We are still awaiting an official diagnosis but my mum isn't my mum however I feel like I am the only one who sees this. Since coming home form hospital 5 weeks ago she has changed so much. She is quite capable of doing things but won't....she doesn' eat but tells people she does, she is fixated on her bowels and constantly says she cant eat because food goes straight through her or she has diarrhea so can't eat, she tells SS that she eats every couple of hours because she is so hungry but we ll know she hasn't eaten anything, she hasn't brushed her teeth once since being home, yet when the care manager or OT are there she puts on such an amazing act. She always had sunday lunch out with myself and her grandsons but won't come out anymore saying she will once her bowels are better...........She has turned against me saying I am trying to put her in a home when I am actually the one trying desperately to get the right care to keep her in her own home.....she won't answer the phone anymore when people call yet was able to make a call last week to her solicitor saying I was keeping her prisoner in her own home and wanted to put her away......my brother is currently over from Texas and he knows it is not her but keeps implying she will get better.........I feel like I am going mad and I am the only on who recognises what is happening.....it is as if she has been rebooted!!! Aaarrgghh I feel like I am already grieving for my lovely mum........
Won't come out with us or answer the phone anymore
- Thread starter Braemar
- Start date
Sounds as though you and your mum are having a really awful time, I am so sorry.
The eating problem sounds as though it could be her memory, she thinks she has eaten, genuinely believes it - so imagine how annoying it must be to have someone tell you that you haven't eaten when you 'KNOW' that you have! It is such a difficult situation. The only way we got around it was by eating together every evening and my mum was lucky enough to go to a lunch club most days. If she ate with people then the problem didn't happen.
However the bowel problem is whole other scenario. I was speaking to a lady the other day who genuinely had a bowel problem when she ate and she had made herself so frightened that she wouldn't leave her room. The only solution was a medicinal one and GP directed. I'm guessing it is a bit difficult for you to tell whether she did have a bowel problem and it has frightened her so now she is associating or that she genuinely does have one. I would suggest seeing the continence nurse - a referral either through your gp or google continence advice nhs and your area and go direct to them and speak to them and ask for an appointment. This might help and it might also reassure your mum
it is really scary for people with memory issues - everything is really scary - and sometimes they are just relying on 'feelings'. Whatever she is doing she really isn't doing to hurt you, she can't help it. There are usually solutions and compromises. My Mum insisted I was trying to put her in a home for the last two years of her life when I was practically killing myself protecting her to make sure that is what didn't happen but she was so terrified of going into a home that she could only express it in fear that I was going to make her go. It was awful and I really sympathise but she doesn't hate you, in her fear she is pushing every boundary.
she might be finding it difficult to answer the phone for so many reasons, not least that she may be aware that she isn't going to remember who it is on the phone. I think the phone is a scary instrument for people with dementia, no face to face, relying on remembering a voice and often being expected to remember the last conversation with no visual clues. Really difficult. in the end we removed mum's (not suggesting that is what you do) because she just couldn't handle it all.
I've wittered on but there are a few suggestions in all that wittering, others will be along soon. I'm sending you a big hug, everything changes with dementia but we still have our memories xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
The eating problem sounds as though it could be her memory, she thinks she has eaten, genuinely believes it - so imagine how annoying it must be to have someone tell you that you haven't eaten when you 'KNOW' that you have! It is such a difficult situation. The only way we got around it was by eating together every evening and my mum was lucky enough to go to a lunch club most days. If she ate with people then the problem didn't happen.
However the bowel problem is whole other scenario. I was speaking to a lady the other day who genuinely had a bowel problem when she ate and she had made herself so frightened that she wouldn't leave her room. The only solution was a medicinal one and GP directed. I'm guessing it is a bit difficult for you to tell whether she did have a bowel problem and it has frightened her so now she is associating or that she genuinely does have one. I would suggest seeing the continence nurse - a referral either through your gp or google continence advice nhs and your area and go direct to them and speak to them and ask for an appointment. This might help and it might also reassure your mum
it is really scary for people with memory issues - everything is really scary - and sometimes they are just relying on 'feelings'. Whatever she is doing she really isn't doing to hurt you, she can't help it. There are usually solutions and compromises. My Mum insisted I was trying to put her in a home for the last two years of her life when I was practically killing myself protecting her to make sure that is what didn't happen but she was so terrified of going into a home that she could only express it in fear that I was going to make her go. It was awful and I really sympathise but she doesn't hate you, in her fear she is pushing every boundary.
she might be finding it difficult to answer the phone for so many reasons, not least that she may be aware that she isn't going to remember who it is on the phone. I think the phone is a scary instrument for people with dementia, no face to face, relying on remembering a voice and often being expected to remember the last conversation with no visual clues. Really difficult. in the end we removed mum's (not suggesting that is what you do) because she just couldn't handle it all.
