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

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Grannie G

Volunteer Moderator
Apr 3, 2006
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Kent
Another bad night.

Up and down from bedroom to living room between 1am and 4 am. alternating between bedroom and living room chairs and bed, fidgeting, restless, legs moving constantly, dressing gown on and dressing gown off, slippers on, slippers off, he using urine bottle, me cleaning urine bottle, he holding grab rails, unsteady, needing assistance at all times, ending up asleep on living room chair.
I went back to bed.
I woke at 7 fearing he would be lying on the floor, having fallen. Found him sound asleep in chair, head at a dreadful angle looking most uncomfortable.
I woke him and brought him back to bed where he is comfortable and once again sound asleep.
 

Bookworm

Registered User
Jan 30, 2009
2,580
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Co. Derry
It sounds Sylvia as if, apart from being on the go in the darkest hours, that you found deep sleep for just a small moment and your concern for Dhiren jolted you out of even that to rescue him to safety. I know I could not do what you are doing - I know there are people who can - e.g. with a child that has a tracheostomy tube - but there must be some other way. I hope maybe you are resting as I write. Fond thoughts winging their way through the airwaves to you this morn - I just wish I lived round the corner and I'd say sleep somewhere else tonight & I'll do this - but of course it is just not that easy for Dhiren to just have another person(s). I suppose that is what the crunch point is for you about "when". Speaking from the heart, I trust I have not offended.
 

Winnie Kjaer

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Aug 14, 2009
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Devon
Just to say how much I am thinking of you and your difficult situation. Hope you get some real rest soon. I am so sorry I can't find something better to say.
 

susiesue

Registered User
Mar 15, 2007
2,607
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Herts
Hi Sylvia
I have respite at the end of the month and to be honest I cannot wait, it breaks my heart to take John but I must have the break or go under.
His constant questions are no better and now most of the time he dos not know me thinks I am his sister or mum.

That is exactly how I feel and we do have to think of ourselves as we are no good to anyone if we go under.

Sylvia - hope things improve for you and Dhiren today.

Love
 

Lynne

Registered User
Jun 3, 2005
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Suffolk,England
Dear Sylvia

Words fail me too, but I'm here & thinking of you constantly.

It occurs to me that, dreadful as the last 48 hours have been for you, it seems that non-recognition of you is the one thing hasn't happened (I hope!)

Love x
 

Grannie G

Volunteer Moderator
Apr 3, 2006
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Kent
It occurs to me that, dreadful as the last 48 hours have been for you, it seems that non-recognition of you is the one thing hasn't happened (I hope!)

You are right Lynne.
When that happens it tends to get nasty and that`s what I dread.

Dhiren can go into the CH anytime. His room is ready for him and all the discplines are aware of our situation.
It would make life easier for me in the long run [I think] if he were to go now, but I don`t have the emotional energy to cope with it.
 

Lynne

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Jun 3, 2005
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Suffolk,England
So the one aspect of his 'normal' sundowning behaviour - & the nastiness which sometimes goes with it - which might force you to make this decision (which you both dread)
is not evident.

Not that it helps anything, but as you said yourself a couple of days ago "Who says people with dementia have no control over their behaviour?".

Love x
 

zonkjonk

Registered User
Mar 1, 2007
290
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Melbourne, Australia
dear sylvia,
I have read your latest posts and I just want to say I have never been a full time carer like you but for your sake and Dhirans....take the respite as soon as you have the strength to make it happen...all the awful things you imagine might happen...probably wont. I had my mum in respite for 2 weeks 6 months before she went into full time care.
after I picked her up and took her home it was never mentioned, like it never happened. But, it was VERY hard to do to her...at some point you have to trust someone else to look after him.
I am so sorry about Dhirans deterioraton, its so distressing for you all,
Love from Jo
 

Nan2seven

Registered User
Apr 11, 2009
2,525
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Dorset
"... I don't have the emotional energy to cope with it." Beautifully put, Sylvia. I think that is what I was trying to say last evening. You have to feel READY for the separation when it comes because it feels so alien at first.

I am glad Dhiren has had/is having a good sleep this morning - although don't you just wish he had had it through the night! Wishing you a better day to-day.

Love, Nan XXX
 

larivy

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Apr 19, 2009
5,225
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essex
Sylvia just sending my love hope you have a better day it seems we find it hard to live with them but harder to live without them love larivy
 

Mameeskye

Registered User
Aug 9, 2007
1,669
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60
NZ
Hi Sylvia

I am just catching up with your posts. What a time you are having!

Hopefully you are managing to get enough peace to sort your thoughts out. The correct thing to do is what you want to do...the trouble is it can sometimes be difficult working out what this is.

