Vascular Dementia query

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
My partner was showing signs of memory loss, but then became overwhelmingly ill due to Crohn's disease.

Whilst he was in hospital they did a brain scan without telling me, and without telling me the results. I only realised it when I saw his discharge letter some weeks later.

He had life saving surgery and a 6 hour op, leaving him with an ileostomy.

A few weeks later, we had an appt at the Memory Clinic, and he was diagnosed with vascular/mixed dementia using the brain scan taken a few days before he became life threateningly ill and his operation. In the year since, we have had no follow up appts, and I feel that the dementia is advancing quite rapidly.

I have been to the GP and whilst very sympathetic, he says there is no treatment, no cure, and basically we just get on with it.

My question is:-

Do they never do another scan? Do they never monitor the progress of this awful disease? and are we really just left to get on with it?

What experience do other readers have in different parts of the country? We are in Devon.

thanks a lot
 

Tin

Registered User
May 18, 2014
4,820
0
UK
For my mum after diagnosis from memory clinic we had 6 monthly follow ups and this became annual last year. The memory clinic always sends us a letter with a future appointment, but each appointment is usually just monitoring the Dementia progression and discuss any medication if needed. She is still under the memory clinic and whenever I have questions I usually just ring the clinic. Do you have any letters from them with their telephone number?

While mum is still under the memory clinic, our gp tends not to discuss all things Dementia, except to say that if I can no longer cope then I should consider a care home. So for Dementia I talk to Memory clinic for everything else I pester the gp!
 

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
For my mum after diagnosis from memory clinic we had 6 monthly follow ups and this became annual last year. The memory clinic always sends us a letter with a future appointment, but each appointment is usually just monitoring the Dementia progression and discuss any medication if needed. She is still under the memory clinic and whenever I have questions I usually just ring the clinic. Do you have any letters from them with their telephone number?

While mum is still under the memory clinic, our gp tends not to discuss all things Dementia, except to say that if I can no longer cope then I should consider a care home. So for Dementia I talk to Memory clinic for everything else I pester the gp!
Thanks for that, Tin, I will hunt out a letter and give them a ring on Monday. It's just that I feel so unsupported with it all - I am his sole carer and it is such a responsibility...
 

nanafatana

Registered User
Dec 17, 2017
44
0
My partner was showing signs of memory loss, but then became overwhelmingly ill due to Crohn's disease.

Whilst he was in hospital they did a brain scan without telling me, and without telling me the results. I only realised it when I saw his discharge letter some weeks later.

He had life saving surgery and a 6 hour op, leaving him with an ileostomy.

A few weeks later, we had an appt at the Memory Clinic, and he was diagnosed with vascular/mixed dementia using the brain scan taken a few days before he became life threateningly ill and his operation. In the year since, we have had no follow up appts, and I feel that the dementia is advancing quite rapidly.

I have been to the GP and whilst very sympathetic, he says there is no treatment, no cure, and basically we just get on with it.

My question is:-

Do they never do another scan? Do they never monitor the progress of this awful disease? and are we really just left to get on with it?

What experience do other readers have in different parts of the country? We are in Devon.

thanks a lot
 

nanafatana

Registered User
Dec 17, 2017
44
0
I felt the same way as you and we had'nt had any appointments since last
March. I rang theMemory Clinic last week and was told that we were discharged from
them.It seems once the diagnosis is made they no longer need to see us.I was told
that any problem i had i was to get in touch with Social care.My OH has Vascular Dementia
and our GP said there is no treatment.I do get medication to help to sleep better but we are
getting to the point i think the dose needs to be increased.It is a very tough task we have been given is'nt it?
 

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
It feels as though we have been abandoned to cope with an illness that we are not qualified to deal with. I tried explaining it to someone by saying ( my job is as a genealogist) that it's like turning up at work one day and the door is locked and a note on the door says 'You are not a genealogist any more, you are a fire fighter - there is no training, just go and do it!' That's how I feel anyway....
 

malcolmc

Registered User
Mar 11, 2017
44
0
Colchester
My experience with my mum is very similar to yours maryjoan. Mum lives in Dorset and was diagnosed with vascular dementia in 2015 and was immediately discharged from the memory clinic back to her GP. The memory clinic said they would not be involved again unless GP makes another referral. Since then, we've been left pretty much to deal with mum on my own, with superb support from my wife. We've involved Social Services, who were of limited help. GP comments there is nothing he can do except make sure her meds are correct to minimise risks of further TIAs which would worsen her condition. We also feel very abandoned to deal with mum's situation, but this forum has been absolutely brilliant in sharing experiences, giving support and help. Wishing you well, be assured you are not alone and everyone on here will help where they can.
 

Sammie234

Registered User
Oct 7, 2016
219
0
Shropshire
My partner was showing signs of memory loss, but then became overwhelmingly ill due to Crohn's disease.

Whilst he was in hospital they did a brain scan without telling me, and without telling me the results. I only realised it when I saw his discharge letter some weeks later.

He had life saving surgery and a 6 hour op, leaving him with an ileostomy.

A few weeks later, we had an appt at the Memory Clinic, and he was diagnosed with vascular/mixed dementia using the brain scan taken a few days before he became life threateningly ill and his operation. In the year since, we have had no follow up appts, and I feel that the dementia is advancing quite rapidly.

I have been to the GP and whilst very sympathetic, he says there is no treatment, no cure, and basically we just get on with it.

My question is:-

Do they never do another scan? Do they never monitor the progress of this awful disease? and are we really just left to get on with it?

What experience do other readers have in different parts of the country? We are in Devon.

thanks a lot

Hi @maryjoan
We had 2 visits after initial diagnoses, since then nothing you are left on your own to just basically get on with it. It seems so wrong, left to be a carer of a disease we understand so little off.
 

