New Member - Advice Please!

[Fiona71]

Hello everyone. I am in desperate need of some advice. I have been visiting this site for several months but this is the first time I have posted as today I am at my wits end.

I’m 35 and am my mum is 77. She has been having memory problems for probably about a couple of years however in April this year she became very confused. She was completely muddled about what day of the week she was on, misplacing things constantly and generally confused. Then she rang me at work to say that she couldn’t find the dog. That’s when I knew there was something really wrong as the dog died at Christmas. To cut a long story short I called the doctor out who asked her the usual questions etc. She was completely muddled and confused and they realised this (ie she was thinking it was September when it was April and thinking it was 1972 etc and couldn’t remember the dog having died) The doctor recommended she be referred to a specialist. (which turns out now she wasn’t)

Since then I have moved back in with her and have noticed quite a big deterioration. She is constantly muddled, misplaces everything and then spends ages wandering round looking for it, never knows what day it is (despite having a calendar which she tries to write things on and checks all the time), is missing appointments/meeting friends (although she hardly seems to go out now) she is also beginning to confuse night and day (ie she was up having breakfast at 10.20pm one night as she thought it was 10.20am and she had slept in). She also thinks that clocks don’t work and is constantly checking them and buying alarm clocks and then throwing them away because she says they don’t work. She is also going to the shops every day and buying mountains of food (ie stacks of cakes and biscuits) and then keeping food that is months out of date and gone off. She also doesn’t seem to be able to understand the concept of a phone anymore in that she never makes calls and never answers it and has lost interest in watching the TV which she used to love. Her short term memory is terrible but she is speaking more and more about things in her past like her parents (who are both dead). She can’t seem to do simple tasks now even making a cup of coffee (yesterday she was drinking coffee in a mug which was mixed with vegetable soup??). She is also obsessed with sending off these claim forms which claim you have won large sums of money (which she hasn’t and we have told her) but it seems to me that she is sending off several a day with sums of money attached. She is constantly ordering things out of catalogues which she doesn’t need and then when they arrive doesn’t even remember ordering them. All she seems to do is sit in her room and fill out these claims/catalogue order forms. She also sits in her room and has full conversations – I don’t know who to. She thinks her husband died "about two years ago" - it was actually sixteen years ago.

However last night I came home to find her more confused than ever. Because the garage door had been left open and the back door unlocked she is now saying that “something spooky is happening here” and saying that “someone has been in the house when she was out and taking things”. I then asked her for the key to lock the back door and of course then she couldn’t find her handbag. Finally I found it sitting by the toilet (!). Of course she denied ever having put it there so therefore this only made her more convinced someone had been in the house. She then started to get boxes of old cutlery out of the cabinet (which hasn’t seen the light of day for about 20 years) and started talking to herself counting it all and rearranging it all over and over to check “that someone hadn’t been tampering with it”. However the most worrying thing was that she couldn’t seem to get her words out and her speech was all jumbled.

This morning she was no better and again no idea what day it was or where she was meant to be…….this time couldn’t find her contact lenses (which she can’t see much at all without) and was in an agitated state and very confused but then when I tried to help started telling me to get out of her house and just leave her and stop interfering (which she does quite often).

So today I called the GP’s surgery first thing when I got to work as obviously I was so concerned and told them of the situation and asked if someone could make a home visit. The GP (duty one I think) has just called me back to say that my mum seems perfectly well (?!), answered all his questions correctly and that there was nothing to worry about?!! I explained that I have voiced my concerns several times but he said that he didn’t think it warranted any further tests and if it happened again just to “reassure her”!

I am her only family here and although my partner is being very supportive (we have only been together eight months so early days for us) I now feel I have no one to turn to. I can’t just let the situation go on like this as I can’t be there all the time and I think it is getting to the stage where she could have an accident/wander off/hurt herself in the house. The doctor today seemingly has done no tests or anything. Surely the dr should realise that if it is dementia she could have perfectly lucid moments at times (which she does). She can be fine for a couple of days and then be totally confused/disorientated.

