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Dementia’s journey

Dutchman

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May 26, 2017
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Hi @blackmortimer @Old Flopsy @Jaded'n'faded and anyone else I’ve missed.

Talking about rabbit holes-my minds just gone down one because Bridget keeps being sick and they’re not sure why. I, of course, think the worse but know the home have it under control and can do stuff I couldn’t do.
Again I don’t have any control and must leave it to others. Helpless and somewhat redundant.

Peter
 

Dutchman

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May 26, 2017
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Does anyone have similar things happen to them? I just got back from a visit to the home, I’ve driven here into my drive and I can’t find enough energy to even get out of the car. The upset of the endless dementia experience drains me so much that I’m mentally and physically tired all the time. I’ll go in doors and just sit down and the enthusiasm for anything disappears.

Of course, that’s when remembering starts. I pull to pieces my visit today and remember the tiny details - what she looked like, her holding a picture of us both, the carer stroking her face encouraging her to look my way, Bridget giving a little wave at the end. I hold on to these details because they’re like gold dust till the next time.

Peter
 

Dutchman

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May 26, 2017
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I’m encouraged to keep a journal. Says it helps to unload . WRONG. I’m writing and I think what is ever going to happen to me. I know this sounds pitiful but it frightens me. All the time Bridget is alive I have some semblance of a connection with her. Once dead I’m really alone. Then