After respite..the reality hits...

Beezed

Registered User
Apr 28, 2009
446
0
Southampton
Dear Gigi,

Just sending love. Whatever you decide will be the right thing for both of you, and totally your own business. We all experience this disease in a different way.

Stay strong,
Love,
Jeanne
 

nellbelles

Volunteer Host
Nov 6, 2008
9,842
0
leicester
Gigi

That's a hard one and only you can decide.

Maybe time for the famous lists, for and against.

Take your time, I suspect we will all really know when the time is right.

I will be glad when the weather warms and I can take a coffee down the garden, I think better to the sound of the birds.
 

Trying my best

Registered User
Dec 9, 2008
237
0
Yorkshire
Dear Gigi,

I really feel for you! My mum's first stay in respite (which was an emergency placement) was a complete disaster - or rather her return home was. She did seem fine when I visited her there, but when she got home she was absolutely unrecognisable from the person she had been before she went. She didn't leave her bedroom for a month and was very agressive nd unhappy with everyone.

The one little piece of hope that I can give you is that after that first disastrous respite visit, mum went back into respite several times (because I couldn't cope without the breaks) and was absolutely fine - she never had those problems readjusting to being back home again, and even seemed to enjoy it! Was it Eric's first time? Even if it wasn't then the added complication of the infection will have had a big impact.

I completely agree with everyone else's thoughts here that any long term decision you make are for YOU to make, and no one else. You should feel no guilt, although I am sure that, like me, you probably will. Try to take some time to think through the decisions that need making, even if they are hard ones. XXX
 

TinaT

Registered User
Sep 27, 2006
7,097
0
Costa Blanca Spain
God bless your honesty Gigi in saying you think you don't want to continue as you are. Please, please don't be so hard on yourself as to think it is your decision.

It isn't - it truely isn't! The disease has forced you into this position. I know that I can't cope with Ken's illness at home. It never is just the physical side of things which forces us to rethink our situation, it is far more complex than that.

We both care deeply for our husbands no matter how their disease progresses. The burden of care is there whether he is living with you or not! You will always, always be there for him, no matter where he is living. You will always put his welfare first and foremost.

No situation is ideal, whether caring at home or caring whilst a loved one is in residential care. Deecisions are made because of complex circumstances. What is the right thing for one family, will be an anathema for another family. You do what's right for you and your husband.

You will be the one living through this decision, no one else!

xxTinaT
 

gigi

Registered User
Nov 16, 2007
7,788
0
70
East Midlands
It's not a good place to be...but it's where I am.

In many ways it's a huge relief to admit to myself and the world that I no longer want to do this.

Most of the afternoon I've spent in tears. Nothing seems to make Eric happy.

He is fixated on cigarettes and TV. This is how he was in respite.

We no longer have a common bond as husband and wife. It's 16 years ago since we first started to get to know each other. The things we shared together have long gone.

I'll do the pro's and con's..and will talk this through at the assessment on Monday next week.

It's a huge relief to be able to talk this over with you all. Can I ask, please..if anyone disagrees with me don't be afraid to post. I'd welcome other comments too.

Thanks.

Love xx
 

wispa

Registered User
Nov 5, 2009
140
0
Hi gigi

As you say it's not a good place to be in and my heart goes out to you.

You can only know yourself when you reach the 'I can't do this anymore' stage and although we all feel this quite frequently at times, there comes a time when you know it's for real and it sounds like you have reached this point.

In my short time on this site, so many people have posted about the turmoil of putting loved ones into care, but once it happens and they are settled, most people speak of the relief this brings and how they can now spend quality time together.

If Eric could have forseen the future would he have told you he wanted you to contine to endure what you are going through - or if the tables were turned, and it was you that was ill...would you want Eric to go through what you are going through now. The answer I would guess would be no.

As someone else said ...you matter as well. It's not just Eric's happiness, it's yours too. And from what you said Eric seemed to be quite happy in respite, which is more than can be said for you at the moment.

Not that I am at all qualified to speak as in my case it is my Mum with dementia...but I hope you don't mind me adding my thoughts.

XXX
 

Tender Face

Account Closed
Mar 14, 2006
5,379
0
NW England
Gigi, you are one courageous lady and I suspect you have helped a lot of people just by airing publicly how you feel.