I've wittered on but there are a few suggestions in all that wittering, others will be along soon. I'm sending you a big hug, everything changes with dementia but we still have our memories xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Just a thought - did she have a care plan when she came out of hospital and did it include a proper assessment - perhaps if not you could get SS to do an assessment and see if she could go to day care/lunch club especially if she is at home on her own all day?
Thank you
Thank you for your response, advice and support it is very much appreciated. I think the most frustrating part is other people and friends who only see her now and then saying how well she is and she will no doubt soon be better....and I'm thinking she is wearing a nappy all the time, won't go out the house for fear of being stared at (that is the latest excuse), sits on an incontinence bed liner, can't remember what she had for breakfast.......what part of this don't they understand...then I start thinking is it just me!!!...personally I don't need an official diagnosis I know my mum and I know I have now lost a part of her it is just proving ery diifuclt to get private cre now as her NHS care package is coming to an end and she is self funding.......much love and big hugs back to you and your family xxxx
Thank you for your response, advice and support it is very much appreciated. I think the most frustrating part is other people and friends who only see her now and then saying how well she is and she will no doubt soon be better....and I'm thinking she is wearing a nappy all the time, won't go out the house for fear of being stared at (that is the latest excuse), sits on an incontinence bed liner, can't remember what she had for breakfast.......what part of this don't they understand...then I start thinking is it just me!!!...personally I don't need an official diagnosis I know my mum and I know I have now lost a part of her it is just proving ery diifuclt to get private cre now as her NHS care package is coming to an end and she is self funding.......much love and big hugs back to you and your family xxxx
Hi Fizzie
Yes she has a SS care package which ends very soon and we are struggling to get private carers now as she will be self funding. She has been referred to the memory clinic but they have a waiting and don't think they will be able to see her until January!!! That's if we can get mum to go.......I've spoken to Age UK about going to a day centre but again not sue i she would actually go, se say she would give it a try but so far she won't come out with family so not sue she would get on a bus or in a taxi with people she doesn't know......she is not on her own se has a very good network of friends, I have set up for her haridresser to visit weekly, the gardener always as a cuppa and a chat, she has a cleaner/homehelp and friend who is currently there almost everyday. She is still very well physically but mentally wont do anything, prefers now to be waited on, seriously not my mum of old!!! She won't even brush her teeth although says she does!!! From what I have read it looks as if things will only get worse all round as well so I best buckle my seat belt!! Thank you againxxx
Yes she has a SS care package which ends very soon and we are struggling to get private carers now as she will be self funding. She has been referred to the memory clinic but they have a waiting and don't think they will be able to see her until January!!! That's if we can get mum to go.......I've spoken to Age UK about going to a day centre but again not sue i she would actually go, se say she would give it a try but so far she won't come out with family so not sue she would get on a bus or in a taxi with people she doesn't know......she is not on her own se has a very good network of friends, I have set up for her haridresser to visit weekly, the gardener always as a cuppa and a chat, she has a cleaner/homehelp and friend who is currently there almost everyday. She is still very well physically but mentally wont do anything, prefers now to be waited on, seriously not my mum of old!!! She won't even brush her teeth although says she does!!! From what I have read it looks as if things will only get worse all round as well so I best buckle my seat belt!! Thank you againxxx
My OH has been eating less and less over the last few weeks . This morning when I gave him breakfast he said he wasn't hungry. He must have been he only has salad and salmon at 7.00 last night. So I took it away and put it in the fridge . It was granola, ginger yoghurt and warm berries. A few minuits later i took it from the fridge halved the amount and gave it to him again, here's your breakfast. He took if from me , ate it and then had the other half. But I really do not think his brain is getting the I am hungry message. So I think it will be small steps.
Hi Braemar
My dad had a care package put together after a hospital stay - and after the initial 6 weeks enablement carers he too was self-funding - however the LA suggested we choose from a couple of care agencies on their books - the advantage was that agreeing to one of these meant that the LA brokered the 'contract' and dad therefore paid their rate rather than a higher rate if we'd organised something ourselves. (This was a while ago, so things may have changed).