So my first question is (and having researched this site I presume it is) I gather these are definitely most probably symptoms of some kind of dementia? And secondly, where on earth do I go from here to make someone listen to me and get some help for my mum.

Thanks in advance! Sorry for the long post.

Fiona

 

[sue38]

Hi Fiona,

Welcome to TP.

As you will know if you have been visiting the site for a while, we are none of us experts but the behaviour you describe is certainly consistent with dementia.

The misplacing things, the confusion over day and night, the inability to do carry out simple tasks are all things that I identify with. My Dad who is 82 was diagosed with AD and Vascular dementia in December last year and one of the first things that should have alerted us was that he too started to believe that he had won a fortune on the hungarian or whatever lottery and started to send out money.

I can't understand why the GP is refusing to refer your Mum for further treatment when you were originally told that this was what would happen.

I would ask for an appointment for you to talk with the GP as a matter of urgency and write a list of your concerns (much as you have done here) and take it with you.

Most of us have seen our loved ones 'putting on a show' for the professionals, but you need to get the truth across to them and demand that she had be seen by a specialist.

Good luck and let us know how you get on.

 

[Kate P]

Hi Fiona,

I'm sorry you're having a difficult time.

No one on here is a medical professional and so can't tell you anything for sure but it certainly sounds like a lot of the behaviour my mum exhibits.

All I can advise is to keep on pressurising - ask for second opinions and don't worry about making yourself unpopular - it has to be done for your mum's sake and for yours.

We had to go down this route as we were told mum was fine, then depressed and one idiot claimed it to be "some sort of block"

It's difficult and bloody frustrating (excuse the language - it could have been much worse!) but it needs to be done.

All you can do in the meantime is to support your mum, reassure her as best you can and take care of yourself as well!

Thinking of you.

Kate P
XXX

 

[Lynne]

Couldn't you just strangle some 'professionals' ?!!

Fiona, I would ask for your Mum to be referred immediately to a geriatrician for a MMSE test as you fear she is becoming a danger to herself when left alone. Don't mince words or soften the situation, tell it as you have told it to us.

I would deliver a letter (keep a copy) to your mum's regular GP - not the dopey locum - and make it clear that if you don't get a prompt response you WILL take it further. Bear in mind that Mum's GP may be unaware of the unhelpful visit (or was it just a phone call to Mum?) so don't go for the throat too hard until you know. Give YOUR contact telephone number (my Mum sounds perfectly normal & lucid on the phone too!) for them to respond to.

Good luck, & please keep us posted when you have time, as your experience may help someone else in the same situation.

 

[alfjess]

Hello everyone. I am in desperate need of some advice. I have been visiting this site for several months but this is the first time I have posted as today I am at my wits end.

I’m 35 and am my mum is 77. She has been having memory problems for probably about a couple of years however in April this year she became very confused. She was completely muddled about what day of the week she was on, misplacing things constantly and generally confused. Then she rang me at work to say that she couldn’t find the dog. That’s when I knew there was something really wrong as the dog died at Christmas. To cut a long story short I called the doctor out who asked her the usual questions etc. She was completely muddled and confused and they realised this (ie she was thinking it was September when it was April and thinking it was 1972 etc and couldn’t remember the dog having died) The doctor recommended she be referred to a specialist. (which turns out now she wasn’t)

