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

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jude1950

Registered User
Mar 23, 2006
182
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Lincolnshire
Dear Sylvia,

How distressing for you. It is awful when you think you have averted a "bad Mood" only to find once the distraction (In Dhiran's case a nights sleep.) has ended you are back to square one and the mood is still there. I don't know how to help you on this one only to say I have been in the same position and it is not very nice I have a daughter who I used to talk to when Jim was really at his most upsetting and verbally vile to me, even then I could not tell her everything he said. TP and especially your support helped me through hopefully I can do the same for you and just provide a listening sympathetic ear.

take care

Judith
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,445
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Kent
Thank you Judith

I know you know what it`s about.

Dhiren has just come to `ask` if there`s any food he is allowed to eat. `Would I mind ` if he had some rice.

So I went into the kitchen with him. He smells , but I daren`t say anything to him just now. I took some lentils, rice , onions, garlic cauliflower and spices out for him. He stood. I asked if he wanted me to chop the onions and garlic.
D `Yes please.`
I asked how much oil he wanted in the pan.
D `A little bit.`
I asked if he wanted to put the spices in, he did.
And step by step, I asked and he answered and now he is watching it cook.

I don`t think he knows where he is or what he is doing.
 
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zonkjonk

Registered User
Mar 1, 2007
290
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Melbourne, Australia
dear sylvia,
out of everything that happened during mums decline that moment was the worst for me, when my mum had no inkling who I was. Goodbye Mum.
I am sure it is much magnified when it is your partner.
I am so sorry this is now happening for you and D
I feel that D has slipped down somewhat fast over the last several months....
excuse my grammer
day by day sylvia, you can do that for D
love Jo
 

Mameeskye

Registered User
Aug 9, 2007
1,669
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NZ
Sylvia

That must hurt.

But behind it, he knows you are his wife and also that may not even have been the word that was supposed to come out of his mouth.

My Mum often called me "Mum" in the last couple of years, but sometimes things she said or did indicated that she knew precisely who I was, even if the word was wrong.

A hard day...but I am glad that there is some support coming

Love

Mameeskye
 

gigi

Registered User
Nov 16, 2007
7,788
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East Midlands
Dear Sylvia,

Dhiren seems to be more confused since he came out of hospital..which is not surprising..

Surely the very fact that he went in..and the reasons why he was admitted..were a sign that things were starting to deteriorate.

No-one knows, though....

Glad the CPN is going to visit....support is maybe not too far away....

And we're always here.....

Love gigi xx
 

BeckyJan

Registered User
Nov 28, 2005
18,971
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Derbyshire
Hello Sylvia: I have just scanned your last few posts and I am so sorry that Dhiren is unsettled and confused. (unfortunately I do understand).

You must keep encouraging all the support you can get. I do hope the CPNs are good for you. (I still have not seen ANYONE from the MHTeam since last October - I think it is a legal requirement to see us every 6 mths n:eek:).

I am 'sleep deprived' so I am not posting much - but I do care about you and Dhiren.

It is hard and I do wonder how much we can take.

Love Jan
 

helen.tomlinson

Registered User
Mar 27, 2008
541
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DearSylvia

It seems you are in the thick of it at the moment and facing some change in Dhiren that is so hurtful. I wish I knew what to say or how to comfort but I don't. I can only say that I feel the hurt and the insecurity because it feels like less familiar territory. I do send love and hope for those little things that make it all bearable.

Love Helen
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,445
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Kent
I still can`t work out whether Dhiren has deteriorated significantly or is suffering the after effects of his hospital stay, and only time will tell.

He is `with me` now and told me how frightened he is. He feels he cannot think straight and is unable to do properly. He said the only ones he can trust are me and Paul and cannot believe he could do anything hurtful to either of us.

When he asked for his wife this afternoon, he immediately realized who I was once i`d told him, so I haven`t lost him yet. But his face is tortured at times and I wish I could smooth out the turmoil he is experiencing.
 

Skye

Registered User
Aug 29, 2006
17,000
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SW Scotland
Dear Sylvia

It's so painful, isn't it?

It hurts that often I just get a puzzled look from John, then one of the carers speaks to him and gets a smile.

Today his son came in. John didn't respond to me, but Mark got a great beaming smile.

