After respite..the reality hits...

[gigi]

Still wading through your replies and reeling a bit from the overwhelming support. There are so many wise words written there I need time to consider everything you have said very carefully.

The fact that I have acknowledged to myself..(and TP) that I no longer want to do this has in itself lightened my load.

I can do the physical side of caring and get great satisfaction from it. The mental aspect I am now struggling with.

There is no way I'm going to make a hasty decision...it's too important for that.

For some reason I've always thought that it would happen to us as it happened to you, Hazel...that something would happen and matters would be taken out of my hands. In that case I wouldn't have to go through the agonies of making a choice.

I'll work it out. Thankyou for helping me through this.

Love xx

 

[ElaineMaul]

Dear Gigi,
I can only echo all the things others have said and send you a hug {{{{{Gigi}}}}}
I have read your threads over a very long time and never really felt 'genuine' in contributing as I haven't had to deal with anything like you have. You are such a lovely lady and my heart bleeds for you facing this.

However, I do recognise how you are feeling! Or rather .... when it hit my Mum. In truth, I feel I may have influenced my Mum because, in our case, Dad's aggression was such that I had to say to my Mum at one point that I was afraid that one day soon I might go round their house and find Mum on the floor with a cracked head, or worse, and that it wouldn't be Dad's fault, but it would have happened and I wouldn't be able to forgive myself. I think my Mum had been struggling to cope ..... but 'suddenly', just like you, she couldn't go on. Carer burn out I guess it might be?

You won't stop caring! In a care situation, it will be different. It won't be easy either! The Guilt Monster is ever present on my shoulders, so beware him!

But try not to beat yourself up too much about deciding that you have to make what ever decision you come to.

Take care,
Love Elaine

 

[burfordthecat]

Hi Gigi

I think you have reached one of those important forks in life's road. You have a choice either route can be the "right" one. But, please never forget that if you chose a route and decide it was the wrong one, you can back track and then go down the other way.

In my opinion, the mental stress of your situation must be making the physical caring an even harder job to do. It's all very well when the person you are caring "knows you" but when they believe you are someone else, that must be so heartbreaking. But in Eric's world, all is well and he has no idea of what he is doing to you emotionally. This is just one b i t c h of all diseases.

Whatever you chose to do, I know will be right for you and Eric. Please note that your own needs are just as important as Eric's. Ask yourself this question....if it was you with the disease, what would you want Eric to do?

Love and hugs to you both

Carina x x

 

[Nan2seven]

Dear Gigi,

I have experienced something very similar to what you are facing with Eric at the moment: Brian frequently doesn't recognise me and takes me for any one of three of his cousins or his sister - none of whom I remotely resemble. But when I have pointed out myself in many of the photographs around the lounge, he has said that they are of MR, someone he loved and who emigrated to Canada before he ever met me. He claims it is her even in our wedding photo and names the church where we were married. It is as though my entire identity has been stolen away, not to mention the 50 years we have known each other and the birth of our three children. But I am usually "reinstated" within a few hours. (Not before I have sometimes got pretty upset.) If with you and Eric nothing changes, then I understand how sad, rejected and overlooked you must be feeling.

Obviously your final decision is not going to be based on this alone, but whatever it is it will be the right one for you both.

Thinking of you and sending love, Nan XXX

 

[gigi]

What is so frustrating is that there is so much I want to say and discuss with you all...

I'm struggling to find a slot of "me" time to do it. This is such an important issue.

Between looking after Eric and carers and sitters I'm probably not going to be able to get my head round this properly until the weekend. I'm struggling but Eric is the focus..(I really hope I don't upset anyone by saying that..it's not my intention)

So I start to resent the whole thing..the carers and the sitters are lovely people..our life revolves around keeping Eric comfortable and cared for here. Which is fine.

What about me?

Love xx

 

[nellbelles]

What about me?

Well that sums up for me the last 20 years

Even when I have ill or in hospital,everything had to be (and still is ) geared to Tom.

No help kid, but you ain't on your own.

 

[gigi]

No help kid, but you ain't on your own.

I know, Helen. I also know that many of you have much more to deal with than me..which is why admitting to not wanting to do this is causing me so much turmoil.

I also know that I shouldn't compare, as each of our situations is unique to us. But it's very difficult not to.

It's also very hard not to feel selfish by admitting that I , too, want some space and a bit of a life.

Love xx

 

[burfordthecat]

It's also very hard not to feel selfish by admitting that I , too, want some space and a bit of a life.

No Gigi, you are not being selfish....just honest. Being in a relationship is all about give and take but when dementia gets involved, it all becomes very one sided. and it is the poor carer who does the giving.

