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

[Skye]

Oh Sylvia, it's so disappointing that after a few good days the problems are all back, with a vengeance.

I can understand how distressing it is for you, and how much you want to bring Dhiren home. But you know you have to give them a chance to sort out the meds.

Yes, we know it's the illness. That makes it easier to understand, but not easier to bear.

Try to enjoy your barbecue -- and open that bottle of Madeira when you come home!

Love,

 

[Grannie G]

Thanks Deborah and Hazel.

It is very upsetting but still comparable with what I`ve been living with. That`s why he`s there.

I suppose it`s best for the ward to see him warts and all, otherwise he`ll come home all angelic and be back to sqare one within a week.

Off for a bit of Phantom of the Opera practice on the piano and a BBQ.

Love xx

 

[CraigC]

Dear Sylvia,

God how hard this must be for you. Everytime I leave dad it still breaks my heart to know he is somewhere else and not at home with us, but added to this you have the anger and guilt thrown at you. It does sound like Dhiren is being cared for and you have no choice a this moment in time. I really don't know what else you can do but breathe deeply.

thinking of you
lerv
Craig

 

[BeckyJan]

a bit more mellow if he had eaten properly,

The question of low blood sugar was raised by a friend. His wife (ALz) was always in a better mood when he gave her a biscuit or ice cream. He felt certain that low blood sugar made her more difficult. I bear this in mind alot here - giving D a biscuit or cake between meals.

I wonder if others have experienced this.

Try to enjoy your grandchildren and the BBQ Sylvia - not easy, but....

Love Jan

 

[jenniferpa]

Dear Sylvia

I understand when you say that on the ward you believe it's 50/50 - a genuine desire to come home/the disease talking but I'm not so sure. True, I realize that the ward is far from ideal so who would want to stay there, but if he wasn't focussing on something real, he'd be obsessing about something that wasn't (e.g. you taking all his money). Just because you can see that there are issues that someone who was well would be complaining about, so you are empathising like crazy, the place could be perfect and you just know there would be something he would be distraught about, if he was going to be distraught. Don't think for one minute I think he's controlling this, but as you said to many others: this is the disease talking and try not to feel guilt.

Incidentally - I note this bizarre trend re "hand over meetings" being scheduled during visiting hours at my mother's hospital. I "suppose" the rationale is that when there are visitors there they there is less need for staff (mind you what does that say about the staff?) but the effect I found was 1) the feeling that staff were hiding and 2) if you really needed help you couldn't get it (there were a couple of incidents when people fell and there was no staff to help). Sorry - I digressed there.

 

[Lynne]

Sylvia, I'm so sorry you had such a volatile & upsetting visit. I can understand how you must be feeling torn in half.

The bed was back to shoulder height again. It upset me.

Was any explanation for this forthcoming, or did you not get a chance to address it with everything else that was going on? I suppose (being charitable) it could just have been a mis-communication between shift changes of staff, but of course Dhiren is sufficiently self-aware to resent being treated like a naughty child (as he would see it) in this & other respects.

Frustrating to know that nothing I say here can bring you any comfort, & a zillion times more frustrating for you not to be able to comfort Dhiren.

Love & Hugs

 

[sue38]

Dear Sylvia,

I'm sorry the visit was so awful. I can understand why Paul was upset. Although my Mum had told me many times how my Dad could be, his anger wasn't usually directed towards me, and he could put on his best behaviour when I was there. When his anger was directed at me it was a shock. But that was pretty much a one off, you and my mum have to put up with it day in, day out.

I tried to reason with him, Paul tried to reason with him,

We never stop trying to reason in the hope that eventually they will 'see sense'. Futile we know, as in their minds they are making sense and we are the ones who have it all wrong.

I hope you can enjoy your time at Paul's.

Love xx

 

[Squibbs]

Dear Sylvia,
I have been reading all your posts but have never joined in before because I am just starting on the 'journey' with my father and didn't feel I could add anything to what everyone else says. I was interested though in the mood swings as I am also a diabetic and I find my mood is seriously affected by low blood sugars - I act and speak in a way I never would normally - I am a very placid person - and I think this could well be a factor in your husband's mood. A sweet or drink should quickly bring his blood sugars up but must also be accompanied by a 'proper' meal or sandwich for long term raise in levels. I find that a meal of mainly protein (I'm always trying to loose weight!) is not enough and carbohydrate is essential. Maybe the hospital is not ensuring your husband is getting enough bread and potatoes. Hope you dont mind my commenting - I expect you already know all this!! I am full of admiration for you. Sue

 

[Grannie G]

Thank you

Hello Sue/Squibbs.
Thank you for your comments.
My husband`s blood is being tested 4 times daily whilst he is in hospital, to find out for sure whether or not his mood swings are diabetes related.
He is not happy with the food at the hospital but who is happy with hospital food.
I always take him a banana, some grapes and a healthy bar [not to eat all at once] but today he refused everything saying he was going to refuse food and drink until he died.
He is not happy full stop.


Hello Sue38,
I think it`s the end of the line as far as reasoning goes.
Paul has seen Dhiren`s anger against me but has never been on the receiving end. Today He was and it was har for him.


Hello Lynne.
I phoned the ward half an hour after we arrivd home, after I`d calmed down a bit.
Of course it`s the weekend, and a new shift of staff. The nurse I spoke to didn`t know about Dhiren`s fear of the high bed but did say she`d make sure eveyone knew from now.

