Hi, I've just joined the forum.
I'm struggling with mum's worsening Alzheimer's. She's fairly happy in her own little world, but I struggle with a mixture of frustration, guilt, upset, exasperation, more guilt, I get snitchy when I shouldn't then I feel even worse! I'm an only child & although of course my husband is helpful, I wish I had other family members who I could share this with, but there is nobody on my side of the family.
My mum is 90 & has Alzheimer's. She was diagnosed 3-4 yrs ago, but looking back I can see that she was in early stages a few years before that. Things only became really evident after she moved house (just in the nick of time as it turned out) to live close to us, in a bungalow. As I now realise, change is not a good thing for someone with dementia. Having lived alone in a 3 bed house for many years, after my dad passed away, she was seemingly managing ok, cooking meals, using the washing machine etc, - but she was constantly "searching & searching all day" for various things - for a few years, & hoarding, hiding things.
I was growingly upset & exasperated in equal measures to find that now in her lovely new little bungalow, all logic & understanding had gone out the window. She could not even begin to understand how to use the cooker or washing machine, use the new telephone or adjust the heating dial & all sorts of other things. I covered things in red & green/blue stickers (for stop & start, hot & cold etc). I used to see her 2 or 3 times a week, but since she moved nearby 3 yrs ago, I see her daily - after work & several times a day on my day off / weekends. I noticed she was dressing in a funny old mixture of clothes - a pyjama jacket on top of a back-to-front top, a dress with the neck around her waist, clothes inside out, back-to-front, odd shoes, or one shoe on & one off, or on the wrong feet. She once used a blue pen instead of lipstick - causing much alarm until I realised why her lips were blue! Was throwing toilet paper & panty liners on the floor beside the loo. As she couldn't use the cooker, only the microwave a bit, right from the start I had to take meals round for her. Her appetite was small anyway, but has got increasingly les & less - no longer can she face what I would consider a proper meal - she just lives on biscuits, cakes, tea, hot chocolate (which she can't make herself), yet more biscuits & cakes, mini trifles, apple juice, sponge puddings & she has prescribed Aymes Complete nutritional drinks 2 a day. On a good day, I may tempt her with a TINY toasted cheese /fish finger/chipolata sandwich. She can't eat a sandwich properly any more - she picks it apart like a small toddler. She has seen a dietician at hospital, but there's only so much we can do to boost calories/fat intake.
She is very wobbly & has had several falls & has spent time in hospital 2yrs ago- since when she wears a falls monitor alarm & has carers twice a day & a Zimmer. She can't properly dress or wash herself & going to the toilet is more & more of an issue - almost a fixation now. She isn't as yet incontinent but does wear "paddy pants" just in case. She insists on taking a box of tissues to the loo every time despite me making sure there are always 2 loo rolls on the holder - just can't understand that she doesn't need tissues as well. Also she seems to think the bathroom is a public toilet, & that the flannels, towels, toothbrush etc belong to other people. Try as I might, I can't make her see that it's her own bathroom in her own home & everything in the house is hers.
I've had phone calls at work from her in a state because, for example, she couldn't get the milk back in the fridge, or the door shut, & the milk bottle was very hot - when I went round after work I found she'd been trying to get the kettle in the fridge door, & had sat the kettle in a bowl of cold water!!!! Yikes!!!! I realised she was seeing the white kettle as the milk bottle - so I gave her our black kettle instead & we've got hers (it was ok, no damage).
She has hallucinations - there's always a lady in bed beside her, sometimes the 'lady's daughter' & a man in the bedroom as well. Always in the bedroom & only at night. These imaginary people apparently move clothes & things around too! I know I shouldn't argue with her but it's so exasperating! She also sees bugs all over the carpet & thinks the floors & walls are constantly moving like water. Weird isn't it? Why these hallucinations? You'd think she might see visions of her mother or father, or my dad, but why these random people, & bugs?