If you need some space then make some changes, and kick the guilt monster hard, where it hurts. Once you feel you are in a better place, Eric will also benefit because you will feel better in yourself.

Sending love and hugs to you both

Carina x x

 

[Helen33]

Hi Gigi,

I think that when dementia takes hold, there is a huge shift in the holding of responsibility. You have a responsibility to Eric but you also have a responsibility to yourself. I think this is very highlighted in the younger people where 'work' can be a very big issue. Often, probably most often, carers have a responsibility to bring in an income and there is often a very real demand to have to think about the self.

I try to think of it as 'one as well as the other' rather than 'one instead of the other'. It is a very tough role to have this massive responsibility of two lives.

This is about you as well as Eric

Love

 

[gigi]

I try to think of it as 'one as well as the other' rather than 'one instead of the other'

A good way of looking at it, Helen, thankyou..

I'm still coming to terms with the way I'm feeling about all of this..forgive me for going on about me but it's important that I get myself sorted out...

Last night I cracked when the carer came to get Eric ready for bed. We'd had a long evening of circular questioning which left me in no doubt that Eric sees me as his first wife.

The carer was symathetic and understanding..and rolled out the usual phrases..it's not Eric, it's the illness.

I think it's Maggie who has the signature.."If you can't change something..change the way you think about it"

Perhaps that's what I need to do. Eric is ill and I do tend to forget that because I've been viewing him from the wrong angle. I've been comparing him to the person that was..and probably resenting the changes that this awful disease has brought to him, instead of accepting him as he is now..a very sick man.

If you need some space then make some changes,

Yes, Carina... Thankyou.

It feels as though someone just switched the light on!

Love xx

 

[living in hope]

Hi Gigi,
I understand how you are feeling, I was struggling with the mental strain of looking after Brian and felt guilty for not being able to cope. Matters were taking out of my hands due to a stay in hospital and increased behavioural problems so he went straight into respite and SS assessed that he was safer there where he could be monitored 24/7 and would not have access to things that could hurt him (kettles etc). Nearly ten months on and if I'm honest I still feel guilty that I cannot manage him at home, but I also know if I tried and something happened to him (got out and was injured/injured himself or someone else etc) I would feel much more guilty that I didn't do my best to ensure his safety! which means full-time care.
Brian often thinks I'm his mam but as I have not got 24/7 care I am able to cope with this and keep remembering its Alzheimers not Brian that cannot always remember me as me!
No easy answers Gigi, but I know you will do what is right for you both and as others have said, decisions can always be reversed if circumstances change, nothing is written in stone!
My love to you both,
Lorraine

 

[sunray]

Gigi, it is hard when life brings us back to decision making time again. I go round that spiral a bit. I put my mum into care in 2001 and she is still going aged 91. Now I am looking at a future when I might have to put my husband aged 67 into care and that is a scary thought.

For me looking after Ray it is confusion, slowness, lack of co-ordination resulting in frequent falls, incontinence and sometimes complete lack of co-operation that is bringing this to a head. We all have things we can't seem to get our mind around and for me it is harder if I have been up half the night doing a clean-up as well as doing all there is to do through the day.

Here we don't get over-night carers either so that is one reason a lot of people give in to putting their husband/partner into care, just plain old fashioned tiredness. You simply cannot function well if you are trying to care for someone 24/7/365.

As you say Eric is sick and that is a consideration also. You are not alone, we will all be there soon too.

Sue.

 

[Tender Face]

..the carers and the sitters are lovely people..our life revolves around keeping Eric comfortable and cared for here. Which is fine. What about me?

It's also very hard not to feel selfish by admitting that I , too, want some space and a bit of a life.

Gigi, hope you don’t mind me throwing this little thought in: You have made me reflect on my mum caring for dad ... I’ve often stated on TP what a ‘feisty independent’ mum was in terms of her self and ‘not wanting strangers (i.e. carers) in the house’. (How she referred to them).

When dad’s mobility started to fail there was obviously an issue around her physically coping, she ‘got by’ with the help of caring neighbours when the need arose. I do believe if dad had survived much longer there would have been a need for a steady stream of ‘professionals’ coming in to help. Bearing in mind when mum was faced with the fact she would not be able to manage on her own with just my help after her hospitalisation, her feistiness about remaining in her own home dissolved, preferring residential care for herself to having ‘people coming in’ - such was her strength of feeling.

I am sure for many people carers/sitters etc become friends, some may not be at all troubled by having ‘strangers’ coming in to help, others positively welcome them. My mother wouldn’t have been one of them (and I’m not sure I ever would). I suspect for her, caring for dad, that’s where the line would have be drawn .... her ‘space’ (territorially alone) was a huge need for her ....

