Mam not yet diagnosed

Notenoughsleep

Registered User
May 25, 2015
31
0
Wales
Hi everyone,
I'm after a bit of advice please - I'm new to this so please bear with ...:)
My mam (82) is awaiting Parkinsons/Dementia diagnosis. Has been referred to Memory Clinic - appointment is in September (!) As she's not yet diagnosed, I have not been given any contact numbers/support people so have been doing most of my "research" online and in libraries. She regularly confuses me with my daughter/meals on wheels girls, thinks my bag on the chair or cushions are people, talks to soft toys as if they were my kids when they were little "granmas babies". I witnesses an hallucination the other day where she had seen a grey expressionless face and it scared her. Think it might have been the buttons on the small stereo or has caught sight of herself in the mirror. Rang doctor to try to get her in private as September is such a long way off. I know she's also restless at night and has recently been using the downstairs loo because "whoever was in the bathroom was there all night". Hate to think of her wandering around the house - she hasn't yet wandered outside although found her bus pass on the settee other day and bag and coat ready "to go to work". I removed the bus pass swiftly and then got a phone call at 10.30 that evening saying she'd lost it and would have to walk to the office to get another one! I wondered whether I'd done the right thing. I "found" it a few days later and suggested I look after it but she's not happy with that and the bus pass conversation appears every day now! (It's as if she chooses to remember some things!) She also thinks I live there "didn't hear you leave this morning", have had telephone calls to "collect the kids as I want to lock up for the night". And yesterday, I discovered she's been using the shower as a toilet - just wee, I hope! Thing is, this disease seems to be racing along - there's something new for me to worry about every day (in January, she was "normal" enough to suggest a power of attorney be set up, which thankfully we did). So, as nothing has been formally diagnosed yet - and I'm sure once it has, I'll be bombarded with leaflets and support contact numbers etc - I'm just wondering, are all of these things normal with dementia and if so, what type of dementia do you think it might be and what stage do you think she's at? Sorry to ramble - TP seems to be a great place for information for what I've read so far and you all seem so informative here. I have no siblings so am doing all the caring myself in between jobs. She's not at the stage where she needs help dressing, washing, although I do wash her hair. She's still able to wash dishes, iron, hoover (although lately she "doesn't feel like doing anything"). Sleeps a lot in her chair throughout the day. Thanks for listening - any help appreciated xx

Edit as concerned about behaviour.
Phone call last night to say my daughter was unresponsive on the sofa and what should she do. Reassured her it would be ok and would sort it out tomorrow. When I called she showed me my daughter (the cushions) and said she'd been like it all night - unresponsive with a blank face. I was not sure what to do but managed to distract her. There's about 6 cushions on the sofa - should I remove them or would the change do more damage than good?? Any views appreciated??
 
Last edited:

Grannie G

Volunteer Moderator
Apr 3, 2006
81,443
0
Kent
I would return to the gP and ask for the assessment ti=o be hurried up because it`s obvious your mother needs some help.

Log behavioural concerns and confusions, timed and dated so the GP can appreciate the frequency .

It does sound as if already she is at risk and it would help her case if the GP accepted this.
 

