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Hello again. :(

LadyA

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Oct 19, 2009
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Twice already I've had to give mum an extra dose though. Yesterday, she was getting quite agitated about the intruders, (although she says there aren't as many of them), and wouldn't accept that there really wasn't anyone under the tv unit (a space of about 1 1/2 inches). I couldn't stay with her very long. I'm just not able to deal with it. I got so depressed about it all yesterday, and started having palpitations. However, today is a new day, and we hope for the best. I'm going out for a walk with my grandson after checking on mum, so I better scoot!
 

Grannie G

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I got so depressed about it all yesterday, and started having palpitations.

This isn`t good @LadyA and I`m sure you don`t need me to tell you it should not be ignored.

Please get some medical advice and who knows, it might lead to some support for your mum.
 

LadyA

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Oct 19, 2009
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Well, yesterday didn't go according to original plan, and I didn't get in to mum until evening. Just one of those days.

I always find this time of year extremely difficult and can become depressed. Facing into the coldest time of year, it's dark, the weather is foul, etc. Hoping for better days ahead!
 

LadyA

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Oct 19, 2009
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Fingers and toesies crossed. Two days now, with no mention of her "visitors". In fact, on Monday morning, mum was sort of complaining that she couldn't see any of them! It was like "I am sure they must be there, but I haven't seen a sign of anyone!" And we had a very stormy night over the weekend, and mum said she didn't sleep well because of the noise of the wind. Not, as before, the noise of the men in the attic hammering and sawing, trying to get in the house. So, it's looking hopeful that the quetiapine is working.
 

Grannie G

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Everything crossed for you and your mum @LadyA I`ve never heard of anyone having such logical memory of hallucinations once they have faded away.
 

LadyA

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Oct 19, 2009
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Everything crossed for you and your mum @LadyA I`ve never heard of anyone having such logical memory of hallucinations once they have faded away.
It is weird. Although I remember William, when his hallucinations were finally controlled, saying one day "Whatever happened to those others that used to be here? Haven't seen them in a while."

Mum went two days without mentioning the intruders at all. Today, was the third day, and there was just one, slight, kind of jokey reference to them. She said something about nobody in the garden, and said "I suppose they must all be in here." but she was laughing, and it was obvious that she couldn't actually see them.

It's such a huge relief, Sylvia, I can't tell you! I'm hoping that my own anxiety and stress levels will start to get better now too. Otherwise, I will have to go to the doctor about it.
 

LadyA

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Oct 19, 2009
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So, mum was doing really well since New Year. Rarely a mention of "the intruders". Taking an interest in things again, enjoying looking out at her garden, and generally much more relaxed. It was clear that the increased dose of quetiapine was having a good affect.

Until yesterday. I went in in the morning, and knew by the sound of her greeting that something wasn't right. She sounded weak, exhausted. She said she was exhausted, because she never slept all night, because of "all those people and animals and things" running across her bedroom ceiling. And she continued to talk about them all morning. They were in the (switched off) tv, etc.

I gave her one of the extra half doses yesterday morning. When I went back to her in the afternoon, she was sleeping in her chair. Quite groggy when she woke up. So, I hope she slept last night.

I'm collecting a urine sample this morning and taking it to the gp this morning before going to work.
 

LadyA

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It does seem like one step forward one step back @LadyA Very worrying for you.
It's so hard when you don't know what to expect from one day to the next. This morning when I went in, she seemed very much better. Tired still, but no mention of the hallucinatory images. Very odd. I think you really start to understand what you are up against, when you hear yourself saying "I really hope she has an infection." :rolleyes:
 

LadyA

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Oct 19, 2009
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Another little update. Mum did, indeed, have an infection in the last urine sample. Her gp phoned her with the result, and mum said that he said "if it seems to be asymptomatic, there's no need to treat it, as it's just a slight infection."
Seriously! Why did he think I sent in a sample? I'm sure mum assured him she had no symptoms, because in her mind, if she doesn't have stinging or burning or pain, she has no symptoms. And he's supposed to ring me and not mum.
Anyway, after several more days with mum's hallucinations becoming, again, her sole topic of conversation, I rang the Clinic in the hospital who had prescribed the quetiapine. They were a bit incredulous, and said "But, if her hallucinations are increasing, then that's NOT asymptomatic!" I had also phoned and left a message for the gp, and they prescribed an antibiotic. Within days, mum had calmed down again. The hallucinations are still there, she says, but they aren't taking over her life right now. Maybe she needs a slightly increased dose of quetiapine.

I have noticed a bit of a deterioration in her memory etc. since Christmas. She's a bit more vague, especially on the phone, which she sometimes doesn't answer at all, because she forgets how. She occasionally was forgetting to take her medication and sometimes taking it but dropping some and not realising. So now, I'm in every evening to make sure she has taken it successfully, and in on the mornings that the Care Assistant isn't there too, to make sure she takes it. She's on so much medication for various health issues.

So, that's where we are now. The quetiapine is definitely having a beneficial effect, but maybe not quite as good as I'd hoped, so far anyway. But of course, this latest infection would have affected that. Mum has serious kidney/bladder problems, and I suppose UTIs will be an ever present feature for her.
 

Grannie G

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Apr 3, 2006
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It`s so frustrating when you are expected to be both carer and diagnostician @LadyA I hope the level of care you are providing will not affect your own health.
 

LadyA

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Oct 19, 2009
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It`s so frustrating when you are expected to be both carer and diagnostician @LadyA I hope the level of care you are providing will not affect your own health.
At least I'm not on my own with it this time. My brothers, sisters in law and their adult children are all doing what they can. But they do all work full time and several are doing shift work, so it's not as easy for them to fit things around their work as their "off" time wouldn't regularly be at suitable times for going in to mum.
 

