Hello again. :(

[LadyA]

Yesterday, I took mum down to see her sister. They're twins, and this was the first year they didn't celebrate their birthday together, because of the lockdown. Since Monday last, we've been allowed to travel to other areas of the country, and mum's sister lives just over an hour away. I got them a birthday cake, for a belated celebration.

Mum really enjoyed the day out, and seeing everyone. Her sister did tell me later that the confusion did get more noticeable as the day moved on. Repeating things, totally confused about timelines, etc. Still, though, it was a very enjoyable time, and they were thrilled to see each other. Mum even enjoyed the drive down and back, as it was nice for her to see something different, after "cocooning" for so long, and then being in hospital. And it was lovely to get the annual "birthday photo", even if it is almost three months late!

Mind you, when I got home yesterday evening, I had a horrible scene waiting for me! My living room was literally swarming with horrible big flies! Literally, hundreds and hundreds of them! They were still swarming out of the chimney, which I knew was blocked with a crow's nest. I loathe flies. Can't handle them at all. I shunted the cats out of the living room, sprayed about half a can of fly spray into the room, and shut the door! Then I went in and taped plastic over the fireplace, and phoned my son in law for help. I don't mind saying, there was no way I could have stayed here with the flies. I was almost hysterical!

Anyway, son in law came straight over, and I got out the rods and the spiral hook for clearing drains, and he got to work. I hadn't dared to start clearing the chimney, because I was afraid of what might come down. Obviously, there was something in the chimney causing the flies! It took about half an hour to clear the blockage. Thousands of twigs, then moss, dried grass, dead crow, bits of dead crow, more moss and grass and tons of dust!! All cleared out now. I vacuumed up the fly corpses, and when SIL was done, I dusted and washed the floor. And definitely there's a cap going on that chimney now. I've been meaning to do it for a few years, and just not got around to it. And I'll put a bird cage on the other chimney. Apart from anything else, I couldn't believe the difference the open chimney made to the temperature in the house! There was a chilly wind blowing here yesterday (and today!), and there was a nasty cold draught blowing around the house! So, plans are to cap the chimney and cover in the fireplace with something decorative.

 

[Sarasa]

That sounds like a lovely day with your mum. Interesting that her sister thinks she is a bit contused too. The crows nest not so much, but thank goodness your son in law was at hand to sort it. Hope you can get the cap/bird cages sorted soon.

 

[Grannie G]

Your day with your mum sounds lovely @LadyA even if it`s a bit worrying her twin noticed a change.

The fly situation would have made me hysterical. I`m so glad help was at hand.

Environment or not, I`m afraid I have a can of fly spray in every room. If a fly is humming around I spray the room, close the door and go into another room for a while until it is safe to return. I also spray indoor window ledges and the carpet by my french doors if the widows are open.

 

[Canadian Joanne]

@LadyA The birthday celebration with your mother and aunt sounds lovely.

The fly situation sounds like a horror movie. So thankful your SIL was there for you. I would have been hysterical - I cannot abide any sort of insects. One or two I can manage (and kill them if they are small enough) but a swarm of flies!!!! I'm even worse about spiders and no, thank you, I do not need or want the lecture about how spiders are good. I know and I don't care. Anything with more than 4 legs is unnatural to me.

 

[LadyA]

Mum's been doing really well, thank goodness. Her Home Care ends on August 5, but the phn is trying to get at least a couple of days a week, but she's not holding out much hope.

Meanwhile, yesterday, mum had a routine appointment with the gp surgery nurse, to have bloods done. I got her to bring a urine sample along too. So, during the appointment, the nurse left the room, and came back with a doctor. Who gave a prescription for antibiotics, and explained that they are sending the urine sample out to the lab to analyse the infection mum has and to see about a prophylactic antibiotic.

I just couldn't believe that mum has another infection, that quickly. Thankfully, we seem to have caught this one in plenty of time, so I'm hoping the antibiotics do their job this time.

