, but I usually see her in the morning. She's at her best then. They generally go in the afternoon, and she's always getting more insistent about the "people" by then, but even at that, they all say that she is worse in the last few days.
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,707
66
Toronto, Canada
Are you starting to consider the possibility of her going into care? She may be able to wash and dress herself, but the hallucinations, anxiety and fears I feel are enough to warrant long term care. I know you don't want to hear that but at least consider the options.
 

LadyA

Registered User
Oct 19, 2009
13,637
Ireland
Are you starting to consider the possibility of her going into care? She may be able to wash and dress herself, but the hallucinations, anxiety and fears I feel are enough to warrant long term care. I know you don't want to hear that but at least consider the options.
Oh, I would think it's coming, @Canadian Joanne . But, mum's still got capacity.
The way the system works here is that they do two assessments - one to establish that the person needs full time care and to see what/how much care and support is available from family/community, and then a financial assessment. The bottom line is though that at the moment, mum wouldn't see any need for more care, and she's got the right to decide that. My personal opinion, particularly after my experience with William and how much more relaxed and comfortable he was in the nursing home, is that mum would be much better in a nursing home. But, I suspect they'll have to exhaust all other possibilities first. This possibility is already exhausted! I've so many more committments and draws on my time and energy - and of course, I'm a bit older! - than when I was caring for William.

I know mum's eyes may be part of the problem. Now, she's having difficulty in the bedroom (the only place there's a patterned carpet). She said she's never sure of her feet, sometimes she thinks there's a hollow, or a bundle of dark clothes on the floor.

I spoke to her a while ago. She was non stop about the people outside - whereas this morning, they only got a passing mention, although she was seeing people in the TV screen again. She said she's going to bed now, although I told her it was only 6.45. I suspect she's trying to avoid the "people".

This afternoon, I sat here, utterly exhausted, and started wondering if I should pretend I'm ill for a while - take time off work, switch off the phone, and relax here, and see what happens. But I know I couldn't do it, really. Please God, let her sleep through the night.
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,707
66
Toronto, Canada
Yes, they do say patterned flooring is a problem. Would it make sense to change the bedroom flooring?

The bigger issue is your exhaustion. Very soon you may not have to pretend you are ill, as I think you could easily fall ill. Give taking time off some thought, because you may well fend off a worse situation.
 

LadyA

Registered User
Oct 19, 2009
13,637
Ireland
Another update.
Mum went down with a diarrhoea bug on Saturday, 26 Sept. Was, she said, up all night with it. She is only just over it since Tuesday. It wasn't terribly frequent after that first night, but with mum's mobility issues, she wasn't making the loo in time, and was then cleaning things up herself, so between the illness and the work, she got exhausted. I went down with the bug on the Monday night, but by Tuesday night, I was fine again. Getting an occasional sharp cramp until a couple of days ago, but was otherwise well. Mum continued to get an occasional cramp until yesterday, but is otherwise over it. Her doctor stopped her daily antibiotic, as he feels they may have been partly the cause. Of course, this does leave her more vulnerable to the pseudomonas infection she is living with.

We can all see how much the bug has caused mum to deteriorate. So much frailer. She's literally just shrivelling away. And getting her to eat is becoming a problem. She will have her breakfast. Sometimes, she will eat a snack during the day. She keeps saying she's having her dinner, or sandwiches, but she isn't. Well, some days, she will eat a very small dinner.

Yesterday, I found her,....I don't really know. Quite vague? But was able to hold a conversation, if prompted. She was exhausted, and I encouraged her to go lie down for a rest. My sister in law called in at around 5, and mum was so tired, she went to bed then. I bet she'll be telling me this morning how she woke up in the small hours, and hasn't slept since! I think, to be honest, that mum is starting to fade. How long that will take is anyone's guess. Her doctor is (finally!!) coming to see her on Friday morning, to give her her flu shot, and "cast an eye over her".

I found myself getting very upset and tearful yesterday, as I went to her local supermarket. It's the odd things that get you, isn't it? There was a car reversing into a disabled parking space. I got so upset, remembering that it doesn't seem long ago that I was taking mum shopping, and how delighted she'd be if there was a disabled spot free! And then I started thinking back to how well she was just three years ago, when I took her away for a weekend. She was using crutches, but was able to walk a long way with them.

Still, at least I'm here. My sister and youngest brother are on the other side of the world, and can't travel home. That's so terribly hard for them.
 

LadyA

Registered User
Oct 19, 2009
13,637
Ireland
The doctor came yesterday. I think he was a bit taken aback at how thin nd frail mum has become in the few months since he saw her last.
She told him quite freely about the hallucinations. He said that she seems to have a good handle on them at the moment, and she says she isn't frightened by them now, so he said he doesn't want to try any medication at the moment, because she's on such a lot of other meds. However, if things get worse, and she becomes frightened or more distressed, he said he will rethink that. They had a good chat, and mum told him about her memory and how she's "lost" almost an entire year, between her hospital stays.

As he left, he said to me that he thinks the hallucinations are a sign of escalating dementia rather than caused by the uti. I guess we can hope that as things progress, the hallucinations will disappear. He's put her back on the daily antibiotic, as he said she really needs that. The infection she has needs to be controlled as much and for as long as we can.
 

LadyA

Registered User
Oct 19, 2009
13,637
Ireland
Time is flying by, and here we are over here, back in lockdown for six weeks. However, I'll be carrying on as normal, with work and going to check on mum.

I hope I'm not speaking too soon, but on Thursday last, mum told me that the "people in the garden" had tidied away all their stuff - the chairs, boxes etc that she'd been seeing out there. Saturday morning when I got there, she was peering out the window, and said "Nobody has turned up out there this morning yet."
And she hasn't mentioned them since. 🤞🏼🤞🏼🤞🏼