Kezzamac

Registered User
Apr 28, 2015
31
0
Somerset
Hi everyone,
I'm after a bit of advice please - I'm new to this so please bear with ...:)
My mam (82) is awaiting Parkinsons/Dementia diagnosis. Has been referred to Memory Clinic - appointment is in September (!) As she's not yet diagnosed, I have not been given any contact numbers/support people so have been doing most of my "research" online and in libraries. She regularly confuses me with my daughter/meals on wheels girls, thinks my bag on the chair or cushions are people, talks to soft toys as if they were my kids when they were little "granmas babies". I witnesses an hallucination the other day where she had seen a grey expressionless face and it scared her. Think it might have been the buttons on the small stereo or has caught sight of herself in the mirror. Rang doctor to try to get her in private as September is such a long way off. I know she's also restless at night and has recently been using the downstairs loo because "whoever was in the bathroom was there all night". Hate to think of her wandering around the house - she hasn't yet wandered outside although found her bus pass on the settee other day and bag and coat ready "to go to work". I removed the bus pass swiftly and then got a phone call at 10.30 that evening saying she'd lost it and would have to walk to the office to get another one! I wondered whether I'd done the right thing. I "found" it a few days later and suggested I look after it but she's not happy with that and the bus pass conversation appears every day now! (It's as if she chooses to remember some things!) She also thinks I live there "didn't hear you leave this morning", have had telephone calls to "collect the kids as I want to lock up for the night". And yesterday, I discovered she's been using the shower as a toilet - just wee, I hope! Thing is, this disease seems to be racing along - there's something new for me to worry about every day (in January, she was "normal" enough to suggest a power of attorney be set up, which thankfully we did). So, as nothing has been formally diagnosed yet - and I'm sure once it has, I'll be bombarded with leaflets and support contact numbers etc - I'm just wondering, are all of these things normal with dementia and if so, what type of dementia do you think it might be and what stage do you think she's at? Sorry to ramble - TP seems to be a great place for information for what I've read so far and you all seem so informative here. I have no siblings so am doing all the caring myself in between jobs. She's not at the stage where she needs help dressing, washing, although I do wash her hair. She's still able to wash dishes, iron, hoover (although lately she "doesn't feel like doing anything"). Sleeps a lot in her chair throughout the day. Thanks for listening - any help appreciated xx

OMG, you could be talking about my Mil!! Exactly the same stage that we're at. We've had an initial appointment at the memory clinic and are seeing a doctor there next week. I know exactly how frustrating it is to feel like y have no help and no options.
My Mil locked herself out of the house twice and that's when I got in touch with social services. I don't know your Mum's financial situation, but my Mil has too much in savings so social services can't do much! We were told to sort some care ourselves.
As to what stage she's at - everyone is different and dementia develops at different rates with different people. You could be describing my Mil and we've had an initial diagnosis of vascular dementia combined with Alzheimer's.
Having read up on the different stages I think Mil is in the mid stages. She can still eat with no problems, but has to have her food prepared otherwise she doesn't bother. She is still able to use the toilet but only showers if I remind her. She has problems selecting clothes and sometimes wears the same things over and over. Almost every morning now Mil is waiting at the door 'to be picked up', usually by her father, who did 30 years ago. Today she keeps asking if we have a key for the flat - we haven't worked out where this flat is or who owns it, but she's adamant we need to keep the key so we can use it as a bolt hole!
I sympathise completely with what you're going through and hope you get some help soon x
 

Notenoughsleep

Registered User
May 25, 2015
31
0
Wales
I would return to the gP and ask for the assessment ti=o be hurried up because it`s obvious your mother needs some help.

Log behavioural concerns and confusions, timed and dated so the GP can appreciate the frequency .

It does sound as if already she is at risk and it would help her case if the GP accepted this.

Thanks for replying, Grannie G. I rang the doctor as soon as I witnessed the hallucination and he agreed she needs to be seen sooner rather than later. There's a 6 month waiting list for mental health problems here in Wales! At the appointment, he asked me about the delusions and hallucination - but asked me when mam was present and "normal"! I found it so difficult to describe in her presence (a) without crying and (b) with her getting indignant that she had no hallucination! He spoke to her and suggested (as I had requested him to over the phone previously) a private GP and said "you don't have to do this if you don't want". She's since picked up on this remark and has told me she'd rather wait than pay (although she has pots!) but I'll deal with this again once we have an appointment. I have kept a diary and have logged every odd moment since easter. Thanks again xx
 

Notenoughsleep

Registered User
May 25, 2015
31
0
Wales
Yes, it sounds like it is progressing quite rapidly at the moment and your GP may be able to bring the appointment forwards.

