Do we need to be proactive - or are we clutching at straws

[a_daughter]

My mother has now been in the retirement home for 5 months. Her deterioration has been dramatic - or maybe we didn't know how bad things were before she went there.

She cries, grizzles and sometimes screams about the pains in her back. She has arthritis in her back but her doctor (a new one since she went into the home) stays that all the tests (there have been many) have been done and there is no way that she is in that much pain.

So, it's all in the mind. The CPN was coming in about every four weeks and tweeking the medication. Anti phsycotic and painkillers, then no anti phsyc and anti depressants instead. We are no way forward.

The doctor doesn't want to know - just tells her to concentrate on something else and the CPN has left her job and her departing words were "she will be allocated to someone else".

The care in her retirement home is fine, no complaints there, but they are just as much at a loss as us to know what to do about her distressed state.

So, we have decided today to pay privately to see a consultant (I suppose a geriatric psychiatrist) to see her and sort out how to treat her mental condition. I understand that this involves her being taken into a hospital or unit, all her drugs being stopped, and then starting from the beginning again.

It will cost. But the money she has is set aside for her retirement home anyway. The sooner that goes the sooner the state take over, so in effect it costs us nothing! Ridiculous!!!.

Do you think this is the right course of action. Or are we still not accepting this horrible disease and fooling ourselves.

 

[Áine]

oh what a nightmare for you. what a difficult position to be in, not knowing what the pain is, whether it's physical or psychological or what to do about it.

i think there's been a thread not that long ago about AZ and pain thresh-holds which maybe someone else will remember better than me.

i don't know that there's any RIGHT course of action as such, but I guess if it were my dad I couldn't have left him, wondering if he were in pain or not.

 

[jenniferpa]

My, isn't that doctor Mr Sensitivity? Think about something else? Honestly, I despair, I really do. I have a little story to tell, so you'll see where I'm coming from

When my son was 10, his father managed to run over his foot with the car (the man drives me crazy sometimes). Not broken, seemed to be healing fine, then within a week the pain increased, within a month my poor little boy was bed bound and even a sheet touching him caused pain. We quite quickly got a diagnosis (RSD aka CRPS) even got treatment, then the doctor left and the hospital in question would not go on treating him. It went downhill from there. For over a year I struggled to get a doctor to treat him: we had a diagnosis of psychosomatic illness, munchausen by proxy (you can imagine how that felt) then back to psychosomatic again. The fact remained even if it was all in his mind, he was still in agonising, excruciating pain. I finally referred myself to a recommended child psychiatrist convinced by this time it was all my fault. His diagnosis: no evidence of psychosomatic illness and he referred us to a neurologist 800 miles away to took these kinds of cases. Result: yes, it was RSD and 2 years after it all started he was back in school, 7 years later he's fine. Incidentally, the doctor in question had suffered from this condition himself.

The point about this long screed is: the psychiatrist told me that many, perhaps most doctors, if they can't find an easy fix, are only too inclined to say "it's all in your mind". Nerves are funny: they can send ridiculous messages to the brain that the brain interprets in many different ways. Simply because there's nothing that shows up on tests does NOT mean that there is nothing wrong. There ARE no tests to tell if a nerve is misfiring and sending out strange signals: amputees get these "mixed messages" quite frequently.

I'm not saying that it's always possible to get a resolution to these problems, but absolutely, you should not give up on trying for one.

Love

Jennifer

 

[Grannie G]

Hi a_daughter,

What a dreadful predicament for you and how awful to see your mother suffering so much.

All I can say is if you try everything you`ll have no regrets. I know this disease keeps throwing things up in our faces that are so hard to cope with and accept, but when it comes to pain and obvious distress, we can`t just watch and do nothing, unless we are told there is nothing more we can do.

Even in Hospices, with the pain of terminal cancer, medication is available to ease the suffering.

I think you are right to try to do all you can. I hope you succeed in finding a way to help your mother through her apparent agony. These cries for help, whatever their cause, are being listened to.

I wish you well. Love Sylvia x

 

[Skye]

What an awful situation. It must be terrible listening to your mother crying and screaming, and not be able to help her.

You seem to be getting very little professional help. I can understand your wanting to have her assessed, but I can't understand why you have to pay for it. Does your mother not have an NHS consultant? Either you or the NH can ask for a reassessment at any time.

I do hope you manage to get to the bottom of the problem, one way or another.