Since then I have moved back in with her and have noticed quite a big deterioration. She is constantly muddled, misplaces everything and then spends ages wandering round looking for it, never knows what day it is (despite having a calendar which she tries to write things on and checks all the time), is missing appointments/meeting friends (although she hardly seems to go out now) she is also beginning to confuse night and day (ie she was up having breakfast at 10.20pm one night as she thought it was 10.20am and she had slept in). She also thinks that clocks don’t work and is constantly checking them and buying alarm clocks and then throwing them away because she says they don’t work. She is also going to the shops every day and buying mountains of food (ie stacks of cakes and biscuits) and then keeping food that is months out of date and gone off. She also doesn’t seem to be able to understand the concept of a phone anymore in that she never makes calls and never answers it and has lost interest in watching the TV which she used to love. Her short term memory is terrible but she is speaking more and more about things in her past like her parents (who are both dead). She can’t seem to do simple tasks now even making a cup of coffee (yesterday she was drinking coffee in a mug which was mixed with vegetable soup??). She is also obsessed with sending off these claim forms which claim you have won large sums of money (which she hasn’t and we have told her) but it seems to me that she is sending off several a day with sums of money attached. She is constantly ordering things out of catalogues which she doesn’t need and then when they arrive doesn’t even remember ordering them. All she seems to do is sit in her room and fill out these claims/catalogue order forms. She also sits in her room and has full conversations – I don’t know who to. She thinks her husband died "about two years ago" - it was actually sixteen years ago.

However last night I came home to find her more confused than ever. Because the garage door had been left open and the back door unlocked she is now saying that “something spooky is happening here” and saying that “someone has been in the house when she was out and taking things”. I then asked her for the key to lock the back door and of course then she couldn’t find her handbag. Finally I found it sitting by the toilet (!). Of course she denied ever having put it there so therefore this only made her more convinced someone had been in the house. She then started to get boxes of old cutlery out of the cabinet (which hasn’t seen the light of day for about 20 years) and started talking to herself counting it all and rearranging it all over and over to check “that someone hadn’t been tampering with it”. However the most worrying thing was that she couldn’t seem to get her words out and her speech was all jumbled.

This morning she was no better and again no idea what day it was or where she was meant to be…….this time couldn’t find her contact lenses (which she can’t see much at all without) and was in an agitated state and very confused but then when I tried to help started telling me to get out of her house and just leave her and stop interfering (which she does quite often).

Hi Fiona

You could have been writing about my Mum, a few years ago, who does have dementia.

Insist that your GP, refers your Mum to a Phyco-Geriatric (SP) Consultant.

It is everyone's right to be refered to a Consultant, if only to rule out dementia.

Take care
Alfjess

 

[Nell]

Dear Fiona,
I'm so sorry to hear about your Mum. She really DOES need help. What idiots some so-called "health professionals" can be!

I suggest you do exactly as others have said - if you can't get to see her GP, ask for another one (not the one she has seen!). Could I suggest you print off your thread and take it with you? I cannot believe anyone could read it and still think there was nothing wrong!!

Most of us on TP are not health professionals, and I think we are all very careful not to offer "medical" solutions or suggestions without also saying "please consult your doctor". But we do find (as with every profession) that doctors vary from useless to marvellous. I hope you get a "marvellous" one next time!!

Most of us have seen our loved ones 'putting on a show' for the professionals, but you need to get the truth across to them and demand that she had be seen by a specialist. This is so true - but you'd think any genuine medical professional would know this and see past it.

Sadly, you may have to be really PUSHY and forceful to get the help for your Mum that she needs. It shouldn't be the case, but it often ends up this way.

I hope your partner is loving and supportive - explain what is happening to keep him "in the loop", but also have quality time together as a couple.

Thinking of you and sending caring wishes your way.

 

[Margaret W]

Wow this is ME!

Oh I went through the same with mum. I took her to the doctor four times for one of those mental tests, and she scored well every time. They sat up and took notice when she rang the surgery to ask for a doctor to come and visit her very sick husband - he had been dead for 3 years. At that point the Consultant Psychiatrist was involved. But she decided mum had possibly early stage dementia and she would see her again in 4 months. A month later, a little old lady is reported to the police at the bottom of her road. No idea who reported her, but it was clearly my mum. She could have been mugged, she could have been lost, she could have been anything. As it was, she came home again.