LadyA

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Oct 19, 2009
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Since I last posted, mum has had two falls (that we know of). The first one, she told me about, but said that she got up herself, and wasn't hurt at all. The second one, we're not sure what happened or exactly when. Mum's care assistant contacted me one morning, and said that mum had told her she was feeling a "bit shaken" because she had just fallen a few minutes before the carer arrived. However, she had told my sister in law that she had fallen on the previous evening. I think the previous day would be the more likely time, because that day, by the time I got in in the morning, mum had taken her medication already. The wrong tablets, as it turned out. She had taken her night time tablets, which includes the Quetiapine, which makes her sleepy. So, she had a full dose the night before, and another full dose that morning. She was very sleepy. I would think that's why she fell.

She assured everyone that she was fine, not in the least hurt. But I found two bad scrapes, one on each shin, which needed dressing. Mum had no memory of how she got them. They looked extremely inflamed, and when I sent pics to the doctor, she was prescribed another antibiotic. She's fine now. Although she's being treated for another slight pressure sore.

Not sure where this is all going. I'm in twice a day to see to medication, and, in the evening, just spending an hour or two chatting, watching tv with her, which seems to help orient and settle her. I also take her to all her appointments, get her shopping, etc. Between my daughter, brothers, sisters in law and nieces, mum has an average of 4 or 5 visits a day, every day. We really can't do any more, but it doesn't seem enough. Mum tells me that she really hates being by herself at all.

The hallucinations are still there, but mostly don't seem to be bothering her at all. The doctors say that with her medical conditions and the amount of medication she's already on, and her risk of falling, they really don't want to increase the anti psychotic unless it's absolutely necessary, as she does not seem distressed or frightened by them. I, on the other hand, get quite distressed by them, with so many very traumatic memories of my husband's horrific journey through dementia. 😓

Mum's memory is deteriorating, noticeably, but yet, she still is very sharp in most ways, and certainly, her capacity to make her own decisions is still there. So, I guess, we continue on as we are, for now. My personal feeling is that mum will need full time care, but she's not ready for that. I feel that, dementia apart, her medical conditions will ultimately need full time care of qualified staff. I also think she would benefit from the company, the structure and routine of full time care, and the confidence having qualified staff on hand would give her. However, for the moment, we will plod on. Certainly, now, with lockdowns and no visits, staff shortages because of covid, etc. , it really isn't the time for anyone to have to go into full time care.
 

Sarasa

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Apr 13, 2018
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Good to hear your update @LadyA. At the moment it seems you and the family have everything pretty much under control at the moment. Do you have a care home in mind for when it is needed? It might be worth getting that all sorted now, just in case you need to move your mother a bit more quickly than you think.
 

Grannie G

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Apr 3, 2006
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Being alone when sense of time is compromised is difficult @LadyA even with so much support.

I hope you will be able to come to a decision. I know it isn`t easy. xx
 

LadyA

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Oct 19, 2009
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Ireland
Being alone when sense of time is compromised is difficult @LadyA even with so much support.

I hope you will be able to come to a decision. I know it isn`t easy. xx
We've got her three "dementia clocks", which tells the time, day, date, and whether its morning, afternoon, evening or night. One for her kitchen, living room and bedroom. They are helping for now - but of course, the person does have to remember to look at them!
 

LadyA

Registered User
Oct 19, 2009
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Ireland
Another month has gone by. Mum had another visit to the Age Related clinic a couple of weeks ago. I have to be honest, when they gently asked mum about the people, animals etc. that she had been seeing, I was absolutely horrified at her response! She told the doctors all about the "visitors" who are no longer in the garden, but are in the house, all the time. What they are doing, where they are hiding, etc. She hadn't mentioned them to us at all, and we thought the meds had been working really well! I will say, she hasn't been distressed or seemed frightened by them recently, and, because I can't cope with the hallucinations, if mum didn't mention them, I certainly haven't asked about them.

The upshot was that they doubled the quetiapine and started her on Memantine. I suspect that even with the doubled dose, the "visitors" are still there, but I'm not enquiring. Mum appears relaxed enough. I have, however, noticed a deterioration in her memory. Saturday, in the space of about an hour or so, she must have asked me about Easter 8 or 9 times: "When is Easter? It must be soon." Yes, mum, it's actually tomorrow. ........."Easter must be coming up, is it?" It is, mum. Tomorrow is Easter Sunday..........."Is Easter coming up soon? It's usually around this time of year, isn't it?" Yes, mum. It's tomorrow. etc. etc. etc.

This morning, it was "Did you get the shopping?" No, mum, I'll be getting it tomorrow. "Oh! I thought you'd have gotten it, with it being the end of the week." I usually get it on Tuesday, Mum. Today is Monday, and it's a Bank Holiday. etc.

And every evening when I get in there at around 5.30, it's "I can't find my tablets, for my night tablets" . No, mum. It's way too early to take them yet. If you take them now, you will fall asleep in your chair, and could then wake in the middle of the night. "Oh, I wasn't going to take them. I was only going to get them ready." Right.
I give her the tablets before I go home, at around 7.30 to 8 o'clock.

She's in good form, and you can hold a fairly good conversation with her. But, yeah, there is very noticeable deterioration. She's due back to the Clinic in about July.

She got her vaccination though! No side effects at all. Except, she told me, that her arm is a "bit sore. If I search for the injection site, and poke at it. " But other than that, no reactions, which is great, because a niece was vaccinated because of her job, and she was really ill for a couple of days!

ps. The Clinic said that mum scored 17 on the MMSE that day. Her score in November was 19, and in September was 20. And apparently, mum was diagnosed with Alzheimer's in Aug 2019, while she was in hospital after a fall.
 

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