help

jackthelad19199

Registered User
Jan 16, 2020
10
hello my partner was diagnosed with vascular dementia 2years ago yet he has had little or no support from consultants gps etc i have constantly tried to get advice help advice for him and we have both spent hour after hour trying to explain to doctors how this dreadful illness effects people yet it falls on deaf ears my partner has now sucidal thoughts often but no one seems to care can any one offer any help or advice please
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,480
Yorkshire
Hello @jackthelad19199
A warm welcome to DTP

Sorry to hear that you are getting no recognition of your situation

I'd go back to the GP and consultant, tell them what you have written here and ask for a referral to the Community Psychiatric Team... let them know your husband is a 'vulnerable adult' who is 'at risk of harm' due to his stated thoughts of self harm... Don't just call them, send email and letter (keep a copy) so that you create a paper trail to prove you have made them aware

You might also contact your Local Authority Adult Services and ask for an assessment of your husband's care needs stressing that he is thinking of harming himself so you are concerned for his safety... use the phrases above and also that you fear this may become a safeguarding issue

For support, contact Admiral Nurses
https://www.dementiauk.org/get-support/admiral-nursing/

And there's the Dementia Helpline to talk with one of the knowledgeable advisors
https://www.alzheimers.org.uk/get-support/national-dementia-helpline

Keep posting too
 

jackthelad19199

Registered User
Jan 16, 2020
10
Welcome from me too @jackthelad19199

You'll find people on this forum understand so keep posting.
thank u everybody i hate criticizing nhs doctors etc but i have to say since my husbands diagnose his gp has not even bothered to ask how hes getting on only before xmas i requested a review of his medication some hes been on for some years i know he gets very angry about their attitude has i do he can t at times get painkillers on repeat the only help hes had from his gp surgery is from a diabetic nurse but thats another story thank u one and all
 

Bunpoots

Volunteer Host
Apr 1, 2016
3,792
Nottinghamshire
To be honest @jackthelad19199 Im not sure that doctors have any idea what to do when they’re faced with an incurable disease. Some are better than others. Some are brilliant others, frankly, clueless.

I didn’t find The medical profession particularly helpful while I was looking after my dad. I know a lot of the time I felt I was clutching at straws. The one thing that helped me through more than anything was this forum. Someone would always come along - not necessarily with a solution - but always with ideas and compassion. Stay with us and we’ll do our best to support you.
 

jackthelad19199

Registered User
Jan 16, 2020
10
To be honest @jackthelad19199 Im not sure that doctors have any idea what to do when they’re faced with an incurable disease. Some are better than others. Some are brilliant others, frankly, clueless.

I didn’t find The medical profession particularly helpful while I was looking after my dad. I know a lot of the time I felt I was clutching at straws. The one thing that helped me through more than anything was this forum. Someone would always come along - not necessarily with a solution - but always with ideas and compassion. Stay with us and we’ll do our best to support you.
thank u its been a lonely journey so far i have tried telling his doctors has i should know his progress has i see him24hours a day know hes practically given up on his independence his consultant even talked about discharging him last time untill i firmly said no jack took this really bad has he saw it has his days were numbered keep up the good work
 

canary

Registered User
Feb 25, 2014
11,306
South coast
When mum was seen at the memory clinic, she had an initial testd, was sent for a scan, then went back for the diagnosis. As it was Alzheimers she was then seen a few times to make sure that she was OK on her tablets and then discharged. They never offered any help or advice in how to cope (except for a handful of leaflets). I know that in some areas they check people with dementia every 6 months, but personally I cant see any reason for that. As carers we can see the decline - it doesnt need to be documented, it was becoming increasingly hard to get mum to go to any appointments and there wasnt any further treatment that could be offered anyway. What are you expecting from the doctors?
 

canary

Registered User
Feb 25, 2014
11,306
South coast
TP is the only help I get and I think we should have more back-up.
I think its more help from Social Services that we need - the doctors cant do anything unless its for something like aggressiveness or paranoia and you can get referred back to the doctor for that at the moment. I agree that we are just left on our own to cope, but most of the problems are things like the accusations, not wanting to shower, not being able to leave them, loss of mobility and incontinence. These are not things that the doctors can do anything about.
 

