How do you make them listen?

siouxk

Registered User
May 17, 2022
13
0
To be honest, I am at my wits end. My husband has been showing signs of severe memory loss, confusion, behavioural changes etc, for about a year now. Even he can see it - a couple of incidents have scared him to the point where he wont go out alone any more. We went to the doctors, they referred him to adult mental health, who basically did a memory test that he passed with flying colours - he can tell the time etc, but cannot remember a 3 item shopping list! After 33 years of marriage he's forgotten how to wallpaper - we know there is a problem, but because he passed this paper test they've diagnosed depression and put him on tablets that make him sleep most of the time, and then discharged him. We have asked for another referral after he got lost in town, but 6 months on ,we're still trying to deal with this on our own. I am tired, apart from the day stuff, he kicks/hits out in his sleep, so I doze on the edges most nights. I don't like to lose patience, but after having the same conversation several times, or being told I never had a certain conversation, I am losing it - beginning to think it's me not him!! Although, family have noticed too, but just can't seem to get anyone to listen or help
 

Helenjane

Registered User
Nov 20, 2021
22
0
I am sorry I can’t help you but I am watching with interest for replies because I am going through the same with my mum. She hasn’t taken any tests yet but believes I am living in her spare bedroom sometimes - when I am 60 miles away - and various other serious indications. I was told to ask her GP to contact her on a pretext so that they could investigate somI am in the process of trying that at the moment. Unfortunately it isn’t going swimmingly but I will persevere. All the best to you and your husband.
 

cobden 28

Registered User
Dec 15, 2017
193
0
If your husband kicks or hits out in his sleep at might, have you thought to try two single beds instead of a double bed in your bedroom? This is what my Mum did with my late stepdad, and it worked. Stepdad used to get up for the toilet two or three times in the night and when he came back to bed he sat dwn on the edge of the bed woth such force he woke Mum upo and she couldn't get back to sleep afterwards; with single beds Mum didn't get her sleepo disturbed.
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,259
0
High Peak
Make a bullet list of all the behaviours - these are symptoms of dementia not depression. Send the list to your husband's GP then request another appointment. Tell him/her you are at your wits end because of these behaviours.
 

Alfran

New member
Jul 27, 2021
5
0
To be honest, I am at my wits end. My husband has been showing signs of severe memory loss, confusion, behavioural changes etc, for about a year now. Even he can see it - a couple of incidents have scared him to the point where he wont go out alone any more. We went to the doctors, they referred him to adult mental health, who basically did a memory test that he passed with flying colours - he can tell the time etc, but cannot remember a 3 item shopping list! After 33 years of marriage he's forgotten how to wallpaper - we know there is a problem, but because he passed this paper test they've diagnosed depression and put him on tablets that make him sleep most of the time, and then discharged him. We have asked for another referral after he got lost in town, but 6 months on ,we're still trying to deal with this on our own. I am tired, apart from the day stuff, he kicks/hits out in his sleep, so I doze on the edges most nights. I don't like to lose patience, but after having the same conversation several times, or being told I never had a certain conversation, I am losing it - beginning to think it's me not him!! Although, family have noticed too, but just can't seem to get anyone to listen or help
My husband has dementia and has violent dreams and I started getting kicked and punched at night . I didn't want to move out of our bedroom as I need to know what he is doing when he gets up at night so I solved the problem by putting a pillow longways down the bed between us. Now the pillow takes the blows and I am able to sleep muchj better. Hope this helps.
 

siouxk

Registered User
May 17, 2022
13
0
Make a bullet list of all the behaviours - these are symptoms of dementia not depression. Send the list to your husband's GP then request another appointment. Tell him/her you are at your wits end because of these behaviours.
ty
 

siouxk

Registered User
May 17, 2022
13
0
My husband has dementia and has violent dreams and I started getting kicked and punched at night . I didn't want to move out of our bedroom as I need to know what he is doing when he gets up at night so I solved the problem by putting a pillow longways down the bed between us. Now the pillow takes the blows and I am able to sleep muchj better. Hope this helps.
ty
 

