Waiting on a diagnosis

LifeInLimbo

New member
May 16, 2023
7
0
Hi, I have been desperately trying to get a diagnosis for my 62 year old husband but am not getting anywhere fast. Still waiting for a call from the memory clinic and have only been waiting 2+ years. Can't get to see GP either it's all so frustrating. Worse thing is his decline. Half the time he doesn't even know where he is, what day it is and is even forgetting who I am and who his children are. I hate seeing him so vulnerable and unable to get him any support. Anyone else struggling to get a diagnosis?
 

canary

Registered User
Feb 25, 2014
25,048
0
South coast
Hello @LifeInLimbo

Thats an awful long time to be waiting for the memory clinic. I wonder if something has happened, like them losing the referral or something? I really think you need to chase this up. Could you find the number for the memory clinic secretary and phone them? You might be asked to leave a message on the answerphone. You could also phone the GPs surgery and say that you still havent heard.

In the meantime you can still ask Social Services for a needs assessment, even without a diagnosis, and I strongly recommend that you do. A diagnosis will open some doors, but its SS who can organise a lot of practical support once you get to this stage. They can organise things like carers, day care and respite (both at home and in a care home)

Unfortunately, there is not a lot that can be done about the symptoms that you describe, although there is medication to calm them if they get anxious, distressed or aggressive.
 

Angel55

Registered User
Oct 23, 2023
148
0
Hi, I have been desperately trying to get a diagnosis for my 62 year old husband but am not getting anywhere fast. Still waiting for a call from the memory clinic and have only been waiting 2+ years. Can't get to see GP either it's all so frustrating. Worse thing is his decline. Half the time he doesn't even know where he is, what day it is and is even forgetting who I am and who his children are. I hate seeing him so vulnerable and unable to get him any support. Anyone else struggling to get a diagnosis?
Hello 💕

It does take a while. We received a formal diagnosis recently after probably I would say 2-3 years maybe a little more but ours was quite complex in its situation.

A diagnosis does not prevent support you can still apply for attendance allowance for example and access help. I think someone has mentioned a needs assessment. You can also ask for an OT assessment through the gp usually for things to help around the home.

Sometimes you have to make a nuisance of yourself. If you have the memory clinic number give them a call, (we asked for a cancellation). Quiet persistent polite determination is how we went about things and we did not give up.

What did diagnosis change? Dad is now is residential care. He is taking a tablet (I forget the name of it) but I cannot see any improvement really. We also were sent a lot of leaflets but they were more directed at home care so a bit late for us. We have found an admiral nurse attached to the care home and she has been helpful but other than those things nothing else has changed. We are still caring just differently now.

Hopefully you will get an appointment soon. x
 

Bevvywevvy

Registered User
Nov 22, 2023
50
0
Hi@lifeinlimbo
Sorry i cant work out how to highlight your name.
I feel for you on the lack of a diagnosis, it's upsetting not to really really know, when, deep down, you really really know! That's my feeling, in the same boat as you, different journey,eh?
The struggle in our house, is that it's my daughter who is suffering from...
When will it be named?
She has declined shockingly in recent months. She won't leave her room, which now has a tub chair,and an overbed table pulled up to her seat.
She spends a great deal of time daydreaming and cursing under her breath. Ive managed to find a pastime(she never enjoyed before).she now likes to colour in junior colouring books. She seems to "see" things and react with fear,anger,tears..that seem false. Oh how my cheeks have reddened with some kind of shame even as i type this, it feels as if im betraying her! She has suddenly forgotten how to use cutlery, and baffles me with many changes to her food preferences. So many symptoms of... some are atrocious!
I hope something happens for you soon, diagnosis wise. We soldier on regardless, don't we?!
 

canary

Registered User
Feb 25, 2014
25,048
0
South coast
Oh how my cheeks have reddened with some kind of shame even as i type this, it feels as if im betraying her!
There is no need for shame @Bevvywevvy - these are things that happen with dementia. And you are not betraying her - you are telling a group of people in a similar position what it is like. It is OK to do that.
 

nitram

Registered User
Apr 6, 2011
30,255
0
Bury
Sorry i cant work out how to highlight your name.
Type @ followed by username without a space.
A dropdown of usernames will appear, keep typing name until it appears in the list.
Click on name in list.
Depending on members settings they will get an alert that they have been mentioned in a post , default setting is on.
 

