A life in the day of.........................

[Grannie G]

Hello Joanne.

Dhiren takes Trazodone, 50 gr a.m. and 150gr p.m. He has been on this since June 2006 and the dose has been increased each year.

Previously he had been taking Maprotoline but it caused hallucinations.

He was put on anti-depressants pre diagnosis and they continued post diagnosis.

He has really been depressed for 9 years but it was not recognized.

 

[Tender Face]

And I haven`t taken his diet seriously enough.

Sylvia, I am going to get cross with you .... in the kindest way!

Where was I at a month ago with my mother's weight loss .... and how you helped me? Beating myself and blaming myself .... I should have seen this - I should have done that - I should have known it was this and not the AD etc etc etc ...... we can't do this .... we are not medics - we are people who care with a passion ..... and have done our best ...... we can't defy what is happening ..... I can't help the docs said it was an infection and I sensed more but didn't beat down doors earlier ... I am human - I've done my best .... and right now mum is in the right place for her needs as well as mine .... as is Dhiren ...

Now if I catch you online again this late there really will be trouble if you ever tell me again about not getting enough sleep!!!!!

Pleassssse, Sylvia, take this chance to get some rest (I know it's hopeless saying to get sleep!)

Love, Karen, x

 

[jenniferpa]

Sylvia - not meaning to second guess the medics, but trazadone is not as generally prescribed now as some of the newer SSRI (selective seratonin reuptake inhibitors). This is not to say that it might nor be perfectly appropriate for Dhiren - it has a sedative effect that might be worthwhile in the evening. On the other hand, it has a sedative effect rolleyes that might not be a good idea the rest of the time. I suppose I do feel the GPs in particular are inclined to prescribe what they have prescribed before and that may not always be such a great idea. Still I would agree - fix one med at a time.

Love

 

[Grannie G]

Thanks Karen and Jennifer.

Karen.... I know, I know, I know......
I do wish it had been explained to us how diet affects the confusion of diabetics. We cannot be expected to know. I haven`t read about this issue anywhere.

Jennifer....the morning dose was prescribed to try to curb Dhiren`s restlessness during the day, when he would visit banks and railway stations. And it did settle him [ a little ]for a good while.

But the more I think about it, the more sure I am, the decisions made yesterday may not be the best.

 

[Skye]

Dear Sylvia

This juggling medications is so complicated when there are two conditions being treated, and you don't know what's at the root of the problem. It makes sense to me to change obn'y one, and wait to see the effect -- but then I'm not an expert.

I hope Paul manages to sort things out today.

And I agree with Karen -- get some sleep!

Love,

 

[Grannie G]

Thank you Hazel.

I have spoken to another doctor`s secretary. Our consultant`s secretary will not be in till tomorrow.

I have given her Paul`s phone number and she will pass the message on. [I hope].

I have phoned the ward and been told Dhiren is happier today. I`ll see for myself this afternoon.

I`ve asked to see someone for a breakdown of the hospital menus, when I visit this afternoon. I want to know what they are giving him and what size portions.

And I see a solicitor tomorrow morning re registering the EPA. I had intended to get my hair cut, I look like a witch, but.....

There is so mych warmth and sincerity in everyone`s posts. I`m so grateful.

Love xx

 

[Skye]

Haircut tomorrow! And how about a facial......and a manicure.....a half-day pamper session?

Go on, you deserve it!

(Don't believe you look like a witch, anyway!)

 

[Grannie G]

Haircut tomorrow! And how about a facial......and a manicure.....a half-day pamper session?

Is that what you do Hazel, in between visits.

 

[Sandy]

Dear Sylvia,

I hope you have a good visit today and get some useful info on the dietary regime at the hospital.

The good thing about adjusting variables (medications/food/exercise) in the treatment for diabetes is that you can monitor the results via the blood sugar readings so you get real quantitative data that you can compare with more qualitative feedback.

That is if Dhiren has had blood sugars consistently in the 4 to 7 mmol/l range (excellent control) over a few days and his moods have been more stable, then you might have some sense of how the two are linked.

Take care,

Sandy

 

[sue38]

Dear Sylvia,

On my Dad's ward (which is of course a general medical ward rather than a psychiatric assessment ward) they keep a chart of all food and fluid taken by him during the day, including what he ordered and what he actually ate. It's not always filled in as it should be and sometimes for lunch will just say 'Soup and sandwich' or 'full diet'. Funnily enough he has porridge for breakfast which he's never had in his life because he can't stand the stuff. He must have forgotten... Do they have anything like this on Dhiren's ward? The sheets are not complicated and would take a matter of seconds to complete after every meal.

It's intersting that Dhiren seems 'sharper' since going in to the unit. We also think that my Dad's speech is better and he seems less confused. We wondered whether it was the increased stimulation i.e. seeing different people all the time, nurses always busy, something always going on...

The tests for the UTI have come back negative, and so we think it is the biopsy wound on his leg that became infected and caused the high temperature and increased confusion. The doctor is now saying that he can't be discharged until we have the results of the biopsy, but that is being dealt with by a different hospital.

I agree with what the others have said about changing one thing at a time. We had this when my Dad was first diagnosed. He was taken off the anti-depressants and put on Ebixa. There was a slight improvement but we couldn't say whether this was down to the Ebixa or stopping the anti-depressants which can of course lead to confusion as a side-effect.

I'm not suggesting that the medics ganged up on you, but it must have been hard, when faced with several of them all in agreement, for you to cast doubt on what they were saying. It sounds like you were steam-rollered in to agreeing with what they were suggesting, without being given the opportunity to think things through or discuss them with Paul.

