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Welcome to Talking Point - introduce yourself here

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Wrenjen

Registered User
Jan 3, 2015
1
New Member

Hi, I joined today, and this is my first post so I am new to this.

My mom has mixed Alzheimer's and Vascular, she is living with my sister but we try to share the caring for my mom who has returned from the West indies, 2 months ago. We find it difficult to deal as we both work and have young families. My sister is finding it especially difficult to deal and would appreciate help from anyone who are in similar situation, as moms memories from living and working in the UK and growing up in the West Indies causes her LOTS of confusion, she is 76
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,729
Kent
Hello Wrenjen

Welcome to Talking Point.

I understand the difficulty you are having with your mother`s disorientation. My husband was Indian but left when he was 23 so lived longer in the UK than he had lived in India.

When dementia struck, he thought his Indian family was here, in the UK and continuously went out looking for them.

There was nothing I could do to ease his mind and we lived through a very difficult time.

I wish I could offer advice on dealing with this but sadly all we could do was live through it.
 

hedgerow74

Registered User
Jan 3, 2015
1
Colchester
New member

I've just signed up to the forum and wanted to say 'hello'.

My Granddad (in his mid eighties) has vascular dementia and my Nan (in her early eighties) is currently caring for him. Their 3 children (including my Dad) and their respective partners are all trying to help and, as the eldest of the grand kids who also lives closest, I try and see them as often as possible.

Over the last week or two my Granddad's condition seems to have deteriorated quite quickly and we're all worried this signals the next stage of his condition and fear the impact on my Nan who is struggling to cope emotionally.

I'm hoping that I can try and find some suggestions on the forums that might help my Nan cope with my Granddad's increasingly frequent bouts of disorientation which lead to him demanding she accompany him 'home' when they are already at home (somewhere they've lived together for 8 or 9 years, well before the vascular dementia started).
 

percot

Registered User
Jan 4, 2015
11
Hi. I am so glad I have found this forum.

After Christmas I visited my mother in a care home where she was staying while my sister, who is her carer, was away on holiday. Mum has dementia and I talk to her often on the phone but can only visit three or four times a year because the journey takes all day (7-8hours minimum) and means that I need to stay in hotel at least two nights. She lives with my sister who is the registered tenant of the house.

At first she seemed like the person I speak to on the phone but after a while she started showing more signs of the dementia, for example, telling me that she would be going home tomorrow when my sister comes to get her even though she knew that it would be more than a week until my sister returned from holiday and having told me that earlier on. I realise that she is much worse than I thought because she seems able to hide the symptoms during relatively short phone calls but cannot keep it up in longer visits.

Worse still, I found she had been carrying a box of s**t around in her handbag. I commented on the smell but thought it was just 'care home' smell. Later she told me what it was and asked me to dispose of it because she did not know what to do. She did not know how long she had kept it and would not explain why she had it.

Now my sister has sent me an email telling me that she intends to emigrate to live with her children as soon as she can get a visa. My mother will be homeless because she is not the tenant. She cannot go into a care home because SS say she is just a little forgetful, even though she has a diagnosis of dementia. She does not want to come to live with me and even if she would I could not care for her because I have to work and I look after my grandchildren while their parents work. Without my childcare they would have to stop work. I live in a fairly remote area so there would be long journeys for her to day centres, if there are any places available.

What can I do? It is very hard dealing with this at a distance.
 

jaymor

Volunteer Moderator
Jul 14, 2006
12,816
England
I've just signed up to the forum and wanted to say 'hello'.

My Granddad (in his mid eighties) has vascular dementia and my Nan (in her early eighties) is currently caring for him. Their 3 children (including my Dad) and their respective partners are all trying to help and, as the eldest of the grand kids who also lives closest, I try and see them as often as possible.

Over the last week or two my Granddad's condition seems to have deteriorated quite quickly and we're all worried this signals the next stage of his condition and fear the impact on my Nan who is struggling to cope emotionally.

I'm hoping that I can try and find some suggestions on the forums that might help my Nan cope with my Granddad's increasingly frequent bouts of disorientation which lead to him demanding she accompany him 'home' when they are already at home (somewhere they've lived together for 8 or 9 years, well before the vascular dementia started)
Hello and welcome to TP.