Sorry if that’s totally off track,
Love, Karen, x

 

[sad nell]

Gigi wanted to send you hug and say how proud i am of you, for being able to be so totally honest, Helen hit the nail on the head, and this 100% responsibility and lack of any normal life is hard to bare. I chose to have Trev home , not just for his benefit, but mine also , when he was on assesment and i was visiting daily , that really felt like no life and one that i had no control over, at least with a lot and i mean alot of support , i can still have some time with Trev in our home without feeling constantly watched, and avoids all that travelling which was becoming such a toil of a pleasure that i dreaded it. So home care was the lesser of the 2 evils( know that sounds bad , but just trying to say as it is) Trev is not well at mo and when he is not well i find i deal better because it brings out my compassionate side more, some days just feel like surviving not living, so please do not feel bad, think we all have those feelings at some point living daily with AD love Pam

 

[gigi]

when he is not well i find i deal better because it brings out my compassionate side more, some days just feel like surviving not living, so please do not feel bad, think we all have those feelings at some point living daily with AD love Pam

Thankyou Pam...that sums me up in a nutshell too.

One of the seniors from the Dementia Team phoned thismorning about a new rail we're having fitted in the shower room to help Eric.

I told her I needed to talk. She is busy at work tomorrow but is going to come and see me in her own time once she has finished work tomorrow afternoon.

Love xx

 

[DeborahBlythe]

One of the seniors from the Dementia Team phoned thismorning about a new rail we're having fitted in the shower room to help Eric.

I told her I needed to talk. She is busy at work tomorrow but is going to come and see me in her own time once she has finished work tomorrow afternoon.

Gigi, I'm so glad that this person is going out of her way on your behalf. I hope she can help you. x

 

[Helen33]

Dear Gigi,

I told her I needed to talk.

I am so glad that this lady was so willing to listen - even in her own time I hope that it proves to be helpful to you Gigi

Love

 

[gigi]

Thankyou for being there..evenings are the worst.

They are a battle. My presence is demanded ..I'm being shouted now..and I keep shouting back "I'm on my way" or "I'll be there"

I'm sticking it out tonight because if I go back in there I'll end up in tears again.

Just for the record..it's Brigadoon tonight if anyone cares to share..

The shouting continues...Eric wants me beside him "because he loves me"...which means watching Brigadoon with me and me pretending to enjoy it.

I've become very good at telling fibs over the last 2 or 3 years..but this is impossible.

If he would accept the laptop ..or me doing a crossword ..or anything else while I'm sitting with him it might be bearable.

But he doesn't. He gives me no peace, or space. If I don't give my undivided attention to what's on TV he becomes very difficult to deal with.

I was determined to stay on line tonight so that I could say how it is.

But the shouting continues..and I must go.

I'm too tired to resist. It's easier to give in to his demands.

Brigadoon awaits.

Love xx

 

[Skye]

Gigi, it sounds a nightmare! Things definitely need to change.

I hope the lady tomorrow recognises how desperate the situation is, and can come up with emergency respite to allow you time to think. You can't go on like this.

Love,

 

[TinaT]

Dear Gigi,

You are facing this problem head on and I do admire you so much.

From the outsiders point of view (and indeed the family) there seemed to be no question that it was right for Ken to go into the care home. But deep down I was not ready for it, I hadn't had time to work my way through it all and I've suffered for the past two years because of this.

This Christmas I think I reached the lowest point ever. I persuaded myself that I was the 'lowest of the low' allowing this to happen to Ken. I felt worthless and a betrayer. I really reached rock bottom and didn't stop crying for two days.

I didn't visit Ken for a few days. I couldn't face it. When I did pull myself together and visited him, perhaps for the first time I really realised just how poorly he is, how much help he needs, and how truely with hand on heart, I could not cope with him at home as well as the carers do in the care home.

I don't feel worthless any longer because I have finally, after all these years accepted the fact that he is a very different person because of his illness to the man who was my companion, best friend and soulmate for most of my life.

It is not his fault and it is not mine. Neither of us chose to live with the consequencies of this terrible disease but both of us have to live through it. I now realise I've always done the very best I can and will always do the very best I can. But I'm not superwoman.

I've tortured myself for a long time with the question 'what if the roles were reversed and Ken was my carer?' I now realise I just can't go down that road. It is a negative question which led me almost to self destruction. It didn't happen that way, he got the disease and I became the carer of a severely impaired man both mentally and physically. We will never know how he would have coped but he would have done his very best, just as I have.

I'm sure none of this makes sense to anyone else. I'm just glad that you have brought it out into the open and that you are tackling this head on honestly and openly.
.

xxTinaT