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

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lesmisralbles

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Nov 23, 2007
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Who am I to comment

We are all in the same boat, some are sinking faster than other's:(
You said that if Dhiren was at home he would be the same.
I know that to be true with Ron.
I can only send love, and some understanding:(
Cause, till you have walked a mile in our shoes:(
Much love
Barb & Ron XX
 

BeckyJan

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Nov 28, 2005
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But he has no radio, no television, no CDs or DVDs and nothing to read, so he would be better off in a prison cell.
__________________

Its just dawned on me - David never wants these things anyway except the odd book - the favourites he reads over and over again.

What more would Dhiren want if he were at home? Just home comforts I guess!!

I ache for you, along with the others. Love Jan
 

TinaT

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Sep 27, 2006
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As you say Sylvia ....its dementia. Nothing can change the relentlessness of this disease which has taken away so much of our husband's former self and left us with only hearbreaking glimpses of who they once were. It is the fleeting moments of togetherness when he shows me how much we have both lost which break my heart and cause me such distress.

However I have to say from my own experiences of the ward which Ken was on, much more could have been done regarding stimulation. Ken and a few others who would have benefitted from some occupational therapy were left day after day with no stimulation whatsoever except the constantly noisy, volatile and often violent incidents which happened and the fear such things left in Ken's mind.

I asked could a weekly menue be pinned up so that at least visitors could have something to use to chat about on visiting - nothing was done! I asked if they had any dominoes - they were lost in the move from the old ward to the new one. I even went to 'Toys r Us' to look for games such as dominoes, connect four, playing cards etc. but unless we could have used the dining room to play them in, I would have been wasting my time. The dining room was almost invariably locked each day during visiting hours.

The newly renovated ward which had thousands of pounds spent on it was so badly planned that only two rooms had any natural daylight. Of these two rooms, one sometimes couldn't be used as a very sick and violent patient was in this room wandering around smashing up furniture with a nurse traling the man around. The other room with any daylight was the dining room which as I say was almost always locked.

The two rooms with TV's in were far too small. If three men out of the 20 were sat in one of the TV rooms, then there was no room for any other patient, let alone a patient and a visitor. The TV in one of these rooms got smashed and was not replaced. Eventually a patient's relatives supplied an old one to replace the broken one. The staff always put a patient in the other TV room who screamed and shouted if anyone went in, so he always had the room to himself.

Regarding trivial things such as personal clothes being worn by other patients. I do not consider it trivial when I couldn't take Ken out because another patient had previously been taken out by a relative wearing Ken's shoes! Another time I couldn't take him out because the same thing had happened but this time it was Ken's coat which was missing. Neither would I consider 5 pairs of glasses lost or smashed in less than two months as trivial.

I do not want to hijack your thread Sylvia. However after reading about so called 'trivial' incidents - well I don't consider the many things which happened to Ken and myself as trivial.

xxTinaT
 

hendy

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Feb 20, 2008
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Dear Sylvia
Just following on form Tinas post. Its just a horrible thing to think that somebody else has been wearing his clothes. This happened to dad a fair few times. It does seem at first to be 'trivial' but when our loved ones are falling apart before your eyes, why should these things be allowed to happen that makes their situation worse? I suppose if its a one off, its not a big deal. But when it happens aver and over again... Its a very common experience to have their shoes or glasses go missing and this is quite serious neglect I think. Thankfully, it does sound like Dhiren's ward are a bit more forward thinking i.e. daffodil day etc.
Would Dhiren appreciate other forms of stimulus like CD's etc? Do you think he would respond to them in a hospital situation?
take care
hendy
 

j.j

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Jan 8, 2007
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grannie g, i am dismayed to read of Dhiren bieng admitted to hospital and the distress this causes, I have been down this road and it is truly hearbreaking and i send you my thoughts and prayers that you have good days to see you through, because that is all we do,take each day as it comes and deal with it. As Tina said i found the total lack of stimulation very upsetting, some of the care staff were angels but were stretched to the limits at times. And just to agree with barb it is comforting to find a place to speak to people whom have 'walked a mile in our shoes' x
 

fearful fiona

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Apr 19, 2007
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Dear Sylvia

My heart goes out to you. This echos so much what has been happening when I go to see my Mum. The clothing thing hasn't been too bad, in fact she was wearing someone else's cardie today but it went so beautifully with the colours of the dress she was wearing I didn't say anything.