Ideally you and Paul should meet with them together. I find that if only one of us is there, the others then say 'what did they say about so-and-so' and you think 'oh heck I forgot to mention that!'

I hope you find Dhiren well today.

 

[CYN]

Dear Sylvia.

I have been away and have just spent what seems to be all afternoon reading about your trauma of the last few days.

I also am so very sorry that you had the shock of the sudden turn in events , You had been an absolute star the way you had coped with Dhiren.
I hope things will settle down and you get your wish and have your man back home.
take care of yourself.

Love Cynthia x x

 

[twinone]

Admiral Nurse

Dear Sylvia

I just want to say that I think the Admiral Nurses are wonderful. When I brought Steve home from hospital I was put in touch with an admiral nurse who came to see me every week. I am still seeing her 7 months after his death as she feels that I still need her and will continue to visit me until we both feel that I can cope alone. I hope that you find your admiral nurse as much help as I have. I know you have Paul who you can discuss things with, I am also very close to my son and sister but I found I could talk about different things with Mary as she is used to dealing with carers who have and still are looking their loved ones with this kind of terrible illness.
Hope you get your husband home with you soon.

Love
Janet

 

[gigi]

Hello Sylvia,

Haven't had much time to post..but I read your thread...

There is such a lot for you take in..it's early days..

I have no advice as have never been in this situation with Eric..

Keep your lines of communication open with the staff..discuss your thoughts/doubts/fears with them..and with Paul.

Dhiren is safe and cared for..if unhappy at times..

But he was unhappy at times at home, too...

Try to use this time to rest and work things out...but rest mainly..you need that break...

Love to you and Dhiren...gigi xx

 

[connie]

Dear Sylvia, you have received so much support and advice there is not much I can add.

Sorry that things came to a head like they did, but you have to find a positive from every situation.

Maybe now, when you have Dhire back home with you, God willing, you will be able to tap into any services that are available to you both.

Stay strong, thinking of you both. Love n'hugs,

 

[Grannie G]

Thank you , thank you, thank you....

It was such a diificult day.

I was met this afternoon by a grumpy, argumentative, tearful and very confused Dhiren.

• 
  he had been abandoned to rot
  I didn`t love him any more
  I didn`t trust him
  I thought he would hurt me
  why would he kill me, he hadn`t killed anyone on the ward
  Paul was `in it` with me
  he was starving
  he had no clothes, only those he was wearing
  all he wanted was a hot meal and a hot bath
  he had no money but it was all right as the train is free
  he went to get the train but thought I would worry
  he wanted to go for a walk but was frightened of getting lost
  he never got lost in Manchester
  he asked me to buy him a little hut to live in
  he wanted a divorce
  this place was like a concentration camp
  he is not mad

We cried together and it took 2 hours for him to be calm.

The doctor came. He would see Paul. Paul came to the ward.
The diabetic nurse came.

There is nothing wrong with his diet at home. The medication allows for treats.
His pancreas has stopped functioning .
His metabolism is confused.
The confusion caused by AD clashes with the confusion caused by diabetes.
The medication would be increased and dosed 3 times daily instead of twice.
There is no crisis, the averages of his reading are good.
He has been diabetic for 18 years. The average diabetic goes on to Insulin after 10 years, so we have done well.
Insulin has not been ruled out.
There is nothing to worry about.

Paul talked to the doctor.
Trazodone has been stopped.
A very low dose of Amisulpiride has been started.
Dhiren is being left alone now to allow medics to observe how he manages alone.
I have been asked to take him out tomorrow for a couple of hours to see how he behaves with me.
Paul will come to support me.
If he cannot be persuaded to return help will be available.

Dhiren has agreed but I know he doesn`t know what he has agreed to.
We will go along with it. We will not knock it until we have tried it.
We will wait and see.

 

[Brucie]

Sylvia,

such a difficult time for you, and for Dhiren. Like starting a crossing over a strange bridge in fog.

We will go along with it. We will not knock it until we have tried it. We will wait and see.

Dhiren is indeed fortunate to have you as his soulmate, and we are lucky to have your wisdom here on Talking Point.

Dhiren has agreed but I know he doesn`t know what he has agreed to.

oh lord, I know how much pain you will feel behind that simple statement. Even after 7 years since Jan 'agreed' to go to the assessment centre, that act haunts me still

 

[Grannie G]

Do you know Bruce, I`ve offered sympathy and understanding on this forum, to people who have been in a similar situation.

I have had no idea of their pain until it became a personal experience.

The pain of this week has been greater than anything I have experienced so far with Dhiren. If we can get to the bottom of the threat with the knife, I`ll have him home tomorrow.

 

[Skye]

Dear Sylvia

Another very difficult day for you. Thank goodness you have Paul to support you.

Poor Dhiren is trying to make sense of what is happening to him -- and, of course, blaming you. Well who else is there to blame?

If his pancreas isn't functioning,that could account for his confusion, but you checked his sugar levels regularly, didn't you? And his diet was OK -- all very puzzling!

I hope they get his medication sorted out soon, it's not going to do him any good staying where he is unhappy.

Good luck with your outing tomorrow, I hope all goes smoothly.

So the pamper session will have to be postponed?

Love,

 

[Christinec]

Hi Sylvia,
I am so sorry that the crisis had to come. None of this is your fault. You have done everything that is possible and we all know that will continue to do so.
Dhiren is so lucky to have you wherever he is as you will be there for him doing what you can.

Do not know what to say but wishing you the best. Hope you sleep better tonight - you need to look after yourself as well.

 

[paris07]

Hi Sylvia,
I just wanted to add my best wishes to you and your family, you have been a great help to myself and others and I hope you will keep strong and all this crisis will pass soon and you have hubby back home.
Take care
paris07