The nurse was asking mum about her diet, how she eats etc. and mum assured her that she eats a good dinner because we bring her dinner in. "And do you eat it?" the nurse asks. "Oh, yes! Every day!" mum says. "And what about fruit and veg? You need to eat lots of fruit & vegetables." "Oh, yes! I eat loads of fruit & veg!" She doesn't. She rarely eats veg, other than any we put in her dinners, and there are apples sitting there dehydrating since she came home from hospital. The nurse asked about her other meals, breakfast and something in the evening, and mum assured her that she eats a good breakfast (and she does. Well, a bowl of cereal), and that in the evening "I'd make sandwiches or scrambled eggs". I'm removing the eggs that have been in mum's fridge now for a month. She hasn't eaten them. She will often, when I remark that she hasn't eaten her dinner the day before, claim that she made sandwiches. But I find the bread, ham, cheese etc. all still there, untouched.

But, in general, she's doing very well. The phn was assessing her this week, and of course, a mini mental was included in that. Mum says the nurse was just astonished at how good she is and how well she did. Then she said "Honestly, you'd want to be a fool not to know what questions they would ask, at this stage!" She's done the test so often (she said every day, while she was in hospital) that it's become pointless. She knows to be prepared for it.

 

[LadyA]

Mum's now been on antibiotics since Wednesday, for a UTI that hadn't shown any symptoms at all. Last evening, she started hallucinating again. The same stuff as last time. people out in the garden, looking in at her. Several women, three or four men, a few children and a few dogs. Today, when I went in, it was the same. She had all the blinds down, to hide from them. Interestingly, when I went out to the garden, thinking that if she could actually see me there, she wouldn't see the others, she got agitated, because "that woman, she watched every move you were making!" She not only could still see them, but the hallucinatory people were aware of me, moving out of my way, but watching.

We went to my brothers for lunch and the afternoon. Mum was perfectly fine. Totally coherent, no mention of anything. I took her home, and she went straight through the front door to the kitchen window at the back. "Now! Don't try telling me that you can't see them!" and on and on. Was very bizarre, the immediate change once she was home.

I'll be contacting her doctor and the phn first thing.

 

[Izzy]

Oh my goodness @LadyA how worrying for you.

 

[Grannie G]

So sorry to hear this @LadyA.

It`s surprising the hallucinations seem to be permanent and just in your mother`s own home. I hope the doctor will be able to suggest something to help.

 

[nellbelles]

@LadyA how worrying for you I hope the doctor can help..

 

[LadyA]

So sorry to hear this @LadyA.

It`s surprising the hallucinations seem to be permanent and just in your mother`s own home. I hope the doctor will be able to suggest something to help.

Well, she hasn't actually had them since she came home from hospital until this weekend. Before her hospital stay, she had gotten ten months without an infection. Well, I suppose it was actually less, because the infection in June sort of sneaked up until the hallucinations were really bad. She was discharged at the end of June, and here we are again, already. So, who knows where it is all going. But it's very worrying. personally, I think that although she has mental capacity, mum needs full time care now. She needs more stimulation and company than we can give her, between work and other committments. And she needs a professional eye kept on her. I know that she's lying about how much she's drinking. She insists that she drinks loads. She doesn't. You'd know to look at her. Besides, I keep finding drinks left aside, more than half full. And besides again, I buy the mineral water and juices she drinks. I haven't needed to buy any for about three weeks now. It takes her a week to get through a 1L bottle. And yet, she remembers to take her antibiotics every day, even though they aren't in her blister pack. She knows that her renewed blue badge should be here any day (you have to send back the blue badge in order to be issued a new one. Ridiculous, although I do understand the reasons, because meanwhile, I can't realistically bring her anywhere much.).

I feel really selfish about it all. But I know that if mum was just forgetful, or losing her memory that way, I could cope with caring for her. But I can't handle hallucinations again. I was having palpitations and getting short of breath last evening after leaving her home. I must have taken my temp eight times between getting home and going to bed! I check my temp twice a day anyway at the moment, because of working with such vulnurable people. And I was convinced yesterday evening that I was going down with the dreaded virus! But no, it was just a bit of panic which triggered my asthma. I lay on the couch and watched a dvd, and went to bed too late, but I'm fine this morning.

11.15 pm. Somehow I forgot to actually post the above! So, thought I'd just add to it.