JD55

New member
Mar 10, 2022
6
0
My husband has dementia and has violent dreams and I started getting kicked and punched at night . I didn't want to move out of our bedroom as I need to know what he is doing when he gets up at night so I solved the problem by putting a pillow longways down the bed between us. Now the pillow takes the blows and I am able to sleep muchj better. Hope this helps.
My mom was the same at the beginning of her dementia she remembered most stuff and she still says she hasn’t got it even though she was diagnosed 3 years ago , get to the gp again and take a list of what’s going on , keep persevering to get a diagnosis
 

Sighthoundmum

Registered User
Mar 31, 2022
20
0
Make a bullet list of all the behaviours - these are symptoms of dementia not depression. Send the list to your husband's GP then request another appointment. Tell him/her you are at your wits end because of these behaviours.
This. We keep a diary on my grandmothers behaviour. I made a bullet point list of all our concerns, and took that, and the diary to her appointment. I think the Dr was quite shocked when I whipped it out, I offered to read the bullet points and refer to specific instances in the diary.
My gran has been referred to the memory clinic. Social services have also called, and I sent them a copy of the list too. Thanks to that, we're skipping the memory re-engagement team, as they feel she wouldn't benefit
 

ChrisG

New member
May 18, 2022
2
0
I am sorry I can’t help you but I am watching with interest for replies because I am going through the same with my mum. She hasn’t taken any tests yet but believes I am living in her spare bedroom sometimes - when I am 60 miles away - and various other serious indications. I was told to ask her GP to contact her on a pretext so that they could investigate somI am in the process of trying that at the moment. Unfortunately it isn’t going swimmingly but I will persevere. All the best to you and your husband.
I am a widow living alone I am desperately trying to get a dementia diagnosis-it has been going on for ages-just had someone from the Older persons memory clinic on the phone giving me a 5 minute memory test-he did not even ask if I could make my own food or wash myself or shop-it is as if the just want to fill in forms or tick lists-once you are over 65 years here in Bury lancs then you fail to exist-no visiting your house to see how you are coping or not-it is a national disgrace-just waiting for you to fall or become another statistic
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,418
0
Newcastle
Hi @ChrisG and welcome to Dementia Talking Point. I am sorry to hear about the difficulties that you are facing. Getting others to really listen and take appropriate action can be very frustrating. I hope that now you have joined our community that you'll find support and ideas here.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
I am sorry I can’t help you but I am watching with interest for replies because I am going through the same with my mum. She hasn’t taken any tests yet but believes I am living in her spare bedroom sometimes - when I am 60 miles away - and various other serious indications. I was told to ask her GP to contact her on a pretext so that they could investigate somI am in the process of trying that at the moment. Unfortunately it isn’t going swimmingly but I will persevere. All the best to you and your husband.
Hello @Helenjane
A warm welcome to DTP
You mention serious incidents which must be such a worry for you

I hope you are able to get your mum and the GP together in an appointment ... you might also contact her Local Authority Adult Services and ask for an assessment of her care needs as the serious incidents are making your mum a 'vulnerablecadullt' who is 'at risk of harm' ...at least that will flag up your mum's situation and get her on their radar

Maybe something on this thread might help
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
Hello @ChrisG
A warm welcome from me too

I'm sorry you are not really being listened to

Maybe have a chat with one of our advisors on the Support Line ... they are friendly and helpful

and something here may be of use
 

LouiseW

Registered User
Oct 18, 2021
122
0
Hi - I would look into going private for a diagnosis it may be the best investment you can make right now.

I managed to get my Dad a private appointment back in June 2020 becuase after having him bounced around Memory Clinics for years we just could not go on without an accurate diagnosis with him living alone 200 miles from me.

I honestly believe that if I had not done this, we would still be waiting 9 months between scans and appointments to be told it was probably grief, mild cogniative imapirment etc etc and then have to start the whole thing all over again on a horrible endless useless loop.

