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Mum diagnosed with Alzheimer’s

BevGB

New member
Jul 5, 2020
2
I am new to this forum and struggling to deal with my mums diagnosis and hallucinations. Before the lockdown mum was coping fairly well, living on her own at the age of 90 with help from myself, her only child, and my husband. She heard voices mostly concerning a young boy who was in love with her and she wasn’t too distressed so we went along with the story. She became Increasingly distressed as she heard more voices, some quite unpleasant and created a whole story to explain them all, involving the boy and the horrible aunts who looked after him and his awful friends. They started to threaten her at night and she would ring the police and myself. She was referred to the mental health team who have tried different medications which haven’t helped much yet. She has some terrible days and nights now with hardly any sleep because she is so afraid and then sleeps really well as she is so exhausted and seems almost normal again until the whole process starts again.
We got some carers to come in to help her and us but this seems to have made her more afraid as she thinks they are part of the bad gang of awful friends and are trying to rob her especially as they have to wear masks at the moment.
She has now been taken to hospital as she refused to take her medication and food or drink as she thought the carers and ourselves were trying to poison her and started throwing things around. They thought she might have a urine infection.
She doesn’t have an infection and has now had a couple of good nights sleep so the hospital are talking about sending her home. I’m really worried as I don’t know how we are going to cope now. My husband is 77 and I have a neurological condition and I’m scared for the future. This all seems to have happened so quickly.
 

karaokePete

Registered User
Jul 23, 2017
5,554
N Ireland
Hello @BevGB and welcome to the forum.

My experience with my wife's dementia is that it can take a while for the medics to find the right meds so I would stick at that. Keep a record of everything so that nothing is missed when you talk to them.

Please keep posting as you will get understanding and support from our experienced membership.
 

Fiona F

Registered User
Apr 12, 2020
33
56
Southampton
I am new to this forum and struggling to deal with my mums diagnosis and hallucinations. Before the lockdown mum was coping fairly well, living on her own at the age of 90 with help from myself, her only child, and my husband. She heard voices mostly concerning a young boy who was in love with her and she wasn’t too distressed so we went along with the story. She became Increasingly distressed as she heard more voices, some quite unpleasant and created a whole story to explain them all, involving the boy and the horrible aunts who looked after him and his awful friends. They started to threaten her at night and she would ring the police and myself. She was referred to the mental health team who have tried different medications which haven’t helped much yet. She has some terrible days and nights now with hardly any sleep because she is so afraid and then sleeps really well as she is so exhausted and seems almost normal again until the whole process starts again.
We got some carers to come in to help her and us but this seems to have made her more afraid as she thinks they are part of the bad gang of awful friends and are trying to rob her especially as they have to wear masks at the moment.
She has now been taken to hospital as she refused to take her medication and food or drink as she thought the carers and ourselves were trying to poison her and started throwing things around. They thought she might have a urine infection.
She doesn’t have an infection and has now had a couple of good nights sleep so the hospital are talking about sending her home. I’m really worried as I don’t know how we are going to cope now. My husband is 77 and I have a neurological condition and I’m scared for the future. This all seems to have happened so quickly.

Hello, I'm so glad you found this forum - it's invaluable.

I'm sorry you're having such a bad time - I totally sympathise. The paranoia must be awful to deal with.

My mum is also 90 & I'm also an only child. Mum lives alone in a bungalow just behind our house. She has Alzheimer's (probably Lewy Body as well). She does now have carers twice a day, but as an only child all the responsibility falls on me. My husband does help when required, mainly with the admin side of things (we have POA) or if something needs fixing in her house.

I'm at my wits end with these hallucinations - they just get worse & are making her life a misery (& mine!).

She has terrible visual & auditory hallucinations which are steadily getting worse & worse. They began when she moved to the bungalow a few years ago - starting with a lady in her bed at night pushing her over to the edge of the bed, then it increased to 'the lady's daughter' & a man in the bedroom, then a group of people in the bedroom making sarcastic remarks at her, 2 children in the lounge, 2 old ladies in the lounge or conservatory, 4 kids in the bedroom making fun of her at night & their faces morphing into scary masks, & the latest is a crowd of people every day outside her lounge window who make a terrible noise all day shouting about, playing loud music & jeering at her.