Maybe ask whether your LA has any such arrangement.
Best wishes
My dad had a care package put together after a hospital stay - and after the initial 6 weeks enablement carers he too was self-funding - however the LA suggested we choose from a couple of care agencies on their books - the advantage was that agreeing to one of these meant that the LA brokered the 'contract' and dad therefore paid their rate rather than a higher rate if we'd organised something ourselves. (This was a while ago, so things may have changed).
Maybe ask whether your LA has any such arrangement.
Best wishes
The 'unknown' can be frightening.
Many people with dementia can't form a mental picture, or draw on a memory of going to places, even somewhere that they visit on a regular basis. So it is easier not to go, and to stay in the place where they are.
Many people with dementia can't form a mental picture, or draw on a memory of going to places, even somewhere that they visit on a regular basis. So it is easier not to go, and to stay in the place where they are.
This is very difficult for you
My dear, this behaviour you're seeing in your mother is all due to her dementia. Your brother is wrong and is obviously in denial.
Your mother is doing her best. Try to hold on to that notion. People with dementia genuinely believe what they say to other people, because they can't actually remember what has really happened.
Your mum is afraid to go out. This is normal in most people with dementia, so don't make her go out. Try your best NOT to ask questions - imagine if you had no memory and people kept asking you things - you'd soon be very angry and upset.
When you're not there, she manages to work out that her solicitor might be able to help her, so she decides to phone her/him.
Answering the phone? No way! People on the other end will ASK QUESTIONS and your mum knows that she won't be able to answer, so she avoids it. In any case, it might be YOU, checking up on her...........
The reality of dementia and how it affects people comes as a shock to people as they watch their loved ones suddenly change. It isn't just memory loss - it is BRAIN FAILURE. Your mum can't remember whether she ate or not - so she tells you and others that she has, because she knows that's the answer you want to hear. You're wasting your time even asking. A better idea is to arrive, cook something and say "I've made this - I wondered if you'd like some?" If she's hungry, she'll eat. If she's angry with you, she'll tell you she's already eaten. so all you do is leave her portion on the table and calmly eat yours. When she realises that you're not challenging her, she will probably approach the table and join you. When she does, don't comment. She's now in a chaotic world which makes no sense to her whatsoever.
My thoughts are that you need a 24 hour carer for her. Also, go to youtube and look at Teepa Snow's videos on dementia. And read Knickers in the Fridge by Jane Grierson to get an idea of how Jane helped her mother, who had dementia.
I wouldn't bother arguing with your brother, either. When the diagnosis comes, just let him know. And stay in touch with us here because we know where you're coming from, darling.
My dear, this behaviour you're seeing in your mother is all due to her dementia. Your brother is wrong and is obviously in denial.
Your mother is doing her best. Try to hold on to that notion. People with dementia genuinely believe what they say to other people, because they can't actually remember what has really happened.
Your mum is afraid to go out. This is normal in most people with dementia, so don't make her go out. Try your best NOT to ask questions - imagine if you had no memory and people kept asking you things - you'd soon be very angry and upset.
When you're not there, she manages to work out that her solicitor might be able to help her, so she decides to phone her/him.
Answering the phone? No way! People on the other end will ASK QUESTIONS and your mum knows that she won't be able to answer, so she avoids it. In any case, it might be YOU, checking up on her...........
The reality of dementia and how it affects people comes as a shock to people as they watch their loved ones suddenly change. It isn't just memory loss - it is BRAIN FAILURE. Your mum can't remember whether she ate or not - so she tells you and others that she has, because she knows that's the answer you want to hear. You're wasting your time even asking. A better idea is to arrive, cook something and say "I've made this - I wondered if you'd like some?" If she's hungry, she'll eat. If she's angry with you, she'll tell you she's already eaten. so all you do is leave her portion on the table and calmly eat yours. When she realises that you're not challenging her, she will probably approach the table and join you. When she does, don't comment. She's now in a chaotic world which makes no sense to her whatsoever.
My thoughts are that you need a 24 hour carer for her. Also, go to youtube and look at Teepa Snow's videos on dementia. And read Knickers in the Fridge by Jane Grierson to get an idea of how Jane helped her mother, who had dementia.