White Rose

Registered User
Nov 4, 2018
344
I think its more help from Social Services that we need - the doctors cant do anything unless its for something like aggressiveness or paranoia and you can get referred back to the doctor for that at the moment. I agree that we are just left on our own to cope, but most of the problems are things like the accusations, not wanting to shower, not being able to leave them, loss of mobility and incontinence. These are not things that the doctors can do anything about.
Agree more help from Social Services needed, my experience is that we're just left on our own with no contact with any services. Just the occasional home visit would be so nice, just to know you're on their radar, a friendly face to pop in and see how things are going, even if nothing can be done. Many dementia carers are completely isolated in their ever shrinking world - it's not a nice place to be.
 

Joyt

Registered User
Jun 30, 2018
46
I couldn’t agree more. The responsibility and isolation is terrible. A regular visit from any service would be such a life saver. I was fortunate to have someone come from OH following a fall my husband had. Her department was being privatised and by hugely lucky chance her workload was temporarily reduced. She took it on herself to ‘see’ him for several weeks but in reality she was seeing me.
 

vannesser

Registered User
Apr 4, 2016
266
My oh was diagnosed 4 years ago with vascale.he when’s throw a grace of wonting to end it all . I saw docters and they gave him depression pills .
You need to tell your doctor you are conserved he might be depress and need something .

I was told when my husband was diagnosed they don’t give pill for it only if he gets a illness thay give you antiebiy the rest of time is Andes it best you can
Keep posting on here get a lot of advice xxxx
 

jackthelad19199

Registered User
Jan 16, 2020
10
When mum was seen at the memory clinic, she had an initial testd, was sent for a scan, then went back for the diagnosis. As it was Alzheimers she was then seen a few times to make sure that she was OK on her tablets and then discharged. They never offered any help or advice in how to cope (except for a handful of leaflets). I know that in some areas they check people with dementia every 6 months, but personally I cant see any reason for that. As carers we can see the decline - it doesnt need to be documented, it was becoming increasingly hard to get mum to go to any appointments and there wasnt any further treatment that could be offered anyway. What are you expecting from the doctors?
like many of us when the big D is diagnosed its a new and scary journey many of us inlcuding my partner are confused what to expect i dont expect appointments every 5mins but a 15min apointment every 6months seems to me doctors playing a guessing game
 

jackthelad19199

Registered User
Jan 16, 2020
10
Agree more help from Social Services needed, my experience is that we're just left on our own with no contact with any services. Just the occasional home visit would be so nice, just to know you're on their radar, a friendly face to pop in and see how things are going, even if nothing can be done. Many dementia carers are completely isolated in their ever shrinking world - it's not a nice place to be.
i think we both feel isolated at times for many reasons especially the way the dr drs in charge of jackscare have treated us a friendly face a bit of reassurance now and then thankfully jack has always in the past been a strong willed person something he trys to retain his fav bit nawty phrase is dont let the Bs get u down
 

kindred

Registered User
Apr 8, 2018
2,338
When mum was seen at the memory clinic, she had an initial testd, was sent for a scan, then went back for the diagnosis. As it was Alzheimers she was then seen a few times to make sure that she was OK on her tablets and then discharged. They never offered any help or advice in how to cope (except for a handful of leaflets). I know that in some areas they check people with dementia every 6 months, but personally I cant see any reason for that. As carers we can see the decline - it doesnt need to be documented, it was becoming increasingly hard to get mum to go to any appointments and there wasnt any further treatment that could be offered anyway. What are you expecting from the doctors?
There is something practical gps can offer and mine did. They gave me a note to show the receptionist when I needed the doctor. The note explained that I was a carer and should be given an appointment to be seen at once.
When my husband went into a nursing home, they sent me a letter saying how well I had done all the years of being carer, and previously sent me a letter saying they would come out to see him or me whenever I needed them.
When my husband died, they sent me a condolence card.
This is a very busy urban practice and their kindness meant the world to me. Warmest, kindred