Love and (((hugs)))

Mameeskye
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,444
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Kent
Sundowning again with a vengeance, Dhiren has been going to the door again to go home, he has no idea who I am. He thinks I`m a stranger.

I have had to threaten him with the police if he goes out and have asked for respite to be brought forwards. All being well it will start tomorrow.

One minute I`m a stranger, the next minute he thinks I`m looking for a man and is introducing himself, then he is grateful to me for finding a hospital for him, then he is asking me to tell his wife where he is as she`ll be worried.
He has begged me to phone home, he has begged me to let him go, he has questioned how I know him when he doesn`t know me.

He is hallucinating, someone`s tapping, a man was asking who`s wife I am, Dhiren said I can see his real wife tomorrow.

I have been cross, I have been in tears , I`ve packed for him. When I had finished packing he said `Let`s go` thinking I was packing for both of us.

He doesn`t know how we will recognize this `fellow` . Which fellow? the fellow who said he was married to me.

The agency carer is here. He allowed her to undress him as usual. I was talking to her in the kitchen and he beckoned me to return to the living room. Perhaps he is beginning to know me again.

So it looks like it will be a long night but if I have to sit up all night I will.
 

Lynne

Registered User
Jun 3, 2005
3,433
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Suffolk,England
Sylvia, I don't know where you are getting the strength from, it must be like ... Dear God, I can't think what it must be like.
It's unalloyed torture, for you both in your different ways. Thank goodness you've been able to bring your date for respite forward.

Is Terry or someone to accompany you or help you tomorrow?

Thinking of you, feeling helpless & useless ...

Love x
 

Beezed

Registered User
Apr 28, 2009
446
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Southampton
Dear Sylvia,

I hope Dhiren settles down and that you manage to get some sleep. I will be thinking of you tomorrow and wishing you well.

Love
Jeanne
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,444
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Kent
Terry is unavailable tomorrow and my Care Manager is out of town on a course. The Admiral Nurse will be available on Wednesday afternoon.
With hindsight I should have taken him in yesterday, but even then no one was available.
The manager of the home said she will try to get someone to support me tomorrow and I can also see if the Agency can help out. I have a sitter tomorrow morning from 10-12 so she might be able to come with me.
It`s all up in the air but we`ll sort something out.
 

connie

Registered User
Mar 7, 2004
9,519
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Frinton-on-Sea
I shall borrow Lynne's words " helpless and useless".

What can anyone say Sylvia dear, other than I hope the nightmare ends soon for you both. Love n'hugs.
 

twinone

Registered User
May 19, 2008
269
0
england
Hi Sylvia

So sorry that it has come to the point in Dhirens illness that you need respite.

It will be heartbreaking for you to leave him there but you do need some rest yourself.

Hope Dhiren settles in okay.

Will be thinking of you both tomorrow.

I hate this bl--dy disease.


Love
Janet
 

TinaT

Registered User
Sep 27, 2006
7,097
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Costa Blanca Spain
A decision Sylvia which I know you haven't come to easily. I hope all goes well tomorrow. It might be as well if you go out into town tomorrow after you have settled Dhiran. The only reason I say this is because I hate the thought of you being alone in the house and worrying yourself too much.

xxTinaT
 

Skye

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

You've made the decision, and that's the hard part -- at least, the first hard part!:(

I hope you find someone to support you tomorrow, it will be good if the carer can come with you. Then that will be the second hard part over.

I do hope Dhiren settles with no major problems. Tomorrow is going to be so hard for you, like everyone else, I just wish I could offer some real support.

Love,
 

Helen33

Registered User
Jul 20, 2008
14,697
0
Dear Sylvia,

I keep seeing the words "I don't have the emotional capacity to deal with it" and that is how I was. It is the tiredness that knocks this out, bit by bit!! Even though Alan was in hospital he has had to have round the clock extra care because he was unmanageable and I have had to live with that alone at home for a fortnight and it is only the stroke that broke the pattern!! As soon as I knew he had the medication he needed to calm down the severe agitation and confusion (which it did) and that he had the proper care, I walked out of the hospital and let it all go. Tonight is the first night that he will be left to the staff to deal with because he is now stable enough. It has not broken my heart to leave him. I am pleased that he is safe, well and in a proper place.

There is no way that I would ever allow myself to be put in a situation without proper support in place again. My support was excellent and even then it wasn't good enough when I really needed it!!!

This is about you, my dear, dear friend and I hope that you can place Dhiren in the best place, with good enough support and then sigh a sigh of relief and walk away and recover.

Love xx
 
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