If it helps at all, in light of all hubby and I have witnessed and learnt, first with dad and most recently mum we have discussed at length our wishes for each other should the ‘unthinkable’ happen. I guess some people would see it as ‘in sickness and in health ... UNLESS....’. We are so of the view dementia takes its prisoners indiscriminately and why should it take two when it might only take one of us? How strong we might each be in that resolve God forbid the time ever comes, who knows?

Doesn’t mean we will stop loving each other and doing our best in different ways .... but 'our view' is one life wrecked is enough. Some people may think that is a terrible stance to take ..... but as others have said, it’s no-one else’s business except between us (and close family who need to know) and our mutual beliefs about the meaning of ‘care’ for each other ...... and what we would each want for the other should we no longer have capacity to make it known .....

My heart absolutely goes out to you ......

Karen, x
 

ROSEANN

Registered User
Oct 1, 2006
909
0
75
staffordshire
Dear Gigi
I for one would not disagee with you as I know exacly how you feel.
My hubby is in respite this week but before he went in the CPN came to see me because I was struggling with looking after him.
My daughter was there and she asked the nurse at which point would her dad be considered for full time care and she said as soon as your mum picks up the phone.

This shocked me because I think I did not realise how ill hubby had become, even the respite home did not think they could handle his needs.
I now have the job of looking at homes just in case the new medication they are going to try do not work.
I am feeling very down but do know I cannot go on much longer.
I will be thinking of you Gigi.
Love Roseann xx
 
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ChristineR62

Registered User
Oct 12, 2009
1,111
0
NW England
Dear lovely gigi

Whatever decision you make, it will be the right one. You need to think of your own needs as well as Eric's.

So many times, I broke down in the kitchen, crying to myself that I couldn't carry on the way things were, and each time I carried on - until the last time, when I realised that, not only could I not carry on like that, but deep down, I didn't want to.

It's an awful realisation, but there is only so much each of us can take while dealing with this terrible diease. Some will take more than others, but everyone has their breaking point - and no matter where that happens during the course of the dementia, when the carer reaches that point, they have done all they can, done all their inner reserves are capable of doing. And that is a truly remarkable thing to do.

Gigi, think of all the things you have coped with, all the situations you've dealt with - you should be proud of everything that you have achieved, because it's no mean feat.

And now it's time for someone else to take on the task of caring for Eric, to give you a chance to address your needs, because you and your needs are every bit as important as Eric and his needs.

Be proud of what you've done, gigi, and remember: whatever decision you make, it's the right one. Listen to your instincts.

Love
Christine
xxx
 

BeverleyY

Registered User
Jan 29, 2008
716
0
Ashford, Kent
Hello - long time no speak. You know I pop in/out of here as I struggle sometimes with reading of what lays ahead with my Dad.

My heart really goes out to you. This must be such a tough time for you and I think you are wonderfully open and brave to post how you are feeling.

There are times I look at my Dad and think, I don't want to do this anymore and 'why me?'. :(

I am sure whatever decisions you make will be the right ones for you, and you will have all the support you need from everyone here.

Love Beverley x
 

Izzy

Volunteer Moderator
Aug 31, 2003
73,996
0
72
Dundee
Thinking of you so much Gigi. Trying to project myself into the future. I know I would find it very very hard if Bill thought I was his first wife. Have experienced a little bit of how you must feel with my mum. I can totally understand how you feel and know the decision you take will be right for both of you. Take care. Izzy x
 

magenta

Registered User
Feb 16, 2009
95
0
wales
who am I?

It is so very sad when the cared for no longer know us. I am a third wife and in my husbands mind I seem to drift between all three and most often his mother.

I keep on with it as I know he is cared for here and as a "challenging" person he may not be cared for elsewhere.

The person we care for did not choose to be as they are and they are not the one we knew or married. That person we need to remember and try to be detached from the person they have become in order that we can continue to care for the person they are today.

Your life is your own, what ever you decide take your time over it. Sadly there is no need to rush a decision.
Magenta
 

gigi

Registered User
Nov 16, 2007
7,788
0
70
East Midlands
I don't have time to answer you all personally tonight..and have just skimmed through your posts. Eric's carer will be in soon and then it's bed time routine.

But I've never been so grateful for such support. Thankyou is not enough..but will have to do for now.

