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Feeling LOST!!!!!

Warrior Mum

Registered User
Jul 20, 2014
39
Cambridgeshire
I don't know what to do. My hubby that was diagnosed with Vascular Dementia has been neurologically physcometric tested and the verdict is that he hasn't got dementia!!! I'm completely lost and pushing for GP to get a referral to Cambridge or London but as usual it is takinga long time.

I'm completely drained and struggling to get through the day.

Just want to scream and cry.

WM XxxxX
 

Chuggalug

Registered User
Mar 24, 2014
8,007
Norfolk
I don't know what to do. My hubby that was diagnosed with Vascular Dementia has been neurologically physcometric tested and the verdict is that he hasn't got dementia!!! I'm completely lost and pushing for GP to get a referral to Cambridge or London but as usual it is takinga long time.

I'm completely drained and struggling to get through the day.

Just want to scream and cry.

WM XxxxX
Warrior Mum, it might be important to make a list of what you're seeing, day by day and use that list to grab the GP's attention. Since you, yourself can see that something's not right, you need properly trained people to make a medical assessment. Once you've got a correct diagnosis, then, steps can perhaps be made for the future, care- and otherwise.

I know what it's like, living without a diagnosis and it ain't much fun, six years down the line. I truly hope you get a successful outcome.
 

Warrior Mum

Registered User
Jul 20, 2014
39
Cambridgeshire
The Memory Clinic specialist made the diagnosis of Vascular Dementia, but the intial diagnosis from Neurology specialists was depression!!!! Since my hubby is only 34 and looses memories during sleep, I was able to get him referred onto the Memory clinic and they wanted further testing by the Sleep Clinic and Neurological Physcometric Testing. Seeing as his oxygen levels where ok but his heart rate slightly abnormal he then had a tape monitor (24hr EGC recorder) which showed nothing to cause concern. Physcometric Testing showed anxiety and depression which was explain as acceptable considering what he is going through but no dementia.

This has been going on for 15 months now and we have an 8 yr old high spectrum autistic son and our 2.5 yr old is showing some autistic trates. It's getting more difficult to concentrate and stay focused. I feel extremely isolated, family don't really understand and feels like friends are falling by the wayside and make no real effort to stay in contact. I don't ask for help for either family or friends as I feel like a failure or weak, plus they have their own lives to deal with.
 

Chuggalug

Registered User
Mar 24, 2014
8,007
Norfolk
The Memory Clinic specialist made the diagnosis of Vascular Dementia, but the intial diagnosis from Neurology specialists was depression!!!! Since my hubby is only 34 and looses memories during sleep, I was able to get him referred onto the Memory clinic and they wanted further testing by the Sleep Clinic and Neurological Physcometric Testing. Seeing as his oxygen levels where ok but his heart rate slightly abnormal he then had a tape monitor (24hr EGC recorder) which showed nothing to cause concern. Physcometric Testing showed anxiety and depression which was explain as acceptable considering what he is going through but no dementia.

This has been going on for 15 months now and we have an 8 yr old high spectrum autistic son and our 2.5 yr old is showing some autistic trates. It's getting more difficult to concentrate and stay focused. I feel extremely isolated, family don't really understand and feels like friends are falling by the wayside and make no real effort to stay in contact. I don't ask for help for either family or friends as I feel like a failure or weak, plus they have their own lives to deal with.
Far from being a failure WM; you're facing a daunting time. 34 is an extremely early age to have anything wrong such as you're describing. It's not unknown for someone so young to have some form of dementia, but there certainly needs to be someone in the field who knows what to test for, why they're testing, and what they're looking for.

That doesn't come from experience, it's just plain old common sense.

Hope someone can pop on to point you in the right direction, so you know what to ask for, and who to ask.

I agree. Many people are left alone to cope. I'm sadly, only one of them. Hard work, that. Sending you a mammoth hug.
 

chick1962

Registered User
Apr 3, 2014
11,282
near Folkestone
Oh bless plz don't give up my lovely. Your husband is very young so they will explore all avenues . My husband was 60 and it took them 18 month to give a full diagnosis. We went from this to that and back to this and I understand how hard it must be for you and your family . Best to discuss it all with your GP as he must have all the specialists reports and voice your views on the situation . Hopefully someone else will be along with more advice . Hugs to you x


Sent from my iPhone using Talking Point
 

Warrior Mum

Registered User
Jul 20, 2014
39
Cambridgeshire
Muchly appreciated XxxxX

Far from being a failure WM; you're facing a daunting time. 34 is an extremely early age to have anything wrong such as you're describing. It's not unknown for someone so young to have some form of dementia, but there certainly needs to be someone in the field who knows what to test for, why they're testing, and what they're looking for.

That doesn't come from experience, it's just plain old common sense.