My husband also wanted to go home when he was in his own home, the house he had lived in for 46 years. Telling him it was home was useless so it was a case of little White lies and distraction,

I would say things like it was too late today but we would go tomorrow or we were waiting for a delivery so may be a little later. He was it recognising me as his wife do was always asking when I would be back. So again telling him I would not be long and would he mind helping me wash up, prepare some vegetables, anything to take his mind off his lose of home or wife for a while. It really is a difficult time to deal with and very sad.

Hopefully someone will be along with some suggestions. You will get a good response to any questions you have in the section of the forum headed, I care for someone with dementia.
 

jaymor

Volunteer Moderator
Jul 14, 2006
12,816
England
Hi. I am so glad I have found this forum.

After Christmas I visited my mother in a care home where she was staying while my sister, who is her carer, was away on holiday. Mum has dementia and I talk to her often on the phone but can only visit three or four times a year because the journey takes all day (7-8hours minimum) and means that I need to stay in hotel at least two nights. She lives with my sister who is the registered tenant of the house.

At first she seemed like the person I speak to on the phone but after a while she started showing more signs of the dementia, for example, telling me that she would be going home tomorrow when my sister comes to get her even though she knew that it would be more than a week until my sister returned from holiday and having told me that earlier on. I realise that she is much worse than I thought because she seems able to hide the symptoms during relatively short phone calls but cannot keep it up in longer visits.

Worse still, I found she had been carrying a box of s**t around in her handbag. I commented on the smell but thought it was just 'care home' smell. Later she told me what it was and asked me to dispose of it because she did not know what to do. She did not know how long she had kept it and would not explain why she had it.

Now my sister has sent me an email telling me that she intends to emigrate to live with her children as soon as she can get a visa. My mother will be homeless because she is not the tenant. She cannot go into a care home because SS say she is just a little forgetful, even though she has a diagnosis of dementia. She does not want to come to live with me and even if she would I could not care for her because I have to work and I look after my grandchildren while their parents work. Without my childcare they would have to stop work. I live in a fairly remote area so there would be long journeys for her to day centres, if there are any places available.

What can I do? It is very hard dealing with this at a distance.

Hello and welcome to TP.

What a difficult situation you find yourself in with your Mum.

SS might think she is ok as they know your sister is there with her. When your sister goes and so does the house then it is a different ball game altogether.

You need to advise SS that circumstances are changing and your Mum will not only loose her carer but will technically be made homeless. I am sure that they would not allow her to become homeless but they need to know the circumstances your Mum will find herself having to deal with when she is not capable. You will have to make it clear too that you are not able to take over where your sister leaves off. It will be better to start now so that by the time your sister has everything sorted and is ready to go everything is in place for your Mother's care.

Jay
 

JoInBrumUK

Registered User
Jan 4, 2015
4
Birmingham
Here we go again... and something to share

Just before 08:00 this morning mom calls me - to say the firemen have gone (OMG???). Nothing she is saying makes sense at this stage - random disjointed details - but I get the sense something has actually happened...

Not a good day for this... I've got tonsilitis, a fever, a cough that sounds like a bull walrus and I do not want to risk sharing this infection with my 83 year old mother.

Mom sounds OK physically. Carers will be there in a hour or so. I start making calls...

No - she has not been to A&E.
Yes - the fire brigade did go out at about 03:30... lots of smoke and a burnt out microwave.
Carers' help desk - there has been an incident, I am aware, I will fix it, don't panic when you get there...
My Aunt (the only other member of the family that is functional) - HELP - You can - thank you so much!

The microwave had already been identifed as a risk... damn I should have done this last week... searching the internet for a solution...

Which is when I found the thread in these forums... BUT (and this is part of the reason I've joined) I've found something really useful which I want to share... A device that fits over a plug (not the socket) called Plugblock (the system will not let me add a URL - so you will need to search "Reece Safety" for "Plugblock" via google).

