Terrible day and have given in to this and am going private??

[nerak]

Hi still trying to get my head around this HEALTH??SERVICE?? been told mum is on a waiting list could be a year before shes seen by geriatrician?

Was told that her doctor can re refer her as urgent but that would still be a couple of months??

I dont have a couple of months let alone a year I need to know asap what im dealing with here its a disgrace that old people are treated like this??

Was told in a cold uncaring way well thats the way things are now????? what a HORRIBLE way to speak to someone who is in distress no compassion NOTHING?
Have now made an apt to go private and he can see her next week????(and money dosnt talk??)

Am drained and very down so will just have to go this route we will have to think of the money later?? My big problem now is that i havnt told mum its Private and just said hes a specialist for old people and will give you a good overall exam! GULP!

She was ok today in ok mood and will go! So I will have to pay on the QT then tell her later in the week that it was private as i will pay for this out of my unemployment money??

Any ideas dont know how to handle this but need this done she will go mad when she thinks she has to pay but its for her own good and then theres the tests? I wish I could wake up and this was all a nightmare?

 

[RobinH]

Health Service

Hi nerak

Sorry to hear you are having such a difficult time. Are you talking about the Health Service in the UK, or in Ireland? I'm sure in either case there will be good advice here.

 

[Jessbow]

what difference is someone telling you a diagnosis going to make?

Is this UK or abroad?

My mother GP pretty much diagnosed, and got us the help that was available.
We later went to the memory clinic.

I'd have just waited the couple of months, certainly not paid money for something I probably already know.

Unfortunately no Dr can make it much better.

 

[steffie60]

You seem to be an Ireland user, I do not know anything about the Irish system but here in the UK everything seems to stem from the GP. If you think that your Mum has dementia of one sort or another and it is difficult for you to afford to go private then go back to your GP, two months of waiting will go really quickly and the outcome of a private paid for visit to a specialist will really tell you only what you already know. If it is Alzheimer's Disease then there are tablets (more information can be found in the factsheets).

You will find a great deal of information and support on here from people who are at various stages with their loved ones. I have found more information here than from many of the "professionals".

In my case I look after my mother who is 89 she has vascular dementia following a stroke. My mother is in denial and would be furious with me if she knew about the private sitter who comes once a fortnight for an hour to chat and socialize. Just someone different form me. It is of course not enough but it is what we can afford and what Mum is prepared to put up with.

If your mother is more of a sociable type there may be lunch clubs or day centres in your area where you could get more support. Is there an Alzheimer's support group in your area. You will not get these answers from a geriatrician and as to the tests if your mother is anything like my mother who resented being asked such daft questions then the scoring system will not help you.

Finances are obviously tight for you, do you get attendance allowance where you are? If you have a voluntary group similar to Age UK they will be able to help you get a handle on what financial support you can get from your Government.

Unfortunately the nightmare does not go away, it changes as your loved one changes. In the early days of my mother moving in I was given a bit of advice which has been great value to me. Do not accelerate any situation into challenging behaviour. If something is going to upset your loved one divert the conversation or tell a little white lie. I use this advice constantly and my mother has a fairly unruffled existence. I hope this will help you also.

Go back to your GP, make a double appointment time if necessary, take a question list with you if it will help and hopefully they will be able to clear up some of your fears.

 

[Jo1958]

Nerak, hi
You've had some good, thoughtful responses so far which I hope helps, I would only add that it can be difficult to get back into the NHS or any health service once you have gone private, it seems to be seen as a statement that that is the way you want to go forward and therefore all tests, medications and future appointments will be private, so as long as you are aware and happy to go this route then I hope it works for you both. If not then I would cancel and wait the two months.

As Jessbow mentioned getting a diagnosis isn't the end of the journey, it is simply another stage and doesn't change much in reality, I hope you can built a really good and supportive relationship with the health professionals whichever way you go.
I look forward to hearing how it goes, with best wishes from Jo

 

[rajahh]

I agree about the diagnosis not being important. It has made very little difference in my life caring for my husband, except a Day Centre was arranged for one day a week which we have to pay for.

I also agree about the difficulty in coming back into NHS after going private for consultation.

If you are using your unemployment money it sounds as though it is a very risky business for you.