Love xx
 

sad nell

Registered User
Mar 21, 2008
3,190
0
bradford west yorkshire
Gigi , hope Eric is easier to cope with this evening, it must be so hard to take being confused with his previous wife, not too sure how i would deal with that, we know its the AD speaking but that does not protect one from being hurt so deeply, whatever you decide you know we are with you all the way , love to you both pam
 

danny

Registered User
Sep 9, 2009
3,342
0
cornwall/real name is Angela
Gigi,know that I should not really sometimes post on threads as I do not care for a loved one of my own,I just want to say that I think you are very brave to post these feelings and I wish you well in whatever route you decide to take.
 

Winnie Kjaer

Account Closed
Aug 14, 2009
2,011
0
Devon
Hello Gigi,
I am so very sorry that you have reached this stage. I can't think of a worse place to be. I have never experienced any of what many of you experienced. My care work is mostly physical my husband apart from his memory with certain things both short and long term and his communication difficulties is in the main very easy to care for.

Mentally I think he thinks I'm his first wife. He keeps asking why I'm not "putting liquid on my lips" and "doing my face" because he prefers to see me like that. It's very hard to take. It's very hard to know how to respond.

This is so personal and very hard not to take to heart. I can't thing of a worse things to happen, I am dreading the day my husband no longer recognises me.

I will be honest with you as you have given me permission, I could as far as I know and feel now never consider not caring for my husband to the end, but as I say my situation at the moment is so alient to many of yours that I am not in a position to comment, just know how I feel at present. I admire you for your honesty and can sense you are in pain for feeling as you do. My heart goes out to you and I know you will make a decision which feels right for you. Nothing is ever set in stone, and you are entitled to change your mind should you wish to have Eric home nearer the end. Please take your time, discuss it with your support team, but in the end only you alone can make that decision. I do feel for you both. Please take care.
 

larivy

Registered User
Apr 19, 2009
5,225
0
70
essex
Gigi you know what ever you decide we will all be behind you 100%only you can decide love larivy
 

DeborahBlythe

Registered User
Dec 1, 2006
9,222
0
Dear Gigi, I'm so sorry that Eric didn't seem to recognise you and compounded the pain by his confusing you with someone else. What a horrible feeling for you to be faced with. And how understandable that you no longer want to care for him at home.

There really is no answer which is completely pain free. You will feel guilty at times if you decide on full time care for Eric and you will feel wretched enduring the emotional torture that Eric's condition seems to be inflicting now. I don't envy you.

I was never in anything like as challenging a position as you have been. For me, my mother's admission to care homes was almost a full time preoccupation because I didn't feel content with anywhere and felt compelled to visit as often as I possibly could. Yet I knew I couldn't undertake to look after her at home. Damned if I did and damned if I didn't.

However, in the end, the fact that some other body was taking care of my mother did enable me to spend richer hours with her, without any of the awful upsets that you and others post so hauntingly about on TP.(There were other upsets unique to the care home situations, but nothing as urgent as your own cares and crises.)

I had a relationship with my mother which actually became stronger when she was in the care home. Not that she was particularly warm to me: she slept a lot and sometimes ignored me, but occasionally the former person shone through and anyway, her vulnerability made me come to love her more and more.

I think if the pressure of caring directly is removed, it allows or may allow you to see Eric through different eyes, to feel more relaxed about how he interacts with you, and also it may enable you to find more time to pick up your own life: a life which will continue, hopefully with vigour and stimulation even while Eric declines.
Thinking of you and sending you love.. and I couldn't agree more with whoever said that you should not compare yourself with others on TP. Everyone's situation is unique, whatever the intial impression may be.
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
I couldn't agree more with whoever said that you should not compare yourself with others on TP. Everyone's situation is unique, whatever the intial impression may be.

I agree with this too, gigi. So now I'm going to compare!:eek:

I was getting to your stage whan matters were taken out of my hands by a serious infection.

Gigi, coping with dementia is hard enough; coping with dementia plus infections is a totally different ballgame.

I know Eric has major physical problems, and these will be aggravating his dementia. I was told I wouldn't be able to cope on my own, and maybe someone needs to tell you that? If so, I'll tell you!:) I know you're considerably younger and physically stronger than me, but it's not just a physical problem, is it? Factor in the mental strain and there comes a time when coping becomes impossible.

I'm not trying to tell you what to do, the decision is yours alone, and it's a devastating one. But remember it doesn't have to be irrevocable, you can change your mind at any time. Not that that makes it any easier to bear!:(
 

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