And Jennifer.
I know we are seeing things from our perspective, and I know Dhiren has all the things he is now missing when he`s home and he still has complaints. But home is home. He is in a cell like bare room, he has no home comforts and no freedom. So it`s not surprising he flips.

 

[sue38]

Sylvia,

I dont want to be intrusive, but is Dhiren there as a voluntary patient, or has he been sectioned? How long do the medics think he should be there? Is it until they see the effects of the new medication?

How would you feel about Dhiren coming home if he could? It does seem that being in the assessment unit is very troubling for Dhiren, given that he is such a private person and his world for some time has been you and Paul and Paul's family.

I'm not suggesting for a minute that you should have Dhiren home if you feel you are not ready, just wondered what the choices are for you.

It's just with my Dad the medics didn't seem to be 'on the ball' and we made the decision to bring him home, but of course they were not specifically dementia trained.

Sorry for all the questions!

Love xx

 

[Sandy]

Hi Sylvia,

Sorry that today's visit was so much more difficult. Try and hold onto Dhiren's attitude of the day before - where he was willing to stay if there was a chance of making things better.

It is very upsetting but still comparable with what I`ve been living with. That`s why he`s there.

I suppose it`s best for the ward to see him warts and all, otherwise he`ll come home all angelic and be back to sqare one within a week.

That is such an important point. In order to judge how the medications are affecting his behaviour, the doctors have to see the behaviour.

I think I remember you saying that Dhiren has a bad reaction to Aricept, is that right? Did his doctors ever try him on the other forms of AD medication?

Also, I'm sorry that Paul is going through this and while he probably knew some of this on an intellectual level, it is quite a different thing to expereience it on an emotional level.

One day at a time.

Take care,

Sandy

 

[jude1950]

Hi Sylvia.
When Jim was first in the NH after two violent outbursts at me
he too would go at me when I went to visit telling me that If I could not cope with him at home I should be the one in the nursing home and he would be alright looking after himself at home We all know that is not true but he could be so convincing
sometimes he made me wonder if I had done the right thing. Then after a couple of weeks the staff realised what he was really like after a couple of incidents when he had threatened them. no matter how much we try to rationalise their actions until Dhiran has had a full assessment please try to stick to your guns about him being there. I* know it is not easy on more than one occasion I have got the car out of the garage and been tempted to fetch Jim home thankfully I never got beyond the drive. I hope there is a better outcome for you and Dhiran and you are able to have him home again in our case it was not to be.
We have good days and bad days too I visit when I can and Jim no longer berates me for not having him home.The first NH turned out to be the wrong choice for Jim I looked very carefully before choosing the Home he is in now and he is much more settled than he was however he is still unpredictable and needs lots of one to one care which he is getting his behaviour is still challenging but I am no longer at risk and now I am not exhausted by caring 24/7 I am able to calm him down the Home will call me in if they feel it necessary and involve me in all aspects of his care. Sorry this is such a long post what I am trying to say is keep your options open and do not put yourself or your health at risk.
love Judith

 

[Grannie G]

Dhiren is a voluntary patient Sue.
He has been in the assessment ward one week and on the new medication four days.

Yesterday I could have willingly taken him home with me. Today I didn`t want him home. I saw the same expression in his eyes as I saw last Thursday.

I cannot take the risk.

But it doesn`t stop me feeling so sorry for him. I have just watched neil Diamond and have been in floods of tears over a passage from one of his songs.

Whether this is copyright or not, I`m sure I can post this piece without fear of litigation, for it is just how I think my poor husband must feel.

I am, I said
To no one there
And no one heard at all
Not even the chair
I am, I cried
I am, said I
And I am lost, and I can't even say why
Leavin' me lonely still

 

[sue38]

Dear Sylvia,

You will know when the time is right to bring Dhiren home. Clearly now is not the time, but I hope the right time comes soon.

Love xx

 

[Skye]

Desperately sad, Sylvia.

Today I didn`t want him home. I saw the same expression in his eyes as I saw last Thursday.

And this is the saddest post you've ever made.

Have you discussed the future with anyone? Perhaps am EMI unit would be more appropriate for Dhiren's needs -- and it needn't be permanent.

Love,

 

[Grannie G]

It isn`t I permanently don`t want him home. I don`t want him home in the state he was in today.

 

[Skye]

I know that, Sylvia. But as he's a voluntary patient, a transfer to a care home temporarily might be easier for him -- and for you.

Just a suggestion.

Love,

 

[Grannie G]

Thanks for trying Hazel, but he needs the assessment and a try to get his diabetic and psychotic medication right to stabilize him.
He wouldn`t get that in an EMI unit.

 

[gigi]

[I am, I said
To no one there
And no one heard at all
Not even the chair
I am, I cried
I am, said I
And I am lost, and I can't even say why
Leavin' me lonely still
/QUOTE]

Dear Sylvia,

What a heart rending post...those words could have been written for any one of our loved ones suffering from AD...

I've not posted much because I have no experience of what you're going through at the moment..

Dhiren is safe..that's what counts..and you are too..

Visiting must be so anxious as you don't know how things will be..

I have no advice...but am here to send love and support..as you have done so often for me..

While you have the opportunity ..try to think about you ..

You do so much for us all here..this post is a small and totally inadequate token of my appreciation...

Love gigi xx

 

[Grannie G]

Thanks Gigi. I`ll be better when I`ve seen him tomorrow.