I thought these couple of fact sheets might help

Apologies if you already know about this.

Thanks so much for responding, Canary, and for sending the links. I had suspected lewy bodies also. Waiting for an appointment from private doc at moment. Thanks again xx
 

Notenoughsleep

Registered User
May 25, 2015
31
0
Wales
OMG, you could be talking about my Mil!! Exactly the same stage that we're at. We've had an initial appointment at the memory clinic and are seeing a doctor there next week. I know exactly how frustrating it is to feel like y have no help and no options.
My Mil locked herself out of the house twice and that's when I got in touch with social services. I don't know your Mum's financial situation, but my Mil has too much in savings so social services can't do much! We were told to sort some care ourselves.
As to what stage she's at - everyone is different and dementia develops at different rates with different people. You could be describing my Mil and we've had an initial diagnosis of vascular dementia combined with Alzheimer's.
Having read up on the different stages I think Mil is in the mid stages. She can still eat with no problems, but has to have her food prepared otherwise she doesn't bother. She is still able to use the toilet but only showers if I remind her. She has problems selecting clothes and sometimes wears the same things over and over. Almost every morning now Mil is waiting at the door 'to be picked up', usually by her father, who did 30 years ago. Today she keeps asking if we have a key for the flat - we haven't worked out where this flat is or who owns it, but she's adamant we need to keep the key so we can use it as a bolt hole!
I sympathise completely with what you're going through and hope you get some help soon x

Kezzamac, thanks for responding. I would be most grateful if you would let me know your outcome as both my mam and your MIL's symptoms are so similar, although I suspect lewy bodies with my mam. She eats like a horse but doesn't gain weight. She also has a flat that we don't know about! Hope you get something positive from the memory clinic xx
 

Kezzamac

Registered User
Apr 28, 2015
31
0
Somerset
Kezzamac, thanks for responding. I would be most grateful if you would let me know your outcome as both my mam and your MIL's symptoms are so similar, although I suspect lewy bodies with my mam. She eats like a horse but doesn't gain weight. She also has a flat that we don't know about! Hope you get something positive from the memory clinic xx

Of course I'll let you know the outcome next week :)
 

Notenoughsleep

Registered User
May 25, 2015
31
0
Wales
Not sure what to do

Editd from yesterday's post.
Phone call last night to say my daughter (the cushions) was unresponsive on the sofa and what should she do. Reassured her it would be ok and would sort it out tomorrow. When I called she showed me my daughter and said she'd been like it all night - unresponsive with a blank face. I was not sure what to do but managed to distract her. There's about 6 cushions on the sofa - should I remove them or would the change do more damage than good?? Any views appreciated??
 

Bernadette2

Registered User
Mar 13, 2015
27
0
Editd from yesterday's post.
Phone call last night to say my daughter (the cushions) was unresponsive on the sofa and what should she do. Reassured her it would be ok and would sort it out tomorrow. When I called she showed me my daughter and said she'd been like it all night - unresponsive with a blank face. I was not sure what to do but managed to distract her. There's about 6 cushions on the sofa - should I remove them or would the change do more damage than good?? Any views appreciated??

Hi
With Dementia folk can often think a coat hanging up is a person, a reflection in a mirror is a foe, cushions therefore could easily be a child to watch over and
What also happens is people return to their roles/pursuits in earlier life so your mum, quite naturally could be returning to a really basic and powerful role of watching over a sleeping child?
I would move the cushions - one less thing for her to worry about and reassure her that your daughter is elsewhere and well...
 

Notenoughsleep

Registered User
May 25, 2015
31
0
Wales
Hi
With Dementia folk can often think a coat hanging up is a person, a reflection in a mirror is a foe, cushions therefore could easily be a child to watch over and
What also happens is people return to their roles/pursuits in earlier life so your mum, quite naturally could be returning to a really basic and powerful role of watching over a sleeping child?
I would move the cushions - one less thing for her to worry about and reassure her that your daughter is elsewhere and well...

