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Dementia’s journey

kindred

Registered User
Apr 8, 2018
2,523
Every day. To be brutally honest i’m scared how i’m going to handle things when Bridget’s not there anymore. I look into her eyes in the small films i take when i see her and i see a definite vacancy. The pupils are pinpointed, the eyes not really focused. There is a definite difference in her look that suggests to me that she’s deteriorating daily. Or am i just looking for these things? I don’t know.

She looks out at the world and i see utter confusion and i’m frightened for her. And then i’m at home going over these videos and i think, if i’m like this now what’s my world going to be like after she’s died. Most of the books i’ve got are about grief when someone has died but i’m suffering with it now. How’s it going to be different? God help me if it’s more intense because that would probably finish me.

Many say dementia and it’s effect on us left behind sort of prepares us for the eventual death. Can that be so? Is it too painful for someone to comment on this because i would really understand your reluctance. Am i asking too much from the Forum ? There’s on so much you can understand from these books.
guess you knew I would reply Peter! My world has changed, I’m a widow and the world is not very kind to widows any more than it is to carers. It’s hard to say if the grief is more intense, It could be but I won’t let it be. I can only deal with it little bits at a time. For a long time I was frozen, not even feeling grief, just shock. But then the grief came. I keep telling myself that grief is normal and trying to function alongside it. It is so hard to accept that the best part of your life is over. Things seem pointless without Keith. He was my world. But I am still here, still useful to society, and I can laugh even if I don’t mean it.
All my thoughts, Peter, I know this is agony. But as for whether I was prepared by dementia for the actual death, yes I think so. with love, Geraldine
 

Dutchman

Registered User
May 26, 2017
860
Devon
guess you knew I would reply Peter! My world has changed, I’m a widow and the world is not very kind to widows any more than it is to carers. It’s hard to say if the grief is more intense, It could be but I won’t let it be. I can only deal with it little bits at a time. For a long time I was frozen, not even feeling grief, just shock. But then the grief came. I keep telling myself that grief is normal and trying to function alongside it. It is so hard to accept that the best part of your life is over. Things seem pointless without Keith. He was my world. But I am still here, still useful to society, and I can laugh even if I don’t mean it.
All my thoughts, Peter, I know this is agony. But as for whether I was prepared by dementia for the actual death, yes I think so. with love, Geraldine
Thanks Kindred. The weather here (Devon) is horrible but somehow suits me as it keeps me cozy indoors. I’ve already seen Bridget this morning and it was a good visit in as much as she was responsive and didn’t just turn round and walk away. I’m taking your heartfelt advice and i’m trying not to let grief take me over. I try and have a goal each day and today is a long walk in the rain. Then i’m tired enough and have achieved something.

Keith was your world and Bridget is mine. Even though at the end, here at home, she wanted to escape, for many years she brought everything i ever wanted into a relationship. I see couples young and old and wonder if they ever appreciate each other enough because one day they too will be separated somehow. Love freely and tell each other regularly.

With love , peter
 

Dutchman

Registered User
May 26, 2017
860
Devon
Again the weather is awful here and i’m tempted to stay in bed because the rain is lashing against the window. I’m pleased i saw Bridget yesterday because that gives me break till next week. My heart can’t take any more visits than that.

Last night i meant to write and seriously thought about doing so about 1 o’clock this morning but the moment passed, i went to sleep, and now i don’t remember what it was that bothered me so much. Trouble is that so many things bother me. I think of so many things within this craziness of dementia and, like so many of you wonderful posters, the smallest thing sets me off again in thinking about the past present and future.

Perhaps i’ll post again when the mood is stronger and thoughts are remembered .

Peter
 

Dutchman

Registered User
May 26, 2017
860
Devon
i want to write while this is fresh in my memory. Each time i go to visit i try and and take a little video of our meeting. Replaying it later can give comfort but i’m i finding that in slowly moving through the film, bit like frame by frame, i’m trying to see any sign of recognition, some facial expression that i recognise as love for me. This is because many have said that in the end love remains. I mean, how do i live without the certainty that love does in fact remain.

Because, in the end, i’m looking for anything i can hang on to. All the memories are mine now and i’ve lost the ability to reminisce intimately with my darling wife of 30 years. Hers is a different life now with the care home her home. Where i live has all the paraphernalia of our life together. Today i’ve talked to the home. “ Hi Peter, yes she’s just having her coffee in the Lounge, sitting next to Olive” . So normal, so very far away.

So, am I doing myself any favours searching for recognition? Probably not. Trouble is i’m addicted to it and the complex grief that i feel , that we all feel , means i’ll be searching for a very long time still. And that is torture.