Bunpoots

Volunteer Host
Apr 1, 2016
7,342
0
Nottinghamshire
My dad has also been discharged from the memory clinic. I too feel abandoned. But they didn't do much after the initial diagnosis and meds anyway.

Dad has mixed dementia so gets meds for the Alzheimer's not the vascular
 

lemonjuice

Registered User
Jun 15, 2016
1,534
0
England
Do they never do another scan? Do they never monitor the progress of this awful disease? and are we really just left to get on with it?
Since then, we've been left pretty much to deal with mum on my own,
. . We had 2 visits after initial diagnoses, since then nothing you are left on your own to just basically get on with it. It seems so wrong, left to be a carer of a disease we understand so little off.
Youare all are so right.

Thing is, despite the disease being identified over a hundred years ago, Drs and the General Public have very little experience or expertise, and with so little real research and no medication, there really is little which they could offer. Factor in that every person's progress with the disease is highly individual, though I agree there is also a certain amount of commonality about symptoms/ strategies which may work and we can see why there is so little help available.
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
Our experience is similar to Tin's with six monthly visits. I am always asked if I want to continue these and I always say yes as I want us to have a point of contact. John did have follow up scans after admission to hospital and seen to be very delusional and later when referred back to the Falls clinic. Still Alzheimers I'm afraid however many scans they do.
 

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
Thank you one and all - it's good to know you are all out there - I have very little help from his family with this - they live 200 miles away. His son is the best, and will look after my partner for 5 days a couple of times a year so I can get away. But the mind numbing monotony of it all, and the loneliness is what gets to me, not having anyone to have a reasonable conversation with....... but on a plus just enjoyed watching the Irish win a Grand Slam in the 6 Nations - my Dad's family are Irish, go good stuff given the date today !
 

Tillybuc01

Registered User
Mar 14, 2018
36
0
Greater Manchester
My partner was showing signs of memory loss, but then became overwhelmingly ill due to Crohn's disease.

Whilst he was in hospital they did a brain scan without telling me, and without telling me the results. I only realised it when I saw his discharge letter some weeks later.

He had life saving surgery and a 6 hour op, leaving him with an ileostomy.

A few weeks later, we had an appt at the Memory Clinic, and he was diagnosed with vascular/mixed dementia using the brain scan taken a few days before he became life threateningly ill and his operation. In the year since, we have had no follow up appts, and I feel that the dementia is advancing quite rapidly.

I have been to the GP and whilst very sympathetic, he says there is no treatment, no cure, and basically we just get on with it.

My question is:-

Do they never do another scan? Do they never monitor the progress of this awful disease? and are we really just left to get on with it?

What experience do other readers have in different parts of the country? We are in Devon.

thanks a lot
 

Loopiloo

Registered User
May 10, 2010
6,117
0
Scotland
I am another who felt we had been abandoned. After a brain scan and diagnosis my husband was discharged, we were told to go way, learn about dementia and prepare ourselves. No guidelines. So much for being told by the GP and practice nurse " you will get help".

Loo x
 
Last edited:

lemonjuice

Registered User
Jun 15, 2016
1,534
0
England
I am another who felt we had been abandoned. After a brain scan and diagnosis my husband was discharged, we were told to go way, learn about dementia and prepare ourselves. No guidelines. So much for being told by the GP
I think this is so often the case.

In my own situation, I had already had 3 family relatives who'd succumbed, yet even so I found the experiences so different and of course having a really close relationship makes it even harder when one is left to do all the caring oneself.
 

NorthBankDave

Registered User
May 10, 2017
15
0
Wolverhampton
Hi Maryjoan, my experience is a similar one to yours. Mum was diagnosed with mixed dementia (vascular dementia & Alzheimers) in October 2016. She had three follow up appointments in December 2016, January & March 2017 to monitor the condition & see if there was any adverse reaction to the Alzheimer's medication.

Once the medication was established care for Mum's dementia passed on to her GP but they don't monitor the progress of her condition, they only do an annual review of her medication - which they did prior to her dementia diagnosis anyway. I'm a sole carer too and have pretty much been left to get on with it really.
 

Rosettastone57

Registered User
Oct 27, 2016
1,839
0
My mother-in-law was diagnosed with mixed dementia in 2015 although she had mental health problems over many years. We had 3 appointments with the memory clinic then she was discharged to the GP. In our area there is a one stop shop called the dementia hub run by Mind and the local council which the memory clinic referred us to. Now I get a phone call from one of their workers every few months to see how we're getting on. They also arranged for a support worker to come to husband and I and give us some personal training on dementia. We had already arranged care package and POA before the dementia diagnosis due to MIL previous health issues anyway. The hub is open for calls for advice during the week and I found them very helpful. It is fair to say that I think you have to be proactive to get things done with this illness
 

Pam3482

Registered User
Dec 30, 2017
33
0
Hi @maryjoan
This appears to be a common theme. I too feel that I have been left alone to ‘get on with it’ after my OH was diagnosed in December. He too was discharged from the memory clinic and told he would not be seen again unless he started being very agitated or aggressive. As more symptoms become apparent I find myself floundering and not knowing how to deal with them. This forum has been a godsend with helpful advice.
 

WA123

Registered User
Jan 20, 2018
85
0
I am very new to this (husband diagnosed the week before Christmas at the age of 58) but we have a friend whose wife is in the final stages of vascular dementia and he pointed me in the direction of Contented Dementia (it won't let me post the link here so you'll need to look it up). I realise their techniques won't be for everyone but I can truly say that since I put a couple of strategies in place our lives have been transformed. Before, my husband was always anxious and irritable as well as completely losing his sense of humour. After, most of the time he is (almost) his old self. I am sure this won't last but they give you strategies to work with and I think it's worth considering.
 

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