Dementia’s journey

[Dutchman]

Hi everyone. At least the sun’s shining at the moment so that’s nice.

The council have now taken over the funding of Bridget’s home. It’s £850 a week and they’ve still got to finalise the finance assessment for income. In a way it’s a relief but also, it’s another responsibility I don’t have and I feel it settles things down. Almost like .....that’s it now, Bridget’s well and truly in the system. There always been for me that slight reluctance to accept that she should be there and the very remote possibility she could return home. I know it’s fantasy but the thought remains.

Love to you all

Peter

 

[Dutchman]

Strange thing today that has happened before. I’m in my front room just about to walk and turn away from the garden windows when out of the corner of my eye I see movement. For just one instant I believe it’s Bridget standing there and she’s smiling and happy to see me. I’m brought up suddenly with shock. My mind has created a phantom and placed her back home.

As I say, it’s happened before. I suppose I want this to happen so much and my mind is hard wired with her presence in the house. I’ve come home before and seen her through the window, sitting on the sofa.

Normal? I don’t know unless someone admits it’s happened to them.

So it goes on. Peter

 

[kindred]

Strange thing today that has happened before. I’m in my front room just about to walk and turn away from the garden windows when out of the corner of my eye I see movement. For just one instant I believe it’s Bridget standing there and she’s smiling and happy to see me. I’m brought up suddenly with shock. My mind has created a phantom and placed her back home.

As I say, it’s happened before. I suppose I want this to happen so much and my mind is hard wired with her presence in the house. I’ve come home before and seen her through the window, sitting on the sofa.

Normal? I don’t know unless someone admits it’s happened to them.

So it goes on. Peter

Peter, Keith is a gentle ghost in my house now, he’s always looking round the door to see how I am. Kindredx

 

[marshal]

Strange thing today that has happened before. I’m in my front room just about to walk and turn away from the garden windows when out of the corner of my eye I see movement. For just one instant I believe it’s Bridget standing there and she’s smiling and happy to see me. I’m brought up suddenly with shock. My mind has created a phantom and placed her back home.

As I say, it’s happened before. I suppose I want this to happen so much and my mind is hard wired with her presence in the house. I’ve come home before and seen her through the window, sitting on the sofa.

Normal? I don’t know unless someone admits it’s happened to them.

So it goes on. Peter

I feel the silent presence of George in the house all the time. Even when I go out the back , I expect to hear him shout to me " Are we having a brew Jue?" I feel comforted by these feelings also reduced to tears at other times. As much as I hate being sad and upset I do not want to be without the comforting feeling I get as though he is close by. When I go to bed I always have a moments chat and say Good Night. Daft I know, but it just seems right at the moment.

 

[Wifenotcarer]

I feel the silent presence of George in the house all the time. Even when I go out the back , I expect to hear him shout to me " Are we having a brew Jue?" I feel comforted by these feelings also reduced to tears at other times. As much as I hate being sad and upset I do not want to be without the comforting feeling I get as though he is close by. When I go to bed I always have a moments chat and say Good Night. Daft I know, but it just seems right at the moment.

Same for me. It never happened when he was in the Care Home or hospital (when I had unlimited visiting) but since he died I sense his presence in our house/garden often. It is not surprising because he chose this house, then refurbished it, built an extension and made a fair bit of the furniture. What is odd is that when I 'see' or sense him around he is his younger self, which makes me feel awkward that I am an old woman.

 

[Dutchman]

I’v just returned home from seeing Bridget. I’m thinking if I need to see her more often so she’ll have a chance of remembering me. So I’ve phoned the home to ask their advice.

The manager is more concerned with my state of mind as she feels Bridget is well cared for and won’t remember any visit anyway. She says.... You’re relatively young
( I don’t feel it!) so you need to be thinking about yourself more, about moving on. You’re the only one who visits regularly, and although you love your wife there’s only so much you can do, which you’re doing anyway. Only one other man visited his wife
( every evening) and he died one year after she did.

I know it’s advice well meant but I don’t want to “move on” as I feel that would be a betrayal. And anyway, how can anyone move on to a different life when the one they love is still there needing support even at a distance. I’m stuck in limbo and move from ok to misery at a moment’s notice.
On radio 4 today it was said that happiness is accepting the difference between what the world is actually like and our expectations of that world. Intellectually true, emotionally difficult.

peter?

 

[notsogooddtr]

It is true though, acceptance is often the only way to peace if not happiness

 

[Jaded'n'faded]

Of course you don't want to 'move on' - as you say, your wife is very much still there. You will never turn your back on her and walk away, but perhaps the idea of 'letting go' is more apt. I know you hate that she is in her own world now and has her 'new' life at the care home that seemingly excludes you. That must hurt you every day... but it isn't going to change, so in many ways you have no choice but to accept it, no matter how hard that is.