I left a message with mum's doctor's office. He's on holidays, but another doctor was to phone me back. No call came, but at lunchtime, when I went to check mum, the doctor had phoned her, looking for me! Twit! Anyway, mum says she told the doctor about being on the antibiotics, and that she was seeing people, but that other people couldn't see them. The doctor said to just come in for her appointment on Wednesday.
I had also left a message for the phn, who called me back this evening, with some good news. Mum's been approved for permanent Home Care, three mornings a week. And it will be the same Care Assistant that's been going in to her during her "discharge package", for the last six weeks. That's really good, because mum gets on really well with her, and tells everyone what a lovely woman she is.

Mum felt that if she could go out in the garden, she might figure out what she was seeing. Now, mum's disabled. Her garden has three steps down from the back door, and then three narrow, steep steps up onto the lawn & flowerbeds. It took me a while (and a lot of nerves!) but I did manage to get her down the steps, so she could have a good look. We didn't manage to get up to the lawn, as the steps were too narrow for her walker, and there's no handrail or anything. Mum was satisfied, while out there, that there was nobody there. As soon as she was back in her chair inside (with the blinds closed, as they have been all day, at her insistance) she started again "Well, I'm still convinced there is someone out there! I mean, I can see them!!" etc.

So, we just wait and see, I guess. The phn did say that I shouldn't be too available or too helpful to mum, because I'm just enabling her to think that she's far more capable and managing far better than she really is, which, she said, will make it much more difficult for her to come to accept increasing outside help, or, if it came to it, full time care.

I've been relaxing with a dvd, and a glass of home made wine. I'm always cagey about having a glass of wine, although I'd never have more than one, just in case of mum's alarm going off, because I'm half an hour's drive away. However, hopefully, one glass wouldn't put me over the limit anyway.

 

[Grannie G]

It sounds as if things are heading for a crisis @LadyA , healthwise for you and `carewise` for your mum. It`s such a pity this stage seems to have to be endured.

 

[LadyA]

I had a message from mum's Care Assistant this morning. She said mum was very confused, clearly suffering delirium, told her all about those people outside the window, that she had been terrified all night that they would try and get in, and then tried to go upstairs without using the stairlift! So, I called the gp's office again, and this time, a doctor rang me back immediately. She said to bring mum in and she'll have a look at changing the antibiotic. So, off we went. Mum told her all about the hallucinations. And the doctor said the antibiotic was the same one she was given last time, before her hospital visit, but obviously, it wasn't working. She said the sample showed "multiple, mixed" growth. So, she put her on a much stronger, different antibiotic. She also gave me a letter for the hospital, and told me that if there is no improvement within 48 hours, to bring mum to the hospital. Fingers and toesies crossed!

 

[Canadian Joanne]

Fingers, toes and eyes crossed for you, @LadyA. Seriously, I do hope things go well and the hallucinations stop. Have they suggested any medications for the hallucinations, should they return?

 

[LadyA]

Fingers, toes and eyes crossed for you, @LadyA. Seriously, I do hope things go well and the hallucinations stop. Have they suggested any medications for the hallucinations, should they return?

No. They are convinced they are caused by infections, caused in turn by mum's kidney disease. Who knows where it will all end?!

 

[LadyA]

Hmm. On Thursday, I really thought mum was improving. You could hold a conversation with her that didn't centre around the "people" she could see outside in the garden. In fact, she didn't mention them at all. Yesterday, she didn't mention them either, although she did say "Well, I don't know how it could be that bushes and leaves moving and shadows turn into people in my mind." So, I haven't had to take her to hospital.

Today, however, when I called her, she chatted away about a friend that visited her this morning to tell her of the death of another friend. Not an unexpected death, but the woman was a good friend to mum. At the end of the conversation, mum said "And my 'friends' are still out in the garden, hiding behind the bushes, and looking out at me every time I look out! Looks like they are getting ready for a performance or something, because they are putting on what looks like clown make up."

She's still on antibiotics, quite strong ones. The other times this has happened, I've felt very panic stricken. Wanted to stay with her most of the time, in a way like picking at a scab, I had to keep checking on her. "Is she still seeing them? Are they there now?" Now, though, I'm......I don't know. I feel a bit detached from it. Before, I had felt mean and ungrateful for not wanting to either move in with her or move her out here. But now, detached me just knows that I couldn't. And even if I did move her out, she'd still be alone quite a bit of the time when I'm working or helping with grandchildren. Between dad's illness and William's illness, I feel I missed a lot of my daughter's growing up. I wasn't there for her. Now, I look at my rapidly growing grandchildren, and at myself getting older, and I realise that I just don't want to miss their growing up too because I'm fully occupied with someone's illness, again.