Like your mum, mine is often too scared to go to bed because of all the people making fun of her, & it's obvious she hasn't slept in the bed, but stayed on the sofa. She has recently been put on Memantine tablets - the GP is tweaking the dose because a whole 10mg tablet made her even more wobbly than usual. A half tablet seems better in as much as she has some better sleeps - as long as she actually gets to bed & settles down, but then has episodes of great distress, upset & disorientation when she wakes up. But it hasn't helped at all with the hallucinations. Unfortunately as far as I understand it, anti-psychotic drugs that can help with hallucinations can't be used in certain types of dementia.

She believes her tablet-dispensing machine is a living animal & spends hours at night trying to get him settled before she can get to bed! She has 'him' on her lap, talks to him, strokes him & says he's scared of her handbag because she once dropped it on him! She also sees bugs scooting about on the carpet, & sometimes moving floors. I've stopped her having the TV on because she thinks people on TV are all the time talking to her, making nasty comments & driving her mad. She just has radio on now (or I put a CD of wartime music on for a while).

It's all very distressing & infuriating in equal measures & this is when I wish I had brothers & sisters! I'm getting very stressed out so I think I'm going to have to add another care visit in every day - she's much better if she's not alone. An afternoon visit just for the company might help.

Good luck with your mum & look after yourselves.
 

BevGB

New member
Jul 5, 2020
2
Hello, I'm so glad you found this forum - it's invaluable.

I'm sorry you're having such a bad time - I totally sympathise. The paranoia must be awful to deal with.

My mum is also 90 & I'm also an only child. Mum lives alone in a bungalow just behind our house. She has Alzheimer's (probably Lewy Body as well). She does now have carers twice a day, but as an only child all the responsibility falls on me. My husband does help when required, mainly with the admin side of things (we have POA) or if something needs fixing in her house.

I'm at my wits end with these hallucinations - they just get worse & are making her life a misery (& mine!).

She has terrible visual & auditory hallucinations which are steadily getting worse & worse. They began when she moved to the bungalow a few years ago - starting with a lady in her bed at night pushing her over to the edge of the bed, then it increased to 'the lady's daughter' & a man in the bedroom, then a group of people in the bedroom making sarcastic remarks at her, 2 children in the lounge, 2 old ladies in the lounge or conservatory, 4 kids in the bedroom making fun of her at night & their faces morphing into scary masks, & the latest is a crowd of people every day outside her lounge window who make a terrible noise all day shouting about, playing loud music & jeering at her.

Like your mum, mine is often too scared to go to bed because of all the people making fun of her, & it's obvious she hasn't slept in the bed, but stayed on the sofa. She has recently been put on Memantine tablets - the GP is tweaking the dose because a whole 10mg tablet made her even more wobbly than usual. A half tablet seems better in as much as she has some better sleeps - as long as she actually gets to bed & settles down, but then has episodes of great distress, upset & disorientation when she wakes up. But it hasn't helped at all with the hallucinations. Unfortunately as far as I understand it, anti-psychotic drugs that can help with hallucinations can't be used in certain types of dementia.

She believes her tablet-dispensing machine is a living animal & spends hours at night trying to get him settled before she can get to bed! She has 'him' on her lap, talks to him, strokes him & says he's scared of her handbag because she once dropped it on him! She also sees bugs scooting about on the carpet, & sometimes moving floors. I've stopped her having the TV on because she thinks people on TV are all the time talking to her, making nasty comments & driving her mad. She just has radio on now (or I put a CD of wartime music on for a while).

It's all very distressing & infuriating in equal measures & this is when I wish I had brothers & sisters! I'm getting very stressed out so I think I'm going Drink down to have to add another care visit in every day - she's much better if she's not alone. An afternoon visit just for the company might help.

Good luck with your mum & look after yourselves.
Hi @Fiona F
Many thanks for your reply. I wasn’t sure how to reply so I think I’ve quoted your post too many times! Your situation sounds so like mine. My mum has been put on memantine also but the 10mg dose seemed too much as she became very sleepy and hardly able to walk. The mental health team have now tried to put her on an antipsychotic also but that’s when she became very paranoid and refused all meds, food and drink so was taken to hospital. My mum also started to sleep on the sofa instead of her bed as she was so scared of the whole gang outside also playing music and shouting.
We bought her a dementia cat for her 90th birthday which helped to calm her down a bit as she could stroke it and it would miaow and purr and gave her some company although she couldn’t understand why it didn’t need to eat or drink.
It’s so hard being the only one isn’t it. You never get a break. Mum managed to phone me from hospital in the evening and wanted me to get the police, meet her at the bottom of the stairs and rescue the whole ward who are being held hostage. It was difficult to calm her down and I couldn’t really get to speak to anyone as they were trying to do their handover to the night staff. I think we’ll try to arrange some respite care for her when she comes out but it’s all so difficult at the moment with the virus and I’m not sure whether anyone will take her or whether we will be able to visit.
Im also worried about my husband as he is getting very forgetful. I’m hoping it’s just stress as I’m doing really silly things at the moment and forgetting what I’m doing.
I hope you manage to get some more help with your mum. It’s reassuring to know I’m not the only one going through this, especially as your situation sounds so similar.
 