I wish I could help you to do that, as I'm sure all your other friends here do. Like the manager at the CH, we worry about you!

Take care, Peter, we're all here for you.

 

[Dutchman]

Here’s a brand news emotion brought upon by a conversation i’ve just had with an Admiral Nurse. Just put the phone down and feel i’ve gone back several steps. I was talking to her about how i felt today and trying to help me she suggested that as dementia sufferers are better managed, in some cases, they can return home. How would i feel about that?

God, my heart missed a beat, as i’m only just adjusting to life without Bridget. To have her return here would be heaven if she was cured of dementia ( as if it was some condition that was curable) and we would pick up our lives again. But to take the chance of caring for her now she’s in the later stages of dementia and what else would develop and to lose her wonderful care home, well, it’s out of the question. My life would be in turmoil again. But, of course, i’d love her back in an ideal world. So i ask myself “ am i that desperate enough to have her back under any circumstances?” So i’m put in a quandary that will stay with me for the time being and upset me.

When Bridget began to display symptoms we lived with it, coped day on day and gradually I got used to it, then it built up to the point where she needed to go to the home. I guess the nurse, knowing my distress at losing Bridget, was suggesting something that could be an option. But it’s an option that very troubling.

Wish i’d never phoned now!

peter

 

[Pusskins]

Hi Peter - If Bridget no longer recognises you, I wouldn't do it. It would be like a double edged sword, you would love having her back in your life, BUT she's not the Bridget you miss. I have often thought of bringing MH home, but I know I wouldn't be able to live with the stress. If he was completely bedridden and I could get regular care visits, I might consider it then, but having said that, it would kill me watching him slowly dying 24/7.

This situation is the absolute pits for all of us and I've said it before, but I don't know what I've done to deserve it. I was sitting here this morning trying to think ahead and all I see is heartache forever. MH is getting better care where he is although I would love to have him here with me. However, I know that is just wishful thinking.

In a way, I think it was a bit irresponsible of the nurse to suggest it to you as it has thrown you into more turmoil again.

 

[Dutchman]

Thank you for your advice on this and I love you all for the support given to me. Many times over the past 3 years I’ve felt it’s all hopeless and truly I’ve felt little point in continuing. But there’s been, and still are, so many people willing to give their time to just be there for me. So thank you.

I’ve not always been there for other people though, in as much that I don’t always follow posts. I believe as things get better ( when !!) I’ll have more emotional space to support others.

I believe I’ll be here for all the foreseeable future and I’ve been at the coal face of this dementia enough now to experience most things so there is plenty of time to help where I can.
Peter

 

[Dutchman]

I thought I’d really turned a corner this morning but it’s not to be. C S Lewis said that “sorrow is like a long valley, a winding valley where any bend may reveal a totally new landscape “ The good weather here has highlighted the fact that you I’m on my own and when we used to sit together just enjoying the sun. You know what I miss most? It the noise of someone else being here, moving around, their body being here and there, asking and answering questions.

I have distractions, sure, but not enough. I almost wish I had a bad cold to suffer with so at least that would keep me occupied. I so longed for peace when she was here in those last days and now it’s peaceful here I hate it. Is loneliness like this for everyone? How can some say they enjoy their own company?
I must find something to do otherwise I’ll just sit here feeling sad.

Peter

 

[kindred]

I thought I’d really turned a corner this morning but it’s not to be. C S Lewis said that “sorrow is like a long valley, a winding valley where any bend may reveal a totally new landscape “ The good weather here has highlighted the fact that you I’m on my own and when we used to sit together just enjoying the sun. You know what I miss most? It the noise of someone else being here, moving around, their body being here and there, asking and answering questions.

I have distractions, sure, but not enough. I almost wish I had a bad cold to suffer with so at least that would keep me occupied. I so longed for peace when she was here in those last days and now it’s peaceful here I hate it. Is loneliness like this for everyone? How can some say they enjoy their own company?
I must find something to do otherwise I’ll just sit here feeling sad.

Peter

Ah, there you have it Peter. Something to do that feels it has any kind of meaning. I think this is why people recommend pets. With you all the way. when Keith was very ill he loved being surrounded by teddies and soft toys from our sons youth. He said to me thank you for looking after the teddies. So that’s what I do. Kindredx

 

[None the Wiser]

Peter, there is nothing logical about any of this. I know the moment my husband goes into a home I will feel exactly like you do, though I’ve spent weeks now wishing for peace, and time for myself. When admitting defeat and transferring our loved ones into a care home we don’t solve the problem, we just change the dynamic, and change the worries. I say this as someone that has to face ‘defeat’ very soon.