Don't take No for an answer, insist on a full psychiatrict assessment. Point out to them how your mother is. Fight for it. It was only cos the Police got involved that my mum got attention.

Keep at it.

But for that kind person at the bottom of my mum's road, she might not be with us now.

She is now in a home, doesn't know why she is there, denies going out at night (we have since learned of several occasions when she was).

Good luck

Margaret

 

[elaineo2]

a difficult situation as everyone has said.I and my mum had these problems with dad.His G.P offerred to listen to my concerns but said they could not comment through confidentiality laws.Fair enough.She did advise me to put my concerns in a letter wherby she would read it and act on it.result being,dad was at a routine injection appointment and the G.P di d a mini mental test whilst he was there.We are now awaiting a domicillary visit from consultant.Its worth a try.love elainex

 

[Jilly88]

Fiona.. About 2 years ago my aunt went through the same things... sending off these 'YOU HAVE WON' scams that come through the post, she insists that everything has been stolen (by me usually), her short term memory is shot to pieces yet she can fool the doctors with these tests because her long term memory is not too bad, she screams at the top of her voice, yet is SO polite and calm when the doctor or Vicar calls, yet within minutes of them leaving she starts screaming again. The Doctors just laugh at it and say it's her 'bizarre personallity' but I think I know more about Alzheimer's than they do!!

In the last few months she has become weaker and the shouting is not so piercing, she eats very little now, she can't run around the house as quickly, so she is deteriorating. I think everying you've written in your letter is something that we as carers have all had to endure, so you are certainly not alone.
Try to remember her as she was and have patience (not easy) as she really doesn't remember what she's done or said. Count to ten then go and have a walk round the garden to cool off. Sadly it will get worse, but DO insist on getting another Doctor to do an assessment.
Take it easy.
With love
Jilly

 

[Mameeskye]

Hi Fiona

This was the stage we were at with my Mum about 5 years ago now. We could not get her GP to listen to us as Mum always presented well at the surgery and had anaemia which the Gp put her very mild confusion down to. She did the mini tests on Mum and they were fine.

We were shocked and wrote a letter to the GP. In your case I think that you should just print off your first post. Immediately upon receipt she called and said that she would refer my Mum to the psycho geriatrician but refused to get the consultant to come for a home visit (some piece of paper that the GP has to fill out in our area!!) eventhough the OT the consultant put in for assessment recommended this as well.

Luckily we got Mum to the local psychiatric hospital for her appointment and after a CAT scan got her formal diagnosis 3 months later.

I was shocked at her initial lack of care from her GPs and continue to be shocked at how little care the medical services have shown her since she went into the Nursing Home. It is unfortunate but you really have to fight them at times to get a diagnosis.

Good Luck

(((((hugs))))))

Mameeskye

 

[Fiona71]

Hi everyone

Sorry for taking a few days to post again but this is the first chance I have had to get on a pc.

Anyway thank you all for your advice and opinions on my situation – it seems that a lot of you have gone through the difficulties of getting their GPs to take notice.

Lynne……the GP actually made a home visit to my mum and then phoned me to say he had found nothing wrong. I almost got the impression he thought I was wasting his time. (even though back in April it was recommended she saw a specialist by another doctor).

Nell/Mameeskye – good idea about printing off my thread/post which I am going to do and take it along to my mum’s own GP. He is away on holiday until next week but myself and my partner are going to make an appointment with him and have it all down in black and white – hopefully then it will be taken seriously.

In the last few days my mum isn’t so confused as she was last week but still terrible short term memory and seems to forget anything the minute you have said it to her. Also I am noticing that she seems to be rather “dazed” and if I try to put the TV on for instance for her she is just in her own little word kind of staring into space and doesn’t make much conversation at all (which she used to do). I work full time (not through choice!) so obviously am out all day so you can imagine how worried I am with her being at home on her own. She has also lost so much weight - but I think this is down to her forgetting to eat. If it wasn't for me preparing and putting something to eat in front of her I don't think she would bother.