Fiona F

Registered User
Apr 12, 2020
33
56
Southampton
Hi @Fiona F
Many thanks for your reply. I wasn’t sure how to reply so I think I’ve quoted your post too many times! Your situation sounds so like mine. My mum has been put on memantine also but the 10mg dose seemed too much as she became very sleepy and hardly able to walk. The mental health team have now tried to put her on an antipsychotic also but that’s when she became very paranoid and refused all meds, food and drink so was taken to hospital. My mum also started to sleep on the sofa instead of her bed as she was so scared of the whole gang outside also playing music and shouting.
We bought her a dementia cat for her 90th birthday which helped to calm her down a bit as she could stroke it and it would miaow and purr and gave her some company although she couldn’t understand why it didn’t need to eat or drink.
It’s so hard being the only one isn’t it. You never get a break. Mum managed to phone me from hospital in the evening and wanted me to get the police, meet her at the bottom of the stairs and rescue the whole ward who are being held hostage. It was difficult to calm her down and I couldn’t really get to speak to anyone as they were trying to do their handover to the night staff. I think we’ll try to arrange some respite care for her when she comes out but it’s all so difficult at the moment with the virus and I’m not sure whether anyone will take her or whether we will be able to visit.
Im also worried about my husband as he is getting very forgetful. I’m hoping it’s just stress as I’m doing really silly things at the moment and forgetting what I’m doing.
I hope you manage to get some more help with your mum. It’s reassuring to know I’m not the only one going through this, especially as your situation sounds so similar.


Thank you for replying - yes it's so reassuring to know there's someone else in such a similar situation isn't it.
It is very hard being an only child - such a huge responsibility.

I'm 56 (I can't believe it - surely I'm only 23!!! LOL) , married & we don't have children - we never wanted them.
My mother-in-law died a year ago, with dementia, but it was very different, a gentle decline into immobility, incontinence & basically losing the will to live - but my husband has 2 brothers & a sister, plus their dad & his 2nd wife. She had a live-in carer for the last year of her life.
My husband had POA & took over her admin & made changes in her home like putting a bath in downstairs & bringing her bed down. Of course it was stressful, hard work & time consuming for him, but he was at least able to share the responsibility, decisions & visits with the family.

He is supportive of course, but hardly ever comes round with me to see her unless I ask. I find it less stressful if he comes with me & mum is more lucid if anyone visits - maybe she puts on an extra effort for a while. He never sees her in the variety of awful states of distress I do, or talking all the nonsense about people, children, bugs, & talking to her tablet machine etc. I might have a look at the dementia cat - sounds like a good idea. But she'd say the same about what to give it to eat & drink - she already keeps on about her tablet machine "Mr Ding" asking what "these little animals" eat & drink? I did buy her a battery-operated hamster that repeats what you say in a squeaky little voice & his head bobs up & down! It's quite funny but I can't leave it switched on all the time because any noise in the vicinity is repeated so it gets annoying. She thinks it's amazing how clever he is! Like "Mr Ding", the hamster also has a bed so sleep in (actually a doll's bed my granny made for me when I was a child).

My life is like 'Groundhog Day'! I get home from work about 6-ish, catch my breath for a while then go round to see mum - I say to myself "here we go again" & take a deep breath before I go in, dreading what's happened today, what mess I will find & what strange mixture of clothes/pyjamas she's wearing.
I shouldn't feel like that but it does get very frustrating & stressful, hearing about what all the assorted "people" have been doing & saying all day. Strange how your mum also saw a group of noisy people outside - it's so weird - I wonder why? Hallucinations of random people, children, bugs are common - it's odd that the brain conjours up these things. My mum misses my dad dreadfully - he died 20 years ago, & misses her parents terribly. It's such a shame that my mum doesn't see my dad or her parents in these hallucinations - but no, it's always random strangers & they are always jeering, making fun of her & driving her mad. So strange what the brain can do.

I hope your husband is ok & you too, & hope you can put it down to stress. Maybe both of you should see your GP?

Good luck, all the best
Fiona