Sorry that's a bit trivial. Stimulation seems to be such a difficult thing. Mum's hospital has a lot of activities and I show her things when I go in but it just doesn't register, she is in a world of her own. She has been affected by the other people on the ward, sometimes I just wish they would go away and leave her on her own. Anyway, she is moving on tomorrow to an EMI home, so goodness knows what will happen there.

Hope you get Dhiren back where he belongs, with you.
 

Canadian Joanne

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Apr 8, 2005
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What is trivial?

However after reading about so called 'trivial' incidents - well I don't consider the many things which happened to Ken and myself as trivial.

Tina, I did not mean to offend you or imply that what happened to you and Ken was trivial. I was responding to Sylvia's post where she said

It really does show how careful we should be about who we listen to, what we hear and what we say to others. The person who frightened the life out of me complained about the ward mixing up her father`s clothes and dressing him in clothes she found upsetting to see him wearing

and

What is so important is the scaremonger didn`t say a word about the excellent care on the ward.

This sounds very different to the situation you and Ken were in. The place Ken was in sounds like it has no business having people with dementia on it.

The point I was trying to make (and very badly, I'm afraid) is that if overall the care is excellent, we shouldn't worry about the smaller things. What you and Ken went through is entirely different and isn't a trivial matter. When things are constantly going missing or getting broken, that's not trivial. I was referring to occasional things going missing.
 

gigi

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Nov 16, 2007
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Hello Sylvia,

Sorry you had such a distressing day with Dhiren yesterday.

It must be so difficult for you to leave him..

Try to remember the original reason for his admission...Dhiren is not there for ever. He will come home..and you haven't deserted him!

Thinking about you..sending you lots of love. Hope today will be better for you....:)

Love gigi xx
 

Grannie G

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Thanks Gigi.

I`m beginning to feel the task of modifying the diabetic and antipsychotic medication, to create some semblance of a balance, is either an impossibility or will take a very long time.
 

Grannie G

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Update

Just had a phone call from S***, Dhiren`s named nurse, querying why I have refused help from Social Services.

He is filling in a form to prepare for Dhiren`s discharge. He is trying to organize a Care Package .

I explained the situation. How it was, and how it now is.

S*** understands the culture of family care as his wife is Asian.

He also said I should ask for help on visits when Dhiren is particularly confused. There is always assistance on the ward.

It does sound better than it was. And I feel better too.

And Paul is trying to arrange the afternoon off work tomorrow so he can join me in the Ward Round Discussion.

Updated to add ...Paul has been given time off.:)
 
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TinaT

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Sep 27, 2006
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I do appreciate that you were responding to Sylvia's post and I shouldn't have taken it personally to myself and Ken, Joanne. Thank you so much for your post. I have sent this message as a PM to you as I know that you did not in any way, want to denegrate anyone else's experiences.

When your loved one is in the care of others, the day to day care such as combing hair wrongly or wearing of other people's clothes is hard to bear. The rational part of me says that this is a little blimp - but little blimps hurt!

For example, Ken has worn a little 'tash and goatee beard for as long as I've known him, which is some 45 years. Yesterday I went to collect him and he was completely clean shaven. I laughed it off but it felt like I had lost another little part of him!

Sylvia, I think you are coping so well with what each day throws at you. It is a very good idea to get a nurse involved when Dhiron becomes too demanding of you. He has to be told that he is in the right place for his illness and cannot keep blaming you for something which is out of your control.

xxTinaT
 

BeckyJan

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It does sound better than it was. And I feel better too.

I am pleased to hear this note of optimism, Sylvia.

I do think the nurses try to put everything possible to help you into a care package. They did this with me, but when back home it is important to ensure this support is carried through.

Have you had any indications of when Dhiren will be home?

Hope your visit today is a good one.

Love Jan
 

Kate P

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Jul 6, 2007
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Dear Sylvia,

I think the up and downess of it all can be one of the worst things - you allow yourself to hope only for it to be dashed - but life without hope would be a terrible thing.

In respect of the clothes, when Milly was in hospital we said she would wear her own clothes and we would be responsible for providing fresh ones and for cleaning them. They put a bag at the end of her bed with a big notice so any time she was changed when we weren't there they knew to put them in the bag for us. We didn't lose any items at all. As Dhiren can lock his room would this be possible - a little laundry basket perhaps?

I'm glad you have a nurse who can understand the issues you are grappling with and is giving you great support.

As always I'm sending you prayers and my huggiest of hugs.

{{{HUGS}}}
 

Mameeskye

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Aug 9, 2007
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HI Sylvia

The little issues that crop up can feel so problematic but it sounds like Dhiren ash a good named nurse routing for him.