 

[Dutchman]

Peter, there is nothing logical about any of this. I know the moment my husband goes into a home I will feel exactly like you do, though I’ve spent weeks now wishing for peace, and time for myself. When admitting defeat and transferring our loved ones into a care home we don’t solve the problem, we just change the dynamic, and change the worries. I say this as someone that has to face ‘defeat’ very soon.

I’m not sure if I’ve said this before but please plan for when the day finally arrives. I do hope you won’t be backed into a corner like me and will have a little time to prepare. Have someone with you so you won’t be alone, preferably for the rest of the day. I won’t pretend or lie; whatever happens it will be the hardest thing you’ve done and it will be devastating. That’s why you need support.

I feel shame now, sitting on the sofa next to Bridget hoping she was gone and I could be alone, I was so desperate at the time. Regrets are awful so love him as much as you can so regrets are few

Peter

 

[Pusskins]

I’m not sure if I’ve said this before but please plan for when the day finally arrives. I do hope you won’t be backed into a corner like me and will have a little time to prepare. Have someone with you so you won’t be alone, preferably for the rest of the day. I won’t pretend or lie; whatever happens it will be the hardest thing you’ve done and it will be devastating. That’s why you need support.

I feel shame now, sitting on the sofa next to Bridget hoping she was gone and I could be alone, I was so desperate at the time. Regrets are awful so love him as much as you can so regrets are few

Peter

@Dutchman It was exactly the same for me and of course I have deep regrets, but if I'm realistic, if the boot was on the other foot and I had been the one with dementia, I'm sure MH would have felt exactly the same as I did. Hindsight is a wonderful thing. I would still love to have MH home with me, but if I'm thinking rationally, I know it wouldn't work. I'm convinced it's the routine at the rest home that has worked wonders for him. I could not establish any kind of routine with him at home. However, I was wondering today, how long will it take me to get used to my new normal. It seems an awfully long way off.

 

[Dutchman]

Here we go again. Same old feelings when I leave after a visit. You must be sick and tired of it as much as I am.

This time I was a few feet away from Bridget while she was have her tea and biscuits looking at her through the window of the sun room. I’m just trying to get inside her world, her old familiarity if you like, to somehow be with her more intimately. So I linger longer outside the window just looking and eventually I can’t stand it anymore and say to her “ I’m leaving now, I’ll be back tomorrow “ and she says “ lovely “ and I wave and she waves. By this time I holding back the tears and I walk away.
I’ve sort of realised that there is nothing anyone can do to radically change anything for me. We talk on the Forum, I have my counsellor, friends are genuine but limited in comfort. So I’m left just with myself to fall back on and I’m struggling all the time. It’s so impossibly hard.

I really believe once Bridget goes and I won’t have to care for her like this then my life won’t have much meaning. But I’m a coward so I don’t even have the comfort of escape.

Peter

 

[None the Wiser]

I’m not sure if I’ve said this before but please plan for when the day finally arrives. I do hope you won’t be backed into a corner like me and will have a little time to prepare. Have someone with you so you won’t be alone, preferably for the rest of the day. I won’t pretend or lie; whatever happens it will be the hardest thing you’ve done and it will be devastating. That’s why you need support.

I feel shame now, sitting on the sofa next to Bridget hoping she was gone and I could be alone, I was so desperate at the time. Regrets are awful so love him as much as you can so regrets are few

Peter

Thank you Peter. I am trying to do as you recommend. However, life sometimes can’t be ordered or neatly packaged, and I’ve a feeling that even the best laid plans around this major change in our lives won’t stop things going their own way.
Please take care.

 

[Dutchman]

I have a problem that, no matter where I look there doesn’t seem to be a straightforward answer.

Was I, in some way, to blame for my wife’s dementia. I keep going back to the something that happened while we were on holiday. We were sitting in our room and suddenly Bridget lost her breath and had to sit quickly. This happened again the next day. I believe now it was minor strokes. Without an immediate diagnosis I’ll never be sure and this haunts me. Why didn’t we go to the doctors then, why didn’t I insist? I was weak and didn’t want the inconvenience to be honest. Bridget seemed ok for the rest of our holiday. That’s why I believe I’m a selfish man, I really only think of myself.

I know this is all history now but to be convinced that I did nothing to contribute to Bridget’s dementia, that it was there waiting to happen anyway, would be some form of comfort.
And perhaps I’ll never know.
Peter

 

[Dutchman]

Am I really that bad, because I think I am. I have instances of where I was selfish that I can’t even admit to anyone, even my counsellor. And that impacts on my thoughts of Bridget now declining with dementia and how I could of done more for her. She was so not self centred, a complete opposite to me.

But I didn’t go with other women, didn’t gamble or drink. But I still believe that I’m to blame somehow. I’m reaching out now because I’m in a hell of a state about this and crying and really can’t see much point to anything now Bridget has become a virtual stranger to me.

peter