So my aunt has been over with a new microwave, a safety socket cover (for now - I hope mom leaves it alone!) and a bunch of flowers for the neighbour who took mom in and made her a cup of tea at 03:30.

Another "happening" over with - because of course it wasn't mom that did it!

The other part of the reason I've joined is that I'm just so tired of this... nothing I do seems to be enough. It helps to know there are other people out there doing the same things!

Jo x
 
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percot

Registered User
Jan 4, 2015
11
Hello and welcome to TP.

What a difficult situation you find yourself in with your Mum.

SS might think she is ok as they know your sister is there with her. When your sister goes and so does the house then it is a different ball game altogether.

You need to advise SS that circumstances are changing and your Mum will not only loose her carer but will technically be made homeless. I am sure that they would not allow her to become homeless but they need to know the circumstances your Mum will find herself having to deal with when she is not capable. You will have to make it clear too that you are not able to take over where your sister leaves off. It will be better to start now so that by the time your sister has everything sorted and is ready to go everything is in place for your Mother's care.

Jay
Thanks Jay. I have calmed down a bit now. I will be contacting SS as soon as I get home from work tomorrow and will tell my sister to do the same.
 

chris53

Registered User
Nov 9, 2009
2,929
London
Just before 08:00 this morning mom calls me - to say the firemen have gone (OMG???). Nothing she is saying makes sense at this stage - random disjointed details - but I get the sense something has actually happened...

Not a good day for this... I've got tonsilitis, a fever, a cough that sounds like a bull walrus and I do not want to risk sharing this infection with my 83 year old mother.

Mom sounds OK physically. Carers will be there in a hour or so. I start making calls...

No - she has not been to A&E.
Yes - the fire brigade did go out at about 03:30... lots of smoke and a burnt out microwave.
Carers' help desk - there has been an incident, I am aware, I will fix it, don't panic when you get there...
My Aunt (the only other member of the family that is functional) - HELP - You can - thank you so much!

The microwave had already been identifed as a risk... damn I should have done this last week... searching the internet for a solution...

Which is when I found the thread in these forums... BUT (and this is part of the reason I've joined) I've found something really useful which I want to share... A device that fits over a plug (not the socket) called Plugblock (the system will not let me add a URL - so you will need to search "Reece Safety" for "Plugblock" via google).

So my aunt has been over with a new microwave, a safety socket cover (for now - I hope mom leaves it alone!) and a bunch of flowers for the neighbour who took mom in and made her a cup of tea at 03:30.

Another "happening" over with - because of course it wasn't mom that did it!

The other part of the reason I've joined is that I'm just so tired of this... nothing I do seems to be enough. It helps to know there are other people out there doing the same things!

Jo x
Hi Jo, a very warm welcome to you here at Talking Point, you sometimes think..oh gosh when will it end, you try to do the thinking for your loved one and more besides, and then "guilt monster" makes you feel bad because something else happened:eek: the fire service will report this incident to social services (been there...done it with my mum in law) so hopefully they will do a reassessment for any hazards, I guess the care agency are aware of this incident and should have really called you rather then your mum call you ..mum in law set fire to her kitchen bin many times, and after the second time the fire service insisted on a meeting at her home with us and social services, her care agency were aware of these problems and in fact called the fire services out, but did not let us know! we were contacted direct by the fire officers! I hope you start to feel better soon and that you will be offered(and insist) more practical help for mum by SS, try to get an email address from mums case worker, as sometimes ideas offered don't always happen should anyone else take over, so get it in writing. Take care and please do keep posting.
Chris x
 

JoInBrumUK

Registered User
Jan 4, 2015
4
Birmingham
Thanks for the kind words.

You are so right about the guilt monster ;) I just have to keep telling myself that I'm only human!

Keep on keeping on I guess :)
 

niknaknoo

Registered User
Jan 4, 2015
6
Hi, I'm new to TP, my mum was diagnosed with Alzheimer's in September.....not a huge shock to me at all. My father in law lives in a care home and has advanced Alzheimers after being diagnosed about 9 years ago.

I look forward to sharing information and learning more from you all

XxX
 

Cathy*

Registered User
Jan 4, 2015
42
Warwickshire
Just before 08:00 this morning mom calls me - to say the firemen have gone (OMG???). Nothing she is saying makes sense at this stage - random disjointed details - but I get the sense something has actually happened...