Thanks for that Bernadette2. Cushions removed = result! Nothing mentioned again. Have also removed anything hanging up on wardrobes and bags on the floor in the corner of her bedroom. I have also worked out that the little girl who comes in with my daughter to visit is actually my daughter's bulky school bag so we've decided to keep everything in the hallway out of view when we visit.
Just need to work out who the man with the beard is now ...
 

Kezzamac

Registered User
Apr 28, 2015
31
0
Somerset
Hi Not enough sleep
We visited the memory clinic this week and the doctor confirmed vascular dementia and Alzheimer's. She's been put on medication to help boost the memory cells still present and hopefully to reduce her anxiety.
We also had a visit today from a dementia nurse from the day hospital. They have invited her to come for assessment to see what groups she might benefit from. I'm not overly optimistic that this will work as she's never been a joiner, but at least we're being given options.
I hope you get Your mum seen soon x
 

Notenoughsleep

Registered User
May 25, 2015
31
0
Wales
Hi Not enough sleep
We visited the memory clinic this week and the doctor confirmed vascular dementia and Alzheimer's. She's been put on medication to help boost the memory cells still present and hopefully to reduce her anxiety.
We also had a visit today from a dementia nurse from the day hospital. They have invited her to come for assessment to see what groups she might benefit from. I'm not overly optimistic that this will work as she's never been a joiner, but at least we're being given options.
I hope you get Your mum seen soon x

Hi Kezzamac,
Thanks for replying. How has your mum taken to the medication? All well I hope. I have had a nightmare past 2 weeks and have been staying at my mams. Long story short, ended up taking her to hospital where they confirmed a UTI and she was given antibiotics which we thought would reduce the hallucinations - they haven't. I planned on staying with her for one or 2 nights when she came out of hospital but have been there for 2 weeks now and I know now night time is a whole new world for her! She's up wanting the loo every 15-30 minutes and in between that, she's mumbling, wandering and emptying drawers "packing". She has 5, 10 minute cat naps throughout the day - I don't know how she does it! Doc has checked her for irritated bladder but that has proved fine. She is so unsteady on her feet at night, I can't possibly leave her alone so have had to employ sitters for some nights and that is SO expensive! We're seeing a consultant tomorrow (can't come quick enough!) so hopefully, some medication should be on its way soon (if not for her, for me!).
Jan
 

henfenywfach

Registered User
May 23, 2013
332
0
rct
Hi everyone,
I'm after a bit of advice please - I'm new to this so please bear with ...:)
My mam (82) is awaiting Parkinsons/Dementia diagnosis. Has been referred to Memory Clinic - appointment is in September (!) As she's not yet diagnosed, I have not been given any contact numbers/support people so have been doing most of my "research" online and in libraries. She regularly confuses me with my daughter/meals on wheels girls, thinks my bag on the chair or cushions are people, talks to soft toys as if they were my kids when they were little "granmas babies". I witnesses an hallucination the other day where she had seen a grey expressionless face and it scared her. Think it might have been the buttons on the small stereo or has caught sight of herself in the mirror. Rang doctor to try to get her in private as September is such a long way off. I know she's also restless at night and has recently been using the downstairs loo because "whoever was in the bathroom was there all night". Hate to think of her wandering around the house - she hasn't yet wandered outside although found her bus pass on the settee other day and bag and coat ready "to go to work". I removed the bus pass swiftly and then got a phone call at 10.30 that evening saying she'd lost it and would have to walk to the office to get another one! I wondered whether I'd done the right thing. I "found" it a few days later and suggested I look after it but she's not happy with that and the bus pass conversation appears every day now! (It's as if she chooses to remember some things!) She also thinks I live there "didn't hear you leave this morning", have had telephone calls to "collect the kids as I want to lock up for the night". And yesterday, I discovered she's been using the shower as a toilet - just wee, I hope! Thing is, this disease seems to be racing along - there's something new for me to worry about every day (in January, she was "normal" enough to suggest a power of attorney be set up, which thankfully we did). So, as nothing has been formally diagnosed yet - and I'm sure once it has, I'll be bombarded with leaflets and support contact numbers etc - I'm just wondering, are all of these things normal with dementia and if so, what type of dementia do you think it might be and what stage do you think she's at? Sorry to ramble - TP seems to be a great place for information for what I've read so far and you all seem so informative here. I have no siblings so am doing all the caring myself in between jobs. She's not at the stage where she needs help dressing, washing, although I do wash her hair. She's still able to wash dishes, iron, hoover (although lately she "doesn't feel like doing anything"). Sleeps a lot in her chair throughout the day. Thanks for listening - any help appreciated xx

