Neurology, bottom of the heap!

[Heady]

Hi, just come back from S's latest visit to the Neurologist. It was in our brand new hospital, just being finished here in the SW of England. What fun I thought! Wrong again. Only a few old buildings left, from the old Victorian time of the hospital, yes you are all correct. That's where we had to go. No signs to tell us where we had to go, so parked in the main car park, had to get a bus to the main building, bus stop open to the elements, thankfully lovely day here, then we had to walk 10 minutes to the Neurology department. Again thankfully not raining. There was a car park outside, but only small, 2 places for disabled people and no drop off area. Inside was not pleasant, no money has been spent on it for years. The main hospital, looks like a huge fancy airport terminal. I dread to think how many billions have been spent on it!

So how, how can we ever hope to find a cure for any of these horrible neurological diseases, when they can't even house the department in a decent building for the staff and patients. Just because a lot of the patients can't see, not with it anymore, don't care, don't notice, that is no excuse to treat them with such utter disrespect. I went into a disabled toilet in the main building, well, the toilet was made especially for obese people, it was huge!!! Must have been 3 foot wide. If people like that, who let's face it, the majority could have helped themselves, long before they got into that state, can have their dignity preserved, why can't we at least have a drop off point for the Neurology Department.

Sorry, I know I am preaching to the converted, but I've got to moan to someone. Although, I will be writing to the hospital and probably the Prime Minster, he has taken an interest in Dementia recently!

Lots of love

Heady

Ps the visit went well, only had to wait an hour to be seen! But S seems to be stable, with their little tests!

[NannaB]

Sorry you had such an awful experience and hope, with a new hospital, the neuro dept will one day be in the new hospital. We live within a 10 minute walk of a super duper new hospital but I have to go by car as I can't push my husband up the steep hill. We have never had to wait as the neurologist holds Saturday morning sessions to keep waiting times down. We always go in within minutes of arriving. The last time we went, however, he said he could see it was an effort getting my husband there and as there was absolutely nothing he could do for him, would we agree with him that it wasn't worth going any more. He said if we ever wanted to see him, we could but he didn't see any point. We agreed with him.

At a PSP conference last year, I asked where our brains would go that we had promised for research when we die. We were told there are 5 research labs in England and they could go to any of them, whoever wanted them at the time, so hopefully, although some of our hospitals are still Victorian, money is being spent on research.

I hope your next visit is easier.

Nanna B

[marytea13]

Hi Heady I go to different neurologist tomorrow have been told already 1 hour so have to pay for parking in basement that's ok!

What do u mean 'S is stable' ? please Mary

[Heady in reply to marytea13]

Hi Mary, S is quite well and has been for a while, touch wood!

Love Heady

[suziewong]

I too am sorry that you had a bad experience. What tests did they do.

We too went to the Neurologist and saw a new one for our area just over of the Welsh Border, as we had been going cross county. This experience left us both feeling traumatized. We were asked if we understood about the disease and we said we understood it was terminal with no cure or treatment. All the neurologist could keep saying over and over was " Terrible, terrible. it is a terrible disease. Just terrible! " He went on in that manner the whole time. He then said that in some cases the disease progressed slowly, but that in my husband"s case things had deteriorated rapidly.

He had nothing positive or helpful to say and my husband was so stressed by the visit that he was convinced he was going to die imminently. We all know it is a horrible disease but do not need someone to keep on over and over telling you what we already know. He needs some serious people skills. A few words to the effect that although there is no cure or treatment we (the Multi Disciplinary Team) will do all we can to give you as good a quality of life as is possible or words to that effect instead of total negativity. I don't know what the aim of the visit was except to try and break us.

At least your neurologist seems ok even if the environment is lacking.

Best Wishes

Suzie

[Heady in reply to suziewong]

Oh Suzie, how awful! I know what you mean about feeling worse when you come out. Yes, our young neurologist was very pleasant, but what can she do? You waste all that time, spend an enormous about of effort getting to these places, treated like something the dog dragged in, for absolutely nothing!

The tests S had to do, were the Alzheimer's tests, they are giving him some pills that they use for this, some new thing they are trying! It working a bit, the apathy is not quite as bad! Nothing dramatic, but all any improvement is welcome, no matter how small. Still feel as though I have been kicked in the teeth though!!!

Lots of love

Heady

[suziewong in reply to Heady]

Thanks for your reply. They haven't done any tests for my husband and have stopped most of his medication as it was having bad side effects. I will have to ask about that though. Anything is worth a try even if there is only a small improvement it would be worth it.

I am so glad of this site. Just knowing there are others who understand what you are going through is a help.

I have the vicar coming around next week to discuss funeral plans as my husband wants to sort this out while he is still able to have some say in what he would like, although hopefully we haven't reached that stage yet.

Lots of love

Suzie

[wifemo in reply to suziewong]

Hi Suzie -

Being positive while you are still in control counts for a lot. Have you sorted out a Power of Attorney? After we lost Tony, sorting out PoA and a Will for myself was the first thing!

Sorry you had such a negative experience with the neurologist - sounds as though he might be in the wrong job? At least we're all thinking of you and willing you on in the battle.

Mo

[suziewong in reply to wifemo]

Hi Mo. Yes we have applied for POA still awaiting. Wills need to be updated due to moves etc. Yes, have to stay positive and take things one day at a time.

Glad we can all support each other.

Suzie

[zjillian]

Speaking of Neurologists....Has anyone as care-giver ever been asked How are You doing? Our latest neurologist looked at me angrily, when I looked a bit sad and said "do you think Christ had fun on the cross?" I mean, what can I say to that? I really just wanted a tiny pat on the back or a "there there".

Jill

[quickgel in reply to zjillian]

Hello Jill, one thing you can do is ask to be referred to another neurologist citing this offensive, inappropriate, unhelpful and irrelevant remark, as your reason. I certainly wouldn't have confidence in an individual who referred to a deity during a medical consultation, particularly one who inferred my stoicism didn't match that of Christ on the cross.

For the record I have no faith but that is no business of a neurologist. Regards and best wishes, Jerry.

[zjillian in reply to quickgel]

Thank you for your reply. I really appreciated it. Jill

[Heady]

Hi Jill, I totally agree with Jerry, it's disgraceful what your neuro said! I don't know your religion, but I'm guessing not that strong, but what if you did have very strong views, or were a Muslim etc. etc.!!!

As to waiting for a pat on the back - surely you have been around long enough to know us carers don't exist, or at very least, only put on this earth to do what we are doing!

Half the time I think, we should go to see these consultants. There are lots of things I would like to say, but don't as I don't want to say it in front of S! I wonder when was the last time a carer was called to go and see the GP, I'm betting, never! Yet they expect us to carry on regardless!!! We are meant to be the unsung heroes, but nobody knows what we go through, nobody cares, just as long as we keep doing it! Then get treated like a failure when any one of us hits the brick wall. The hoops you have to jump through to receive any help is terrible, even if you know which hoop to choose. Again, nobody tells you they are even there. All I get is, call us if you need help. But what help is out there? What can I get help with? Again, they only talk to S and he thinks and tells them, everything is fine and he will be better soon! So what hope is there, because they believe him!!!

Lots of love

Heady

[zjillian]

I am so glad you replied. I always start thinking that I am not as cheery, perky, up-beat, positive, loving, all enduring, kind, sweet, grateful, accepting, nice, pleasant, and then PAY the man $100 for the opportunity of being further abused by a doctor I know more than and remember not to challenge him or complain or......