Not a good day for this... I've got tonsilitis, a fever, a cough that sounds like a bull walrus and I do not want to risk sharing this infection with my 83 year old mother.

Mom sounds OK physically. Carers will be there in a hour or so. I start making calls...

No - she has not been to A&E.
Yes - the fire brigade did go out at about 03:30... lots of smoke and a burnt out microwave.
Carers' help desk - there has been an incident, I am aware, I will fix it, don't panic when you get there...
My Aunt (the only other member of the family that is functional) - HELP - You can - thank you so much!

The microwave had already been identifed as a risk... damn I should have done this last week... searching the internet for a solution...

Which is when I found the thread in these forums... BUT (and this is part of the reason I've joined) I've found something really useful which I want to share... A device that fits over a plug (not the socket) called Plugblock (the system will not let me add a URL - so you will need to search "Reece Safety" for "Plugblock" via google).

So my aunt has been over with a new microwave, a safety socket cover (for now - I hope mom leaves it alone!) and a bunch of flowers for the neighbour who took mom in and made her a cup of tea at 03:30.

Another "happening" over with - because of course it wasn't mom that did it!

The other part of the reason I've joined is that I'm just so tired of this... nothing I do seems to be enough. It helps to know there are other people out there doing the same things!

Jo x
Hi Jo

It isn't funny but I had to smile it's all so familiar. It doesn't matter how hard you try I think you'll often find yourself dealing with things which you could have done better with the benefit of hindsight, which none of us has so don't beat yourself up.

Take care

Love

Cathy

x
 

jaymor

Volunteer Moderator
Jul 14, 2006
12,816
England
Hi, I'm new to TP, my mum was diagnosed with Alzheimer's in September.....not a huge shock to me at all. My father in law lives in a care home and has advanced Alzheimers after being diagnosed about 9 years ago.

I look forward to sharing information and learning more from you all

XxX
Welcome to TP and you certainly have found the place for sharing and learning but more importantly a place to find friendship and understanding. I look forward to you joining us. Take a look around and post where you feel is appropriate for you, may be the section headed 'I care for someone with dementia. Your posts will be read by many so your questions or your advice will be seen by many.

Jay
 

dancingqueen

Registered User
Jan 8, 2015
1
Bristol
Hello

Hi, I am so pleased to discover Talking Point; it's comforting to know that there are other people I can talk to who will understand the problems of caring for a relative with dementia. My father was diagnosed with vascular dementia in November and we have been shocked by how quickly he has deteriorated since. We originally thought that we would have some time before he really started to show major changes apart from a it of a memory problem, but it seems that we were oh so wrong. He told me today that he got lost on the way back from the post box yesterday (it is only about 100 yards from his door) and he simply didn't know where he was; he walks past people in the street that he has known for years and when they stop to speak to him he responds but as if to a stranger; he needs telephone calls several times a day to remind him to take tablets etc and is mixing up times and days of the week, he is leaving the house before the bus starts to run, eats meals at odd times and has to keep asking what day it is. Although we have had his diagnosis we haven't yet seen his doctor as he was waiting for a report from the memory service. It feels as though we were given the diagnosis from the brain scan but no-one knew quite what to do after that until the memory service had reported. Is this the usual way of doing things? We feel as though we have been left to "make it up as we go". We just need to get organised so we can support dad but we just need a nudge in the right direction. Sorry bit of a long intro - hope I haven't put everyone to sleep! Vickie
 

stanleypj

Registered User
Dec 8, 2011
10,707
North West
Hello dancingqueen and welcome to TP.

I'm afraid that, after several years of reading posts on here, I believe there is no usual way of doing things - there are so many different accounts but it's very common for people to end up feeling as you do.

As for feeling as though you have been left to make it up as you go along, that's not uncommon either! But there's a positive way of looking at this. It tells you, early in the journey, that you are going to need to become the expert in giving your dad the best possible treatment - you will always know more about him, his difficulties and what he can still do than any medic.