Peter
 

big l

Registered User
Aug 15, 2015
63
I must ask again Dutchman are you still seeing your counsellor? Dementia carers (according to the script) suffer from bereavement at each stage of deterioration in their partners. I can't remember the proper name but basically it's bereavement grief for every stage of the dementia journey. You cannot reverse Bridgette's illness, but you can present yourself in a non analytical way. Dutchman, ask yourself (honestly) why you make these videos? Wouldn't you get a much happier memory by trying to engage with Bridget as best you can? At best she must be wondering (ok - I know) why you're poking a camera through the window at her don't you think? Smile at her wave at her make funny faces for her and WATCH her response rather than this constant, constant analysation. You are not going to present a warm and welcoming image from behind a camera are you Dutchman?
 

Dutchman

Registered User
May 26, 2017
860
Devon
I’ll do as you suggest because I believe you’re right. This journey I’m on brings up all sorts of issues that I handle better than others. It takes others to highlight to see what I cannot because grief sometimes blinds me to what works best.

Thanks again. I wish I could offer others good advice in their circumstances but I’m probably the last person at the moment to do so. But I’ve been involved in this dementia journey so who knows what I could offer.
Peter
 

Lirene

Registered User
Sep 15, 2019
236
I think this is the right thing to do now Peter. Rewatching all these videos is just torturing yourself over and over again. The videos are in the past once they are taken, and you are living in the past rewatching them. Bridget living in the present is how to view reality.
The past is gone, the present is reality and the here and now. The future - well that’s really the decision of the Lord and try as we may we will never ‘see’ it - only when it is the present - the here and now. Bless you Peter. May the Lord ease your mind and help you to live one moment at a time. My prayers for you and everyone xx
 

Dutchman

Registered User
May 26, 2017
860
Devon
i’ve been to my counsellor for the last time as Lockdown seems a good time to call it a day. I just can’t keep going over the same ground as it doesn’t seem to do any good. it’s just time now i believe that will make the difference.

Bridget is quite happy now to acknowledge my coming to see her but is soon distracted and goes back to her chair. I gave her a soft toy cat today which she put on her lap and stroked. I hope it give her some comfort. I’m,of course, devastated that she no longer knows me as her husband and that i get little joy going to see her. But now the sharing has gone, taken by dementia, and that part of my life with Bridget that meant so much has been taken too.

Bless you all
 

Dutchman

Registered User
May 26, 2017
860
Devon
guess you knew I would reply Peter! My world has changed, I’m a widow and the world is not very kind to widows any more than it is to carers. It’s hard to say if the grief is more intense, It could be but I won’t let it be. I can only deal with it little bits at a time. For a long time I was frozen, not even feeling grief, just shock. But then the grief came. I keep telling myself that grief is normal and trying to function alongside it. It is so hard to accept that the best part of your life is over. Things seem pointless without Keith. He was my world. But I am still here, still useful to society, and I can laugh even if I don’t mean it.
All my thoughts, Peter, I know this is agony. But as for whether I was prepared by dementia for the actual death, yes I think so. with love, Geraldine
i’ve checked today and Bridget’s is continuing to hold the soft toy cat. It brings it home to me that my wife has moved away from a intelligent, smart and articulate lady to being comforted on a very basic level by a soft toy. The difference is heartbreaking but i’ve given her a something that seems to give her pleasure. I know that she’s better off where she is ( oblivious of Covid ) and know that if she’s was at home now my life and hers would be hell. Locked up, not understanding the lockdown situation and probably fighting to get out the house. At least i can sleep at nights.

Kindred, my thoughts are always near for you. Many things seem pointless for me also. My daughter sent me a picture she had of Bridge and me taken a few years ( pre dementia) ago and we were just an ordinary couple doing ordinary things ( visiting the NT I think) and with no thoughts of what was to happen. Of course not, we tend to take for granted ordinary days. I certainly didn’t say i love you regularly enough, hold her enough, appreciate her love for me enough. Kindred i value your perceptions and your comforting support.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,003
High Peak
Good to know Bridget likes her cat! Maybe it reminds her of the cats you used to have. Perhaps she even thinks it IS her favourite cat - that would be nice, wouldn't it, if it brought her comfort?
 

Dutchman

Registered User
May 26, 2017
860
Devon
Im completely the wrong person to
guess you knew I would reply Peter! My world has changed, I’m a widow and the world is not very kind to widows any more than it is to carers. It’s hard to say if the grief is more intense, It could be but I won’t let it be. I can only deal with it little bits at a time. For a long time I was frozen, not even feeling grief, just shock. But then the grief came. I keep telling myself that grief is normal and trying to function alongside it. It is so hard to accept that the best part of your life is over. Things seem pointless without Keith. He was my world. But I am still here, still useful to society, and I can laugh even if I don’t mean it.
All my thoughts, Peter, I know this is agony. But as for whether I was prepared by dementia for the actual death, yes I think so. with love, Geraldine
i’m probably the worst person to give advice, but for what it’s worth, i’m becoming to realise a couple of things. Yes grief is normal and with all we have to deal with in the grieving journey I have given myself an impossible weight to carry. I realise that now. Acceptance, ah that’s another thing that takes forever to come to terms with, if at all.