He was diagnosed with Lewy Body Dementia by the private consultant in June 2020, was prescribed meds that really helped him for 18 months and gave him a little more precious "cognitiate time" to live independently.
 

siouxk

Registered User
May 17, 2022
13
0
Hi - I would look into going private for a diagnosis it may be the best investment you can make right now.

I managed to get my Dad a private appointment back in June 2020 becuase after having him bounced around Memory Clinics for years we just could not go on without an accurate diagnosis with him living alone 200 miles from me.

I honestly believe that if I had not done this, we would still be waiting 9 months between scans and appointments to be told it was probably grief, mild cogniative imapirment etc etc and then have to start the whole thing all over again on a horrible endless useless loop.

He was diagnosed with Lewy Body Dementia by the private consultant in June 2020, was prescribed meds that really helped him for 18 months and gave him a little more precious "cognitiate time" to live independently.
thank you - we have considered this - is it just a private doctor appointment we need or is there a specialist memory section we need to seek out? We have said we would pay for scans, etc. even if to just rule stuff out, right now we don't know where we are as we have no answers at all - even a no would be positive at this stage
 

NickP

Registered User
Feb 23, 2021
113
0
As someone mentioned above, we have used the 'write it all down' strategy a couple of times and it's been really helpful. So many of these meetings and assessments seem to not go as planned or hoped, or it can be very difficult to raise some things with the person present. When you can pass a list of the things that they are doing/ not doing to the GP or social worker, it makes sure you can share all that you want to.
 

LouiseW

Registered User
Oct 18, 2021
122
0
thank you - we have considered this - is it just a private doctor appointment we need or is there a specialist memory section we need to seek out? We have said we would pay for scans, etc. even if to just rule stuff out, right now we don't know where we are as we have no answers at all - even a no would be positive at this stage
Do a search on "Private Memory Clinic near me" and you should get a few options.

I used a healthcare company, it was June 2020 and everything was up side down but the person I spoke to on the phone went out of their way contacting every consultant in the country and found one at a Clinic who was prepared do a Skype consultation with us - we have since seen them in person a couple of times even though it has meant driving to Bath from Weymouth.

I'm sure now its 2022 more normal services have been resumed you will be able to find what you need closer to home.

Good luck
 

siouxk

Registered User
May 17, 2022
13
0
Hi all, so a quick update. I played merry-hell basically and became the patients wife from hell. I phoned, I chased, I tried every avenue and jumped every hoop they put in front of us. It's the end of Jan 2023 now, that's 2 years of being told I'm crying wolf and he's just depressed. If you're in my situation, keep fighting because finally, finally we got referred to the right clinic for the right tests and it is now confirmed as Alzheimer's. We knew it, now we can face it together and we have support. I wish it had been an easier road, but as I say, if you're in the same situ, keep going and stand by what you know. xxx
 

karaokePete

Registered User
Jul 23, 2017
6,534
0
N Ireland
I'm glad that you got that diagnosis and you can now get targeted support @siouxk

It does take too long - my wife was being investigated and diagnosed with depression and general anxiety disorder for some 2 years before scans were done and the diagnosis made. The scans were only done because I kept producing detailed notes of every unusual behaviour exhibited by my wife.

Back then my wife was like your husband in that she could ace the MMSE. The last time she took the test she scored 5/30! As the disease progresses you will need help.

I wish you both strength.
 

Violet Jane

Registered User
Aug 23, 2021
2,016
0
I always wonder when I read posts about people with dementia initially being treated for anxiety and / depression how many people actually do ‘just’ have anxiety and / or depression. The MMSE is very basic and doesn’t test day to day functioning and the kind of basic problem solving that people need to manage their daily lives. My mother’s initial score was 23/30 when she was struggling with day to day life e.g. shopping, cooking, managing money, turning the heating on. Fortunately, she was diagnosed with Alzheimer’s straight away.