I didn't go in to mum today. I ran to Tesco to get phone credit (bought milk and a sweatshirt, and forgot the credit!) and then straight home, and spent the rest of the day in my "happy place", i.e. scrubbing and cleaning! I'll go in to her tomorrow. Monday is a Bank Holiday here. But for this evening, I plan on putting fruit on to start fermenting for wine, and sitting with a dvd.

 

[TNJJ]

Hmm. On Thursday, I really thought mum was improving. You could hold a conversation with her that didn't centre around the "people" she could see outside in the garden. In fact, she didn't mention them at all. Yesterday, she didn't mention them either, although she did say "Well, I don't know how it could be that bushes and leaves moving and shadows turn into people in my mind." So, I haven't had to take her to hospital.

Today, however, when I called her, she chatted away about a friend that visited her this morning to tell her of the death of another friend. Not an unexpected death, but the woman was a good friend to mum. At the end of the conversation, mum said "And my 'friends' are still out in the garden, hiding behind the bushes, and looking out at me every time I look out! Looks like they are getting ready for a performance or something, because they are putting on what looks like clown make up."

She's still on antibiotics, quite strong ones. The other times this has happened, I've felt very panic stricken. Wanted to stay with her most of the time, in a way like picking at a scab, I had to keep checking on her. "Is she still seeing them? Are they there now?" Now, though, I'm......I don't know. I feel a bit detached from it. Before, I had felt mean and ungrateful for not wanting to either move in with her or move her out here. But now, detached me just knows that I couldn't. And even if I did move her out, she'd still be alone quite a bit of the time when I'm working or helping with grandchildren. Between dad's illness and William's illness, I feel I missed a lot of my daughter's growing up. I wasn't there for her. Now, I look at my rapidly growing grandchildren, and at myself getting older, and I realise that I just don't want to miss their growing up too because I'm fully occupied with someone's illness, again.

I didn't go in to mum today. I ran to Tesco to get phone credit (bought milk and a sweatshirt, and forgot the credit!) and then straight home, and spent the rest of the day in my "happy place", i.e. scrubbing and cleaning! I'll go in to her tomorrow. Monday is a Bank Holiday here. But for this evening, I plan on putting fruit on to start fermenting for wine, and sitting with a dvd.

That sounds like a good idea. My dad suffers from CKD and has hallucinations sometimes. At first I would try and establish what I could do. But now I have accepted it. At 87 he has had a good life and nothing I say or do can change things...
Enjoy your evening ?

 

[LadyA]

Mum finished the antibiotics last night (Monday). Today, for the first time in a couple of weeks, she looked quite relaxed, the curtains were all open, and she was happily watching the quiz shows that she has always loved. Not just watching, she was trying to answer the questions, which she hasn't done for a while. In fact, she hasn't watched tv for a while. She had also taken some care with her clothes this morning, wearing a new top she had been given for her birthday in April, and a coordinating skirt. Mum's always been very style conscious, so it's good to see her taking an interesting in clothes again, and not wearing the same clothes day after day.

I'm a bit concerned that this is the first real improvement we've seen. It took the entire seven days of antibiotics to get this improvement, so I'm a little afraid that to really knock the infection out, she would need another few days of them. I'd hate to see these uti's becoming resistant to this antibiotic too. I spend the afternoon trying to phone her doctor, but couldn't get through. I'll go in to the surgery tomorrow, and ask. And mightn't be any harm to tell them how impossible it is to get through to them!

 

[Grannie G]

It`s unbelievable how much change an infection can affect @LadyA Good to know your mum has taken a turn for the better but still worrying about any future infections.

 

[Canadian Joanne]

I agree with you @LadyA that a few extra days of antibiotics are called for. It's not unusual for 10 to 14 days being prescribed. Bringing it up is a good idea. I hope you got through to them.

 

[LadyA]

She has another three days antibiotic at 1,000mg er day, and then a maintenance dose of 250mg going forward, although the doc said they will have to change the antibiotic every so often. Mum was good today, only as I left she said "You know, I think those people are still out there, but I'm just ignoring them now, they don't seem to be doing any harm. And if I get disturbed by them, then I just shut the curtains."