LifeInLimbo

New member
May 16, 2023
7
0
Hi@lifeinlimbo
Sorry i cant work out how to highlight your name.
I feel for you on the lack of a diagnosis, it's upsetting not to really really know, when, deep down, you really really know! That's my feeling, in the same boat as you, different journey,eh?
The struggle in our house, is that it's my daughter who is suffering from...
When will it be named?
She has declined shockingly in recent months. She won't leave her room, which now has a tub chair,and an overbed table pulled up to her seat.
She spends a great deal of time daydreaming and cursing under her breath. Ive managed to find a pastime(she never enjoyed before).she now likes to colour in junior colouring books. She seems to "see" things and react with fear,anger,tears..that seem false. Oh how my cheeks have reddened with some kind of shame even as i type this, it feels as if im betraying her! She has suddenly forgotten how to use cutlery, and baffles me with many changes to her food preferences. So many symptoms of... some are atrocious!
I hope something happens for you soon, diagnosis wise. We soldier on regardless, don't we?!
Hi @Bevvywevvy thank you for your reply and I am sorry too for your daughter's plight. I agree with @canary there is no shame in what is happening to our loved ones and you are definitely not betraying her by seeking support here. The only thing, apart from heartbreak, we should be feeling is frustration. It's disgusting that we cannot get a timely diagnosis and support and it only compounds to the suffering we are all going through. Although I am new here, I am finding reading other people's messages really helpful as it makes me realise I am not alone in this struggle. Let's hope both of us get some resolution this year so we can move forward in supporting our loved ones. Always here if you need an ear.
 

LifeInLimbo

New member
May 16, 2023
7
0
Hello 💕

It does take a while. We received a formal diagnosis recently after probably I would say 2-3 years maybe a little more but ours was quite complex in its situation.

A diagnosis does not prevent support you can still apply for attendance allowance for example and access help. I think someone has mentioned a needs assessment. You can also ask for an OT assessment through the gp usually for things to help around the home.

Sometimes you have to make a nuisance of yourself. If you have the memory clinic number give them a call, (we asked for a cancellation). Quiet persistent polite determination is how we went about things and we did not give up.

What did diagnosis change? Dad is now is residential care. He is taking a tablet (I forget the name of it) but I cannot see any improvement really. We also were sent a lot of leaflets but they were more directed at home care so a bit late for us. We have found an admiral nurse attached to the care home and she has been helpful but other than those things nothing else has changed. We are still caring just differently now.

Hopefully you will get an appointment soon. x
Thank you @Angel55 you have given me food for thought and I will definitely be following your advice. Many thanks
 

LifeInLimbo

New member
May 16, 2023
7
0
Hello @LifeInLimbo

Thats an awful long time to be waiting for the memory clinic. I wonder if something has happened, like them losing the referral or something? I really think you need to chase this up. Could you find the number for the memory clinic secretary and phone them? You might be asked to leave a message on the answerphone. You could also phone the GPs surgery and say that you still havent heard.

In the meantime you can still ask Social Services for a needs assessment, even without a diagnosis, and I strongly recommend that you do. A diagnosis will open some doors, but its SS who can organise a lot of practical support once you get to this stage. They can organise things like carers, day care and respite (both at home and in a care home)

Unfortunately, there is not a lot that can be done about the symptoms that you describe, although there is medication to calm them if they get anxious, distressed or aggressive.
Thank you @canary, I agree its way too long and it's so frustrating trying to get through to the GP to chase it up. I'm getting to the point where I figure a diagnosis is irrelevant as reading a lot about different forms or dementia and following these threads has taught me that there is not actually much we can do for whatever form he has so I am putting all my energy and effort into supporting him to make his life happy and comfortable, whilst trying to manage his business, which he can no longer contend with. I will keep following on here and will be taking on any advice people have to offer. Many thanks
 

canary

Registered User
Feb 25, 2014
25,048
0
South coast
I'm getting to the point where I figure a diagnosis is irrelevant as reading a lot about different forms or dementia and following these threads has taught me that there is not actually much we can do for whatever form he has so I am putting all my energy and effort into supporting him to make his life happy and comfortable
It is true that there is little that can be done in the way of treatment, but a diagnosis of any form of dementia can open doors for support or if there are symptoms that need medication - especially in the later stages.