Again thanks for all your kind words and advice……I shall keep you posted on what happens with the GP….fingers crossed for me!

Fiona xxx

 

[Helena]

Fiona

I firmly believe you will find your Mother has Vascular Dementia

You describe the same scenario we had with my Mother over at least 5 years before she died last year

Several phone calls to GPs got me nowhere just like you simply because on a Good Day they are perfectly OK and can answer all the questions on bad days they simply cant but cleverly they either go to bed /dont go out or miss appointments etc on those days yet will swear black was white was purple they simply overslept or a myriad of other excuses

Watch out for bills not being paid , cant be bothered replies etc

do ensure an EPA is in place because it wont be long and you will need it

 

[dolly gee]

Hello everyone. I am in desperate need of some advice. I have been visiting this site for several months but this is the first time I have posted as today I am at my wits end.

I’m 35 and am my mum is 77. She has been having memory problems for probably about a couple of years however in April this year she became very confused. She was completely muddled about what day of the week she was on, misplacing things constantly and generally confused. Then she rang me at work to say that she couldn’t find the dog. That’s when I knew there was something really wrong as the dog died at Christmas. To cut a long story short I called the doctor out who asked her the usual questions etc. She was completely muddled and confused and they realised this (ie she was thinking it was September when it was April and thinking it was 1972 etc and couldn’t remember the dog having died) The doctor recommended she be referred to a specialist. (which turns out now she wasn’t)

Since then I have moved back in with her and have noticed quite a big deterioration. She is constantly muddled, misplaces everything and then spends ages wandering round looking for it, never knows what day it is (despite having a calendar which she tries to write things on and checks all the time), is missing appointments/meeting friends (although she hardly seems to go out now) she is also beginning to confuse night and day (ie she was up having breakfast at 10.20pm one night as she thought it was 10.20am and she had slept in). She also thinks that clocks don’t work and is constantly checking them and buying alarm clocks and then throwing them away because she says they don’t work. She is also going to the shops every day and buying mountains of food (ie stacks of cakes and biscuits) and then keeping food that is months out of date and gone off. She also doesn’t seem to be able to understand the concept of a phone anymore in that she never makes calls and never answers it and has lost interest in watching the TV which she used to love. Her short term memory is terrible but she is speaking more and more about things in her past like her parents (who are both dead). She can’t seem to do simple tasks now even making a cup of coffee (yesterday she was drinking coffee in a mug which was mixed with vegetable soup??). She is also obsessed with sending off these claim forms which claim you have won large sums of money (which she hasn’t and we have told her) but it seems to me that she is sending off several a day with sums of money attached. She is constantly ordering things out of catalogues which she doesn’t need and then when they arrive doesn’t even remember ordering them. All she seems to do is sit in her room and fill out these claims/catalogue order forms. She also sits in her room and has full conversations – I don’t know who to. She thinks her husband died "about two years ago" - it was actually sixteen years ago.

However last night I came home to find her more confused than ever. Because the garage door had been left open and the back door unlocked she is now saying that “something spooky is happening here” and saying that “someone has been in the house when she was out and taking things”. I then asked her for the key to lock the back door and of course then she couldn’t find her handbag. Finally I found it sitting by the toilet (!). Of course she denied ever having put it there so therefore this only made her more convinced someone had been in the house. She then started to get boxes of old cutlery out of the cabinet (which hasn’t seen the light of day for about 20 years) and started talking to herself counting it all and rearranging it all over and over to check “that someone hadn’t been tampering with it”. However the most worrying thing was that she couldn’t seem to get her words out and her speech was all jumbled.

This morning she was no better and again no idea what day it was or where she was meant to be…….this time couldn’t find her contact lenses (which she can’t see much at all without) and was in an agitated state and very confused but then when I tried to help started telling me to get out of her house and just leave her and stop interfering (which she does quite often).