By all means ask all the questions you can think of from the memory clinic and anyone else you come into contact with and see whether the answers help you - some will, some won't.:)

Two links that might be helpful:

http://www.dementiauk.org/what-we-do/admiral-nurses/

http://www.alzheimers.org.uk/helpline

But, of course, you can also get amazing support from TP members both as you read and as you post. I'm sure you'll also contribute your own experiences and ideas.

Take care
 

Cathy*

Registered User
Jan 4, 2015
42
Warwickshire
Hi, I am so pleased to discover Talking Point; it's comforting to know that there are other people I can talk to who will understand the problems of caring for a relative with dementia. My father was diagnosed with vascular dementia in November and we have been shocked by how quickly he has deteriorated since. We originally thought that we would have some time before he really started to show major changes apart from a it of a memory problem, but it seems that we were oh so wrong. He told me today that he got lost on the way back from the post box yesterday (it is only about 100 yards from his door) and he simply didn't know where he was; he walks past people in the street that he has known for years and when they stop to speak to him he responds but as if to a stranger; he needs telephone calls several times a day to remind him to take tablets etc and is mixing up times and days of the week, he is leaving the house before the bus starts to run, eats meals at odd times and has to keep asking what day it is. Although we have had his diagnosis we haven't yet seen his doctor as he was waiting for a report from the memory service. It feels as though we were given the diagnosis from the brain scan but no-one knew quite what to do after that until the memory service had reported. Is this the usual way of doing things? We feel as though we have been left to "make it up as we go". We just need to get organised so we can support dad but we just need a nudge in the right direction. Sorry bit of a long intro - hope I haven't put everyone to sleep! Vickie
Hello Vickie.

My dad was our first experience of dementia 20 years ago, followed 10 years later by my FIL and lastly my mum. By the time we were looking after mum we kind of knew what to expect but each experience was unique, the quality and quantity of help varied greatly and we often felt left on our own trying to make the best of things but we also had some amazing help. We didn’t get everything right but we did our best. Some days were better than others, some times of day were better than others it isn’t always just downhill. It can be a bit overwhelming at first especially if you feel at the moment you’ve been dropped a bombshell and abandoned. You have come to the right place for support. Everyone on TP will have had a different experience so there will always be people who have answers for you. Have you had time to ask for a care assessment?
 

val1

Registered User
Jan 11, 2015
7
Just joined

Hello all
My name is Val. I am a live in carer. Since May I have been living with a lady who had a stroke and has been diagnosed with Alzheimer's a few months ago. I sometimes feel very uninformed about things that are happening and have no one here who actually knows much about this. Sometimes I just need to ask a question or two. Sometimes I need a shoulder to cry on after a very sleepless night.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,729
Kent
Hello Val

You sound very isolated. Do you get any support at all or are you on duty 24/7 without any free time?

I suppose it depends on whether you are an agency carer or one employed privately by the lady you are caring for.

Please feel free to ask away if you need to. There is a lot of experience on this Forum and even though no one posts in a professional capacity, many who have cared for years know what it`s about.

Please start your own Thread in the sub forum I care for a person with dementia
which you will find here.
 

lilperson

Registered User
Jan 11, 2015
10
Taunton
Hello

My husband suffers from memory loss, confusion & general lack of interest in anything, this has been gradually coming on for the last 2 or 3 years and it is definitely getting worse. He is getting more grumpy & bad tempered, has to be reminded to shower etc and just sits there staring into space. if it wasn't for the fact that he walks our little dog 3 times a day he would never go out. The worst thing is that he refuses to recognise there is a problem and flatly refuses to see the doctor. Have just been taking things a day at a time but am wondering if anyone has any suggestions for motivating him a bit.
 

Millie51

Registered User
Jan 11, 2015
17
Napier, New Zealand
My First post

Hi everyone :) Just a wee note to introduce myself, I was diagnosed with Early Onset Mixed Dementia (Vascular and Alzheimer's) in January 2014 - just coming up to my 1st anniversary - if you can call it that. A lot has changed in the first year, I'm hoping to learn a lot from everyone else on the forum, mostly some handy tips for the future
 
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