Just ask the GP to mark it as urgent and wait the 2 months.

 

[1954]

I know how you feel because I was in the same situation as you are in. I was desperate for my MIL to get the memory clinic appointment. In fact I called them a few times as I was so worried. However, I have to add it gave me the diagnosis that I already knew but it made no difference at all. I felt happy to have the letter confirming her diagnosis as many did not believe me and my fears

Two months seems like a life time but believe me it will go fast. Get the GP to refer you urgently like others have said

I hope things work out for you

 

[end of my rope]

Hello Nerak

Understand your frustration but a diagnosis probably won't make a difference to your day to day routines of care and anxiety.
I went through the "I need to know what this is, I want to know what I am dealing with" stage several months ago. It's perfectly natural for us to want some sort of definition and yet there is very little that doesn't ebb and flow and shift within dementia. The response from the consultant was patient, caring but vague - "it's dementia, possibly Alzheimer's we can only say Alzheimer's definitively by conducting a post mortem examination of the brain". Furthermore dementias and their signs, symptoms and prognosis are fundamentally unique to each individual.
Save your money and stay within the system.

Best of

eomr

 

[Noorza]

Another one here who has had the diagnosis but has made no difference. They can't medicate her because of heart and kidney problems. They can't do the full scan because of her pacemaker. It does help me to understand her moods, her violence, her temper which makes me more compassionate so for that I am grateful. But it has only confirmed what I already really knew.

 

[lin1]

Hello Nerak
I agree it IS a disgrace that people are treated like that .

I understand your need for Mum to see a specialist and if it is Alzheimer's or Alzheimer's type of dementia , their is the possibility that medication could slow it down and help ease some other symptoms plus it may enable you to get help etc

It took us a few yrs to get mum diagnosed , its a long story that I won't go into here except to say , mum was diagnosed with everything but dementia, by the time we did get mum diagnosed she scored 12 on the MMSE and until the right diagnosis we were left to drown.
sadly TP wasn't around then to help us

As others have said if you go private to get a diagnosis , it may not be easy or even possible for Mum to be treated on the NHS
also if the private doctor wants brain scans done I dread to think of the cost
it would be a good idea to discuss all the above before you commit to going private
I doubt if your Mum has a bottomless pit of money and you certainly don't , I would get the go to re refer Mum as urgent

((((((HUG))))))

 

[Nebiroth]

Whilst it is frustrating it is also understandable. It sounds horrible but the sad truth is that people with suspected dementia who are without serious issues (for example, behavior that makes it difficult to care for them, or engaging in dangerous activities like wandering or leaving gas fires unlit, etc) are not considered a priority - because, frankly, they aren't.

Sadly, it is possible for most GP's to make a reasonably secure diagnosis of for example Alzheimer's; they can perform or arrange the tests that eliminate other possible causes of the symptoms and once that is done it is there is very little more than a specialist or consultant can do - the most likely thing is that they will simply confirm the initial diagnosis and possible offer a treatment which at the very best outcome offers a slight and temporary alleviation of some of the symptoms

In short, a referral to a consultant usually means just confirming what you already know and also confirming there is little to nothing that can be done about it

 

[Fed Up]

Around here the waiting time for my mum was not an issue as was admitted to hospital after a fall etc. Hers is a sad story who'd want to get old in the UK now, but do disagree with getting back into the NHS after going private as the same doctors see you. I've had tests on BUPA and the prescription was cheaper private that on the NHS. That was a shock £9.00 for tablets to keep RA at bay. Worth every penny and the monitoring is done by blood test on the NHS. I think it may depend on where you live.
Anyway the real point is why should we pay for something that should really be routine and a service readily available. I think if you choose to go private it is a lifestyle choice not something to undertake lightly as can be very expensive unless insured.
I'm all for waiting if your on UB private can't really be an option in the long term can it?

But time will pass quickly and who knows perhaps mum might need to go to A&E where a dr might ask questions and you can explain if you get my drift. Around here that seems to be common practice when my mum was admitted the dr took me outside the A&E and said you look very tired go home and get some sleep and leave her to us. We know the situation and whilst in hospital an examination can be carried out. And I know someone whose GP said take him to the A&E and leave him there.
I hope that makes sense and that all goes well.