So today I called the GP’s surgery first thing when I got to work as obviously I was so concerned and told them of the situation and asked if someone could make a home visit. The GP (duty one I think) has just called me back to say that my mum seems perfectly well (?!), answered all his questions correctly and that there was nothing to worry about?!! I explained that I have voiced my concerns several times but he said that he didn’t think it warranted any further tests and if it happened again just to “reassure her”!

I am her only family here and although my partner is being very supportive (we have only been together eight months so early days for us) I now feel I have no one to turn to. I can’t just let the situation go on like this as I can’t be there all the time and I think it is getting to the stage where she could have an accident/wander off/hurt herself in the house. The doctor today seemingly has done no tests or anything. Surely the dr should realise that if it is dementia she could have perfectly lucid moments at times (which she does). She can be fine for a couple of days and then be totally confused/disorientated.

So my first question is (and having researched this site I presume it is) I gather these are definitely most probably symptoms of some kind of dementia? And secondly, where on earth do I go from here to make someone listen to me and get some help for my mum.

Thanks in advance! Sorry for the long post.

Fiona

fiona i have read your message and my heart goes out to you i seally know what it is like but i am soure you will get the help you need ,iam realy sorry for your mum and family there will be choices you will have to make witch you will find very hard but i am sure will be the right ones god bless dolly gee

 

[sunny]

Hi Fiona,

Yep I think she has all the signs of probably vascular dementia, but who are we to know. Get back to her GP and make an appointment as soon as possible and actively pursue the matter from that appointment. She is quite clearly not well so u can relate all the goings on to the GP and demand that action is taken. Why the hell we have to put up with this blooming nonsense from some of these professionals I dont know. I think its about time to stop the pussyfooting about and call a spade a spade. There is quite clearly a concerted effort from some professional quarters to turn a complete blind eye and just let us carers go on and on till we are driven into the ground. Unless we all fight (and I mean "spitting feathers" fightin) then we will all be walked on. I am absolutely fed up with the nincompoops (is that how it spelt?) we all have come across in our experiences of dementia. Its an utter disgrace and god help the next nincompoop I come across!

 

[Nebiroth]

Dear Fiona, the symptoms you describe are so "text book" indicative of some form of dementia that I find the response (or lack of) from the GP incomprehensible!

It's no good basing an opinion on the MMSE or a single visit - as well all know, some people with terrible problems perform quite well on the test and present very well to strangers on a good day.

Confused time sense; deteriorating short term memory; inability to perform simple tasks; general confusion; inability to understand the concepts of finance; confused and jumbled speech (I am willing to bet that mum often replaces words with nonsense phrases like "wotsits" or "whassnames" or "you know, that thing"). Each one alone should be enough to start warning bells ringing, but taken together...!

I'm afraid the insistance that clocks/calendars are "wrong" and that someone is "stealing" things are typical as well. It's because the person is trying to resolve a conflict. They know what time it is, after all, no one would mix up morning with evening or not know what year it is, therefore the only explanation is that the clock and calendar are wrong. Same thing with "stealing". To your mum (who can't remember where things are, or moving them, or putting them in strange places) things are suddenly vanishing with no explanation, so to her it makes sense that they are being "stolen". It doesn;t matter that this is a far less rational explanation - it is a coping mechanism.

It also sounds as though mum is rapidly losing control of her finances. Do you have any sort of power of attorney arranged? If not it may be too late for her to create one. But sadly she is going to spend all of her money - the mountains of food, the catalogue purchases and worst of all those "prize" scams.

It sounds as though mum is reaching the stage where she is not safe. You need to make your concerns to the GP very clear, I think in writing.

My dad displayed most of the symptoms you describe, but not as bad, and that was enough to trigger a visit from a consultant and CPN and social services, and that was two years ago!