So for those who are heartbroken and crying out for comfort, all i can say, in my own personal experience, is never underestimate the powerful effect dementia can have on your body and mind and never overestimate your ability to cope with its consequence. You’re never weak, ,only a human being doing the best you can in circumstances that will try the patience and strength of some of the best of us. . Always cry, being brave hardly works and in the end, as kindred has said, the shock of it all will freeze you out, knock you sideways. It’s normal. Be very, very, very kind to yourself.

Kindred, i look at pictures of me and Bridget together and, i too, find it hard to accept. I wondered today who will love me now, now that Bridget is gone as my wife and knew me inside out. The futures unclear. It scares me a little.

With love, Peter
 

kindred

Registered User
Apr 8, 2018
2,523
Im completely the wrong person to


i’m probably the worst person to give advice, but for what it’s worth, i’m becoming to realise a couple of things. Yes grief is normal and with all we have to deal with in the grieving journey I have given myself an impossible weight to carry. I realise that now. Acceptance, ah that’s another thing that takes forever to come to terms with, if at all.

So for those who are heartbroken and crying out for comfort, all i can say, in my own personal experience, is never underestimate the powerful effect dementia can have on your body and mind and never overestimate your ability to cope with its consequence. You’re never weak, ,only a human being doing the best you can in circumstances that will try the patience and strength of some of the best of us. . Always cry, being brave hardly works and in the end, as kindred has said, the shock of it all will freeze you out, knock you sideways. It’s normal. Be very, very, very kind to yourself.

Kindred, i look at pictures of me and Bridget together and, i too, find it hard to accept. I wondered today who will love me now, now that Bridget is gone as my wife and knew me inside out. The futures unclear. It scares me a little.

With love, Peter
Thank you Peter, your advice is sound and appreciated. Not sure if I will ever find acceptance, I dont know how to go about that.
I just function and try to make others feel loved and make them laugh if I can.
I have accepted it is my job to give love to others now. I know, I know, it can feel as though our time being loved is over. It scares me too, the future. I think we have seen and endured too much to be very hopeful.
Thank you with all heart and at least we can hope for some small healing sometime.
With love, Geraldinex
 

Dutchman

Registered User
May 26, 2017
860
Devon
oh and by the way, my cat pictured was called Bob and he was the most adorable affectionate cat going. He died just after Bridget went into the home. Double whammy.
 

Dutchman

Registered User
May 26, 2017
860
Devon
i’m writing because Bridget went into hospital this morning. The home found her on the floor of her bedroom and the hospital have found out that she’s had a small bleed on the brain, caused by the fall or she fell because of the bleed they cannot be sure. I was allowed to sit in A and E with her but she was sedated most of the time for a CT scan. She’s staying in overnight to be monitored. I’m very worried about the outcome of this and how it’s going to leave her. I’m phoning the hospital tomorrow to see how she is.

My poor darling looks dreadful with a bruised chin and cut lip. Both mendable apart from her damaged brain. This is a wake up call for me showing me that sooner or later this had to happen but ive fooled myself into thinking that it would be not just yet. I was just about adapting to life as it was.

So this opens a whole new avenue into grief, because what was bearable with going to the home and seeing her enjoying her flowers, now could mean her condition is more than i can bear. I know i should second guess the outcome of this new development but i’m very worried and fear i’ll lose her soon. I can’t see her in the hospital ( not allowed) otherwise i’d be there now next to her bed. Bloody Covid.

So i have to be guided by the hospital and the care home in what happens next. How i’ll get through tonight is anyone’s guess.

Peter
 

Woo2

Registered User
Apr 30, 2019
2,942
South East
I’m so sorry @Dutchman , hope that Bridget has a speedy recovery and is back at the home soon and comfortable . It is such a worry for you ,she is being well looked after I’m sure . Take care
 

Lirene

Registered User
Sep 15, 2019
236
Peter, I am so very sorry to hear this news about your darling Bridget, let us pray that the outcome does not seriously affect her mental and physical health and well-being. You however, must not go to pieces and you have to be of strong mind and strong willed in order that the very best is done for Bridget both in hospital and when she returns to the home. Write down the questions you want to ask, question everything and make sure the absolute best is being done for Bridget. Does her medication need to be reviewed? explain how she is, can anymore be done to help her ? is she in the best place ? Is she getting the best care ? Your focus should be Bridget and now she is in the arms of the wonderful NHS get all the help you can from them in respect of medication, advice and continuing care funding. The NHS are absolutely first class and you need to rely on them to do their utmost Focus your mind, straighten your backbone and fight for both your futures. You are both in my prayers as always, and may the Lord give you both the strength to get through this xx
 

Bikerbeth

Registered User
Feb 11, 2019
1,706
Bedford
I am also sorry to hear about Bridget’s fall. I too hope that she is being kept comfortable and can return to the home soon.
So difficult for you too when as you say you were just adapting and now another change. Take care.