Hope someone can pop on to point you in the right direction, so you know what to ask for, and who to ask.

I agree. Many people are left alone to cope. I'm sadly, only one of them. Hard work, that. Sending you a mammoth hug.

Many thanks and muchly appreciated XxxxX
 

sinkhole

Registered User
Jan 28, 2015
273
Asking for help is most definitely not a failing or weakness.

These problems are not of your making, so there is nothing to be ashamed of in asking for some assistance to help deal with them.

Keep pushing your GP and hang around here for a while as there are a lot of very capable people on this forum who will give you good advice and support.
 

Warrior Mum

Registered User
Jul 20, 2014
39
Cambridgeshire
Thank you

Oh bless plz don't give up my lovely. Your husband is very young so they will explore all avenues . My husband was 60 and it took them 18 month to give a full diagnosis. We went from this to that and back to this and I understand how hard it must be for you and your family . Best to discuss it all with your GP as he must have all the specialists reports and voice your views on the situation . Hopefully someone else will be along with more advice . Hugs to you x


Sent from my iPhone using Talking Point
I can't give up and I won't let myself as all my boys (including hubby) depend in me. Thank you for the hugs XxxxX
 

chick1962

Registered User
Apr 3, 2014
11,282
near Folkestone
I can't give up and I won't let myself as all my boys (including hubby) depend in me. Thank you for the hugs XxxxX
Maybe a diary would be good to write down what your hubby struggles with and what affects it has so you can bring it to next appointment ? Xx


Sent from my iPhone using Talking Point
 

Warrior Mum

Registered User
Jul 20, 2014
39
Cambridgeshire
Maybe a diary would be good to write down what your hubby struggles with and what affects it has so you can bring it to next appointment ? Xx


Sent from my iPhone using Talking Point
I have a journal, to write my thoughts in and a note of hus behaviour during the day, GP seems ok but not sure if she is pushing hard enough.
 

chick1962

Registered User
Apr 3, 2014
11,282
near Folkestone
I have a journal, to write my thoughts in and a note of hus behaviour during the day, GP seems ok but not sure if she is pushing hard enough.
Has hubs had scans and spec scans? My John got diagnosed eventually with early onset of Alzheimer's but last year after more spec scans they found some vascular disease burden too although it's mild still. Xxx


Sent from my iPhone using Talking Point
 

min88cat

Registered User
Apr 6, 2010
581
Unfortunately it appears to be that those who shout the loudest get the most attention!

You certainly have a huge amount on your plate. I would go back to the GP and explain that with 2 sons with problems, you are finding things hard to cope with, and unless she can understand where you are coming from, and get you the help that you need, she will have another patient on her hands!! Dramatic I know, but she needs to listen to you, and I mean really listen!

Good luck, and don't fogprget to keep coming back here for anything you need. There is always someone around- you are not on your own.
 

Warrior Mum

Registered User
Jul 20, 2014
39
Cambridgeshire
Unfortunately it appears to be that those who shout the loudest get the most attention!

You certainly have a huge amount on your plate. I would go back to the GP and explain that with 2 sons with problems, you are finding things hard to cope with, and unless she can understand where you are coming from, and get you the help that you need, she will have another patient on her hands!! Dramatic I know, but she needs to listen to you, and I mean really listen!

Good luck, and don't fogprget to keep coming back here for anything you need. There is always someone around- you are not on your own.
Thank you.

As you can probably understand I rarely get time to get online and try to collect my thoughts. I am unsure whether I should come to Talking point for my hubby's condition. I also look out for my Mum who has Mixed type dementia (Vascular and Alzhiemers) and my dad who struggles with my Mum's condition.

Thank you all for being here for me and a great "Sounding board" to get my thoughts in order.

WM XxxxX
 

Chuggalug

Registered User
Mar 24, 2014
8,007
Norfolk
Thank you.

As you can probably understand I rarely get time to get online and try to collect my thoughts. I am unsure whether I should come to Talking point for my hubby's condition. I also look out for my Mum who has Mixed type dementia (Vascular and Alzhiemers) and my dad who struggles with my Mum's condition.

Thank you all for being here for me and a great "Sounding board" to get my thoughts in order.

WM XxxxX
Most of us find it tough caring for one or two people. You've now mentioned four people. Blimey, Warrior Mum. Somebody needs to take you very seriously. Keep on fighting while you still have the courage. Your concerns need to be on somebody's radar.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,643
Kent
Hello Warrior Mum.

You certainly chose your user name wisely, you have so much on your plate.

Stay with us if you think it will help, whether your husband does have dementia or not. It will be very difficult to get a diagnosis for him at such a young age and the tests may be right.

Even so, my husband was treated for depression for more than a year before he was diagnosed with Alzheimer's and he was 73.

Do try to keep a diary. I understand how difficult it will be for you having such big family demands.