Edit as concerned about behaviour.
Phone call last night to say my daughter was unresponsive on the sofa and what should she do. Reassured her it would be ok and would sort it out tomorrow. When I called she showed me my daughter (the cushions) and said she'd been like it all night - unresponsive with a blank face. I was not sure what to do but managed to distract her. There's about 6 cushions on the sofa - should I remove them or would the change do more damage than good?? Any views appreciated??

Hi!
I care for my dad who has dlb and it too forever to get an appointment....so i emailed the dept everyday and rang until they got fed up of me....i took matters into my own hands and emailed a professor in wales.. (as we are too!) On the absolute begging chance hed see us!..
I emailed the memory clinic and told them..suprise suprise my dads appointment appeared....!!

Its cruel to leave people needing diagnosis without correct diagnosis for months... we wouldnt treat animals like that!

My dad has medication for the alzheimers symptoms as there are no legal drugs for the dlb as a whole..my dad was 1% brighter on it..but the sleep disorder..falls hallucinations delusions and balance still happen..his perceptions are appauling. You are right to read the info..ive attended every course or training offered..its helped me no end. Still keeps me on my toes..changing from minute to minute...we attend all the activities the alzheimers society provide..they re for all of us...meeting people that know how you feel and they feel..

You cant have a flag on your records or go on the dementia register until you have a diagnosis..its ridiculous...

Keep ringing..demanding..keep strong..

Best wishes



Sent from my GT-I9505 using Talking Point mobile app
 

Notenoughsleep

Registered User
May 25, 2015
31
0
Wales
Hi!
I care for my dad who has dlb and it too forever to get an appointment....so i emailed the dept everyday and rang until they got fed up of me....i took matters into my own hands and emailed a professor in wales.. (as we are too!) On the absolute begging chance hed see us!..
I emailed the memory clinic and told them..suprise suprise my dads appointment appeared....!!

Its cruel to leave people needing diagnosis without correct diagnosis for months... we wouldnt treat animals like that!

My dad has medication for the alzheimers symptoms as there are no legal drugs for the dlb as a whole..my dad was 1% brighter on it..but the sleep disorder..falls hallucinations delusions and balance still happen..his perceptions are appauling. You are right to read the info..ive attended every course or training offered..its helped me no end. Still keeps me on my toes..changing from minute to minute...we attend all the activities the alzheimers society provide..they re for all of us...meeting people that know how you feel and they feel..

You cant have a flag on your records or go on the dementia register until you have a diagnosis..its ridiculous...

Keep ringing..demanding..keep strong..

Best wishes



Sent from my GT-I9505 using Talking Point mobile app

Thanks for replying henfenywfach (I'm also in RCT - say no more!:rolleyes:)
Just saw the consultant today who diagnosed middle stage altzheimers and has given her medication (which he also said GPs are reluctant to prescribe as it is so expensive). Has also given her a small dose of sleeping tablets and thinks the tamazepan she was on for 20 years (! - who puts someone on sleeping tablets for 20 years!!!!) and came off them abruptly, might be causing the hallucinations. Anyway, time will tell.
Jan