W
 

Vitesse

Registered User
Oct 26, 2016
145
There is something practical gps can offer and mine did. They gave me a note to show the receptionist when I needed the doctor. The note explained that I was a carer and should be given an appointment to be seen at once.
When my husband went into a nursing home, they sent me a letter saying how well I had done all the years of being carer, and previously sent me a letter saying they would come out to see him or me whenever I needed them.
When my husband died, they sent me a condolence card.
This is a very busy urban practice and their kindness meant the world to me. Warmest, kindred


W
What a wonderful GP practice! Our is good, but nothing like that!!
When my husband was diagnosed with AD, we found ourselves in the same situation as many of you. A few weeks of appointments while the medication was sorted out and then discharged to our own GP. He is good and empathetic, but actually all that happened was repeat prescriptions issued. After about 15 months, my husband’s aggression and confusion got so bad, that I ended up in tears on the phone to the GP several times and he referred us to the Mental Health Team. That also had a shaky start with the nurse suggesting it was all caused by an infection or a bug. A few weeks later, a repeat of my tearful call to the GP and another referral to the Mental Health Team and this time they took us seriously. The consultant changed my husbands medication and gradually has added Risperidone and Mirtazipine, has allocated us a Psychiatric nurse, and got the SS involved. They all realised that I couldn’t cope with it all and had become suicidal. Like many people on TP, all I want now is someone to contact when the going gets tough. My husband has refused to go to the Day Centre and also to have a PA to stay with him to give me a break. But I can grin and bear it knowing there is support out there. It seems I’m luckier than most!! The help didn’t come by sitting quietly at home, however. You have to make a nuisance of yourself!!!
 

White Rose

Registered User
Nov 4, 2018
344
What a wonderful GP practice! Our is good, but nothing like that!!
When my husband was diagnosed with AD, we found ourselves in the same situation as many of you. A few weeks of appointments while the medication was sorted out and then discharged to our own GP. He is good and empathetic, but actually all that happened was repeat prescriptions issued. After about 15 months, my husband’s aggression and confusion got so bad, that I ended up in tears on the phone to the GP several times and he referred us to the Mental Health Team. That also had a shaky start with the nurse suggesting it was all caused by an infection or a bug. A few weeks later, a repeat of my tearful call to the GP and another referral to the Mental Health Team and this time they took us seriously. The consultant changed my husbands medication and gradually has added Risperidone and Mirtazipine, has allocated us a Psychiatric nurse, and got the SS involved. They all realised that I couldn’t cope with it all and had become suicidal. Like many people on TP, all I want now is someone to contact when the going gets tough. My husband has refused to go to the Day Centre and also to have a PA to stay with him to give me a break. But I can grin and bear it knowing there is support out there. It seems I’m luckier than most!! The help didn’t come by sitting quietly at home, however. You have to make a nuisance of yourself!!!
So sad isn't it that we are left to deal with this alone. I know I'm luckier than most in being able to pay for care because if I didn't have carers to help out I know I would be depressed and it would make my partner's life a misery too. It makes me so angry what people who write on TP have to deal with, particularly the aggression, and often this is older carers who left alone in this frightening situation, it's not good enough!! I've heard Admiral nurses mentioned a number of times but they don't cover the whole country and you just have to be lucky if there is one in your postcode.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,480
Yorkshire
Hi @White Rose
I agree there is not an Admiral Nurse in every location however for someone to talk with in real time
They have a Helpline which is national and those who work on the Helpline are Nurses too so have lots of knowledge and access to local information

https://www.dementiauk.org/get-support/dementia-helpline-alzheimers-helpline/

The same for the AS helpline... the advisors have a lot of experience and can direct to local services

https://www.alzheimers.org.uk/get-support/national-dementia-helpline

https://www.alzheimers.org.uk/get-support/your-support-services