The thing is, though, it's not all the time. Most of the time Dhiren knows who you are, and that he needs you. Hang on to those times, and try not to let the other times upset you too much. Not easy, I know.

I hope the rest of today has been easier.

Love,
 

janjan

Registered User
Jan 27, 2006
229
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Birmingham
Just popping in to give you a [hug].You have such a lot of patience with Dhiren, and your son Paul is a credit to you both. I hope he settles down soon now he's home. Jan.
 

Kate P

Registered User
Jul 6, 2007
565
0
Merseyside
Hi Sylvia,

No advice of any great value - just want you to know that I'm still thinking of you and Dhiren and praying for peace of mind for you both even though I can't get on here to offer much support just now.

I hope this confusing time settles and you can get into a "new routine" and level of understanding.

Love and hugs
 

Cliff

Registered User
Jun 29, 2007
777
0
North Wales
It's just awful when you long for a positive friendly response, Sylvia but get a totally unexpected reaction.

But........, that's this ****** disease.

Love to you, Dhiren and Paul,
 

lesmisralbles

Account Closed
Nov 23, 2007
5,543
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Dear Silvia & Dhiren,
I know at times I am flippant. But I have to hide the sadness, that is my way of copeing:)

Ron on Wednesday did not know who I was:(
he awoke from a deep sleep, and asked me who I was. This is not the first time this has happened.

There is a lot more going on, I will not bore you all with it. You all have the same problem's.

I get up every day, and like all of you, I just get on with it.

My love to you. And to ALL who are in the same boat, KEEP ROWING

Barb XX & Ron ZZZ
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,445
0
Kent
Sundowning.................again

I had been on the phone, and came off at about 4.30pm. to find sundowning had started.

D `Can you help me.`
S `What is it?`
D `I want you to help me find my real family.`
S `I`m your real family.`
D `You don`t understand. I have a real family there.`
S `Where?`
D `I don`t know the address. I want you to help me find them.`
S `I can`t help you. You haven`t seen them for 50 years. I don`t know where they are.`
D `It`s all right for you. You have got your family. Put yourself in my shoes.`
S `My family is your family. You, me Paul and the children.`
D `My family is in Manchester.`
S `Well you will have to find them. I can`t.`

and later

D `I have to find my family. I have nowhere to live.`
S `This is your home. This is where we live.`
D `Are you sure?`
S `Of course I`m sure. It is our house. Yours and mine, our names are on the deeds.`
D `But when did we come here? I don`t remember.`
S `We came here 5 years ago.`
D `I must have had a bad memory for a long time.`
S `I think so.`

and later

D `I will have to go to Manchester to bring my clothes. I only have this one pair of trousers and one shirt.`
S `You have all your clothes here. You have a wardrobe full of shirts and trousers and drawers full of other clothes.`
D `Where are they?`
S `In the bedroom, go and look.`
and he went to look.
D ` I need an iron. They are not pressed.`
S `Show me.`
and he had found a pile of clothes on the spare bed to remind me to do the ironing.
So I opened the wardobes and drawers and it was as if he was looking at them for the first time.
D `I can`t believe it. It`s like a miracle. How did they get here?`
S `They came with all our things in a removal van.`
D `Does Paul know we`re here?`

___
 

helen.tomlinson

Registered User
Mar 27, 2008
541
0
Hi Sylvia

I do hope you are not in for too long a session of sundowning with Dhiren. It must really be like a miracle for Dhiren if his brain is telling him he should be in Manchester where his family and all his stuff is and then he sees it right there in front of him - wow. I would imagine though that until his brain settles into the present he will keep going on. With some luck he might settle into the footie!!

Love to you

Helen
 

BeckyJan

Registered User
Nov 28, 2005
18,971
0
Derbyshire
Hello Sylvia:

I feel for you with all my heart. Your day to day problems are so different but we all go through 'hell'.

Oh where is my magic wand??? :mad::mad::mad:

Love Jan
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,445
0
Kent
Thank you Helen

I`m hoping Wimbledon will give me a break.

Dhiren has always loved Wimbledon fortnight. It will be interesting to see how much interest he has this year.

He has had no interest in the European football this year because England was not involved.

Love xx
 
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