As someone whose OH does not have a diagnosis (long story) I know that although its manageable in the early stages, now that OH is progressing it is becoming much harder to access relevant support
 

LifeInLimbo

New member
May 16, 2023
7
0
It is true that there is little that can be done in the way of treatment, but a diagnosis of any form of dementia can open doors for support or if there are symptoms that need medication - especially in the later stages.

As someone whose OH does not have a diagnosis (long story) I know that although its manageable in the early stages, now that OH is progressing it is becoming much harder to access relevant support
@canary so sorry you are in the same boat as me; frustrating isn't it. To add to this, I have had to give up my teaching job to take over the running of his business, which is now in a state due to it being mismanaged, unfortunately something I was unaware of. I am now having to sell our home to prop up the business. It's hard trying to juggle the complications of this with the needs of my Oh but you just have to get on with it don't you. I really am finding solace in this forum. It has saved me, many at time, from going insane when I read how other people are managing/struggling with this horrendous illness. I've really struggled emotionally with this and have been beating myself up for being short tempered with him, but having read a lot of other comments on here, see that it is just part of the course. It is so supportive and I am thankful for the honesty being shared on this forum. Definitely my go to place now when I feel like I'm losing the plot.
 

Pebblepebble

Registered User
May 29, 2022
45
0
I do feel sorry for you. I have just discovered that my Mum was offered an appointment for a scan and she refused it. None of us knew about this but we just thought it was taking time. In fact it was only a few months after her memory test (which was about 10 weeks after the doctor referred her to the memory clinic). I'm livid. Mainly she could be on medication to help her memory issues. In addition I'm not sure where to go from here having been told by AgeUK and someone else who was supposed to be able to help that we cannot claim AA without a formal diagnosis.
 

canary

Registered User
Feb 25, 2014
25,048
0
South coast
I'm not sure where to go from here having been told by AgeUK and someone else who was supposed to be able to help that we cannot claim AA without a formal diagnosis.
That is not true. It is probably easier if you have a diagnosis, but you can get it without.
Here are the government guidelines for claiming for AA and nowhere does it say that you need a diagnosis
 

SharoH

Registered User
Nov 7, 2023
28
0
Hello @LifeInLimbo
Has your husband had an assessment at the memory clinic, or a head scan?
The reason I ask is that my OH was referred to the memory clinic for an assessment by our GP in December 2022 & around March the following year we hadn’t heard anything. It turns out the assessment team had tried to call my OH several times but he would not answer his phone so they discharged him. Needless to say, I had to start the ball rolling again but this time using me as the contact.
I think you have been waiting far too long and I agree with @canary that you should chase it up.
 

Keel73

New member
Jan 11, 2024
1
0
Hi, I have been desperately trying to get a diagnosis for my 62 year old husband but am not getting anywhere fast. Still waiting for a call from the memory clinic and have only been waiting 2+ years. Can't get to see GP either it's all so frustrating. Worse thing is his decline. Half the time he doesn't even know where he is, what day it is and is even forgetting who I am and who his children are. I hate seeing him so vulnerable and unable to get him any support. Anyone else struggling to get a diagnosis?
Hi I have just joined this evening as I’m having the same issue with my dad, after my mum not getting anywhere & in a bit of denial I emailed the doctor in April 23, they did call my mum & tell her they would refer him but then heard nothing again, so 1 of my older sisters emailed the doctors in July … nothing! So my other sister emailed in October & they called my mum again & said the appointment will be early next year!
The decline we have seen in him with his memory over this time is pretty scary.. he still insists he can drive & went to get a birthday card & lost the car.. luckily we put it on Facebook & found it 3 days later! I really feel your pain, it just makes you wonder if they were seen quicker the treatment could have been started & the decline could have been so much slower. I hope you get good news soon, your not on your own