I wouldn't bother arguing with your brother, either. When the diagnosis comes, just let him know. And stay in touch with us here because we know where you're coming from, darling.
Being waited on?
Your mum isn't enjoying being waited on! She truly can't do the things she used to do any more, so she lets other people do them.
Think about this.........you want a jam sandwich. First, you have to find the kitchen. When you get there you have to remember why you went to the kitchen in the first place. if you manage to remember, you look in every cupboard to find a plate, a knife, the butter and the jam. That's four things to find. In the middle of looking for the knife you open the wrong cupboard and there's a vase there! You immediately think that you were going to arrange some flowers, so off you go with the vase.....but on the way to wherever you were going with the vase, you realise you need the loo. You put the vase down on the bottom stair. You search for the loo. You enter the kitchen again, by mistake. You see the jam is on the table. You are puzzled. You were expecting to see the toilet, not the kitchen - and who's been messing about in your kitchen, taking out jam?????? You retreat, mightily confused, and have another go at finding the loo. You notice the vase on the bottom stair. WHAT??? Who has done this? Was there a burglar????? You pick up the vase, unsure what to do with it. The phone rings. you jump in alarm - it might be the burglar!!! So you ignore it, and wander back to the sitting room, where you place the vase on the sofa. You are weary. You think you might like a jam sandwich, so you try to find the kitchen................do you see where this is going? This is the demented mind, working incorrectly. So it's MUCH easier to let others provide meals and cups of tea. You don't want to even THINK about how hard it was to make the jam sandwich or find the loo - never mind worrying about the reason why the vase is on the sofa...........
Your mum isn't enjoying being waited on! She truly can't do the things she used to do any more, so she lets other people do them.
Think about this.........you want a jam sandwich. First, you have to find the kitchen. When you get there you have to remember why you went to the kitchen in the first place. if you manage to remember, you look in every cupboard to find a plate, a knife, the butter and the jam. That's four things to find. In the middle of looking for the knife you open the wrong cupboard and there's a vase there! You immediately think that you were going to arrange some flowers, so off you go with the vase.....but on the way to wherever you were going with the vase, you realise you need the loo. You put the vase down on the bottom stair. You search for the loo. You enter the kitchen again, by mistake. You see the jam is on the table. You are puzzled. You were expecting to see the toilet, not the kitchen - and who's been messing about in your kitchen, taking out jam?????? You retreat, mightily confused, and have another go at finding the loo. You notice the vase on the bottom stair. WHAT??? Who has done this? Was there a burglar????? You pick up the vase, unsure what to do with it. The phone rings. you jump in alarm - it might be the burglar!!! So you ignore it, and wander back to the sitting room, where you place the vase on the sofa. You are weary. You think you might like a jam sandwich, so you try to find the kitchen................do you see where this is going? This is the demented mind, working incorrectly. So it's MUCH easier to let others provide meals and cups of tea. You don't want to even THINK about how hard it was to make the jam sandwich or find the loo - never mind worrying about the reason why the vase is on the sofa...........
Have you tried a magic pill?...
Assuming your Mum can take paracetamol, give her one tablet and say that it's a trial pill and that one dose can stop the trots for a day. If it works it's magic and if it doesn't well....it was only a trial!!
I am presuming that she does not actually have a bowel problem.
My MIL had Diverticular Disease and her illness did actually cause similar problems....Buy some Pullup type incontinence pants,.... and tell her that they are designed for ladies with just her problem.
If she will go to the hairdressers, can you go out with her and say..."We need to pop to such and such I want some whatever", just to prolong to trip, finish it with a cream cake or bacon butty in a cafe and you might just give her something to look forward to, rather than her dwelling on her fears..
Sorry...the are just ramblings from someone who is past this stage now.
Assuming your Mum can take paracetamol, give her one tablet and say that it's a trial pill and that one dose can stop the trots for a day. If it works it's magic and if it doesn't well....it was only a trial!!I am presuming that she does not actually have a bowel problem.
My MIL had Diverticular Disease and her illness did actually cause similar problems....Buy some Pullup type incontinence pants,.... and tell her that they are designed for ladies with just her problem.
If she will go to the hairdressers, can you go out with her and say..."We need to pop to such and such I want some whatever", just to prolong to trip, finish it with a cream cake or bacon butty in a cafe and you might just give her something to look forward to, rather than her dwelling on her fears..
Sorry...the are just ramblings from someone who is past this stage now.
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