She has a tablet-dispensing machine - it's a little round carousel with compartments for the tablets, & a timer which you set for the times it is to & dispense the tablets. Well, this machine she thinks is a living creature! "Mr. Ding" she calls it! It beeps "sings" a tune & red light flashes when the alarm goes off at tablet time. She sits him on her lap, talks to him, covers him up at night, is all the time fretting if he's too hot or if the sunlight is in his little eyes (he has no eyes!). She goes through a laborious ritual of covering things up at night, putting cushions in funny places, then spends all day moving things around or says "I've been searching & searching all day" for whatever it happens to be, so every time I go round I spend hours hunting for this or that e.g. for the TV remote control - I often find it in one of her bedroom drawers, in the bed, under the bed, in the bathroom or in her bag! She denies moving things, blaming it on one of the carers, or 'the lady'.
More recently she has started responding to people on TV thinking they are real people in the room talking directly to her. She tells me to "shhhhhh" in case the "people in the other room" hear! We go in & check the lounge & I tell her they're not actually in the room just on the TV screen, she says "oh yes I know that" then in the next breath reverts back to responding to what they are saying.
Mum also now has frequent episodes of anxiety & complete disorientation in the early hours. She gets very upset, doesn't know who or where she is, had a terrible feeling she can't explain & gets herself in an awful. She can't get herself together enough to phone me, or even think to press her pendant or wrist button to call the Careline for help - they would ring me & I'd go round if she did. Also had some recent outbursts of anger & a tantrum the other day. Every day she says the carer hasn't been, she hasn't had her tablets - but I check & yes they have - she remembers other things but strangely doesn't remember the carer coming in the mornings.
Sorry - a long essay I know, but it helps me to put it down in words. This is all I suppose fairly harmless stuff, some people have to contend with anger & resentment all the time, or their parent not knowing who they are, & much more difficult things. But I do struggle with how I feel & how I cope. I try to do as much as I can for her, buy her nice things, reassure her & not get cross, but sometimes I do get so exasperated & I'm upset seeing my mum turning into a small child. When I had to break the news 2 yrs ago that I had breast cancer & had to have a mastectomy, chemo & radiotherapy - all she said was "what a nuisance"!. She would never have reacted like that in the past. I don't think she understood what I was going through, as her old self would have been very upset & concerned. I suppose it was a good thing because it meant she wasn't worrying about me.
I want her to stay safe & well & do as much as I can for her.
I'll keep my future posts short I promise! Just needed to offload! It will be so helpful to read & share other people's experiences & coping strategies.
Fiona
I'm struggling with mum's worsening Alzheimer's. She's fairly happy in her own little world, but I struggle with a mixture of frustration, guilt, upset, exasperation, more guilt, I get snitchy when I shouldn't then I feel even worse! I'm an only child & although of course my husband is helpful, I wish I had other family members who I could share this with, but there is nobody on my side of the family.
My mum is 90 & has Alzheimer's. She was diagnosed 3-4 yrs ago, but looking back I can see that she was in early stages a few years before that. Things only became really evident after she moved house (just in the nick of time as it turned out) to live close to us, in a bungalow. As I now realise, change is not a good thing for someone with dementia. Having lived alone in a 3 bed house for many years, after my dad passed away, she was seemingly managing ok, cooking meals, using the washing machine etc, - but she was constantly "searching & searching all day" for various things - for a few years, & hoarding, hiding things.
I was growingly upset & exasperated in equal measures to find that now in her lovely new little bungalow, all logic & understanding had gone out the window. She could not even begin to understand how to use the cooker or washing machine, use the new telephone or adjust the heating dial & all sorts of other things. I covered things in red & green/blue stickers (for stop & start, hot & cold etc). I used to see her 2 or 3 times a week, but since she moved nearby 3 yrs ago, I see her daily - after work & several times a day on my day off / weekends. I noticed she was dressing in a funny old mixture of clothes - a pyjama jacket on top of a back-to-front top, a dress with the neck around her waist, clothes inside out, back-to-front, odd shoes, or one shoe on & one off, or on the wrong feet. She once used a blue pen instead of lipstick - causing much alarm until I realised why her lips were blue! Was throwing toilet paper & panty liners on the floor beside the loo. As she couldn't use the cooker, only the microwave a bit, right from the start I had to take meals round for her. Her appetite was small anyway, but has got increasingly les & less - no longer can she face what I would consider a proper meal - she just lives on biscuits, cakes, tea, hot chocolate (which she can't make herself), yet more biscuits & cakes, mini trifles, apple juice, sponge puddings & she has prescribed Aymes Complete nutritional drinks 2 a day. On a good day, I may tempt her with a TINY toasted cheese /fish finger/chipolata sandwich. She can't eat a sandwich properly any more - she picks it apart like a small toddler. She has seen a dietician at hospital, but there's only so much we can do to boost calories/fat intake.
She is very wobbly & has had several falls & has spent time in hospital 2yrs ago- since when she wears a falls monitor alarm & has carers twice a day & a Zimmer. She can't properly dress or wash herself & going to the toilet is more & more of an issue - almost a fixation now. She isn't as yet incontinent but does wear "paddy pants" just in case. She insists on taking a box of tissues to the loo every time despite me making sure there are always 2 loo rolls on the holder - just can't understand that she doesn't need tissues as well. Also she seems to think the bathroom is a public toilet, & that the flannels, towels, toothbrush etc belong to other people. Try as I might, I can't make her see that it's her own bathroom in her own home & everything in the house is hers.
I've had phone calls at work from her in a state because, for example, she couldn't get the milk back in the fridge, or the door shut, & the milk bottle was very hot - when I went round after work I found she'd been trying to get the kettle in the fridge door, & had sat the kettle in a bowl of cold water!!!! Yikes!!!! I realised she was seeing the white kettle as the milk bottle - so I gave her our black kettle instead & we've got hers (it was ok, no damage).
She has hallucinations - there's always a lady in bed beside her, sometimes the 'lady's daughter' & a man in the bedroom as well. Always in the bedroom & only at night. These imaginary people apparently move clothes & things around too! I know I shouldn't argue with her but it's so exasperating! She also sees bugs all over the carpet & thinks the floors & walls are constantly moving like water. Weird isn't it? Why these hallucinations? You'd think she might see visions of her mother or father, or my dad, but why these random people, & bugs?
She has a tablet-dispensing machine - it's a little round carousel with compartments for the tablets, & a timer which you set for the times it is to & dispense the tablets. Well, this machine she thinks is a living creature! "Mr. Ding" she calls it! It beeps "sings" a tune & red light flashes when the alarm goes off at tablet time. She sits him on her lap, talks to him, covers him up at night, is all the time fretting if he's too hot or if the sunlight is in his little eyes (he has no eyes!). She goes through a laborious ritual of covering things up at night, putting cushions in funny places, then spends all day moving things around or says "I've been searching & searching all day" for whatever it happens to be, so every time I go round I spend hours hunting for this or that e.g. for the TV remote control - I often find it in one of her bedroom drawers, in the bed, under the bed, in the bathroom or in her bag! She denies moving things, blaming it on one of the carers, or 'the lady'.
More recently she has started responding to people on TV thinking they are real people in the room talking directly to her. She tells me to "shhhhhh" in case the "people in the other room" hear! We go in & check the lounge & I tell her they're not actually in the room just on the TV screen, she says "oh yes I know that" then in the next breath reverts back to responding to what they are saying.
Mum also now has frequent episodes of anxiety & complete disorientation in the early hours. She gets very upset, doesn't know who or where she is, had a terrible feeling she can't explain & gets herself in an awful. She can't get herself together enough to phone me, or even think to press her pendant or wrist button to call the Careline for help - they would ring me & I'd go round if she did. Also had some recent outbursts of anger & a tantrum the other day. Every day she says the carer hasn't been, she hasn't had her tablets - but I check & yes they have - she remembers other things but strangely doesn't remember the carer coming in the mornings.
Sorry - a long essay I know, but it helps me to put it down in words. This is all I suppose fairly harmless stuff, some people have to contend with anger & resentment all the time, or their parent not knowing who they are, & much more difficult things. But I do struggle with how I feel & how I cope. I try to do as much as I can for her, buy her nice things, reassure her & not get cross, but sometimes I do get so exasperated & I'm upset seeing my mum turning into a small child. When I had to break the news 2 yrs ago that I had breast cancer & had to have a mastectomy, chemo & radiotherapy - all she said was "what a nuisance"!. She would never have reacted like that in the past. I don't think she understood what I was going through, as her old self would have been very upset & concerned. I suppose it was a good thing because it meant she wasn't worrying about me.
I want her to stay safe & well & do as much as I can for her.
I'll keep my future posts short I promise! Just needed to offload! It will be so helpful to read & share other people's experiences & coping strategies.
Fiona