I hope that you can get a good care package set up.

Love

mameeskye
 

Grannie G

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Apr 3, 2006
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Thank you.

We had a lovely two hours, from 1--3pm.

We discussed the ward round meeting tomorrow. Dhiren was delighted Paul was coming, he knew we were both able to speak up for him, we know what he wants. He was happy to stay in hospital as long as he knew we were working towards him coming home.

The at 3 o`clock it all changed.

He was coming home with me. He wouldn`t stay one minute longer in this place. The food was terrible. The people were mad. Paul is all talk. I am all talk. We are trying to fob him off. It is because he isn`t English. He would walk behind me.

Because of yesterday`s experience I was not as shocked, so not as upset. Although I would have liked to have stayed longer, i decided it was best to go. I was able to leave quietly and calmly, helped by the staff. He knocked on the glass door and I waved and blew him a kiss.

But the undertones of racist paranoia were really disturbing. This is something else entirely new.


Dear Kate.
There is a note on the wardrobe door which says `Mrs. G will take Dhiren`s washing home.` There is a laundry bag in the wardrobe.
Dhiren keeps pulling the note off.

Dear Tina.
Dhiren doesn`t accept he is ill. He has no fever, no temperature, no-one takes his pulse or puts a stethoscope to his heart. He is given no madicine. How can he be ill?
The Alzheimers is nothing important. I make it important. The doctors can visit him at home and if they don`t he will pay for a private doctor
I know how you feel about Ken`s tash and beard.
My mother had good, strong, thick, naturally wavy hair. I arrived at her first home one day to find she had been given a perm.
No-one in our family has ever needed or had a perm.

Dear Jan.
I hope we will have some idea when Dhiren is coming home by tomorrow.

Dear Mameeskye
I am going to ask what is considered a good care package. Then I will know whether or not it meets expectations.
 

Christinec

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Aug 8, 2007
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Sylvia,
I have been following your sad posts and as always I am impressed by how well you are handling everything.

This horrible illness plays so many tricks and we all long for the person we knew to return. Although the Mum I visit now actually likes me more than the Mum I used to know I would still rather have the real Mum.

Also I think that the 24/7 carer lives so close that seeing the person they care for in a strange setting is a really hard as the perspective can be an eye opener. Other relatives like me see everything so differently - either protected by the main carer or more aware of the decline because you see the ill person less.

I know you long to have your dear husband home but please do try to take all the care you are offered and if it is not enough you need to say so firmly. If services are stretched carers can be left feeling so guilty at taking what they see as more than their fair share of help. You need to look after yourself as well. Your son sounds a good support but you are the 24/7 carer and know best what will work for you.

As always hoping not to offend and all said in friendship.

Re complaints about clothes the home Mum is in had a open meeting for family and carers which I thought was a great idea. However it turned in to an opportunity to critise the clothing problem by one set of relatives. I kept thinking about how well Mum looked , how clean her room is and how pleasant the whole enviroment of the home was. Mum is in her own clothes 95% of the time. She would not know her own clothes anyway. I wish I had said all this at the meeting and not let the mportant issues be forgotten.

Hope the meeting goes well.
 

TinaT

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Sep 27, 2006
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Costa Blanca Spain
Sylvia,

Christine has said very wise words with which I agree 100%. You are the one who has to cope at home and I know myself how very wearing it can be. Ken hated people coming into our house to care for him and was very nasty to them at times. I rather think that Dhiran might be the same and even with a good care package you may still have a bit of a bumpy time until he settles back home and learns to live with whatever care package is put into place.

The manager of Ken's care home has been on holiday and came back today. I doubt there will be any other little incidents such as beard shaving. Ken's hernia was troubling him and he could hardly walk today. I am waiting for an urgent appointment with a surgeon and think it will have to be repaired. I mentioned this to the manager as this had happened in his absence and also that Ken was having great difficulty and pain when walking. The manager immediately phoned the GP to try to push things along. Despite the little 'blips' I could not ask for better care for Ken than he is getting in his lovely CH. By the sound of your posts, you are also getting good support from the ward staff. This does make a world of difference.




xxTina
 
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hendy

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Feb 20, 2008
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Dear Sylvia
I do hope that ward round goes well for Dhiren, yourself and Paul. Will be thinking of you all tomorrow and hoping for the best outcomes possible.
take care
hendy
 

gigi

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Hellol Sylvia,

Wishing you a positive ward round meeting...fingers (and everything else) crossed...

Will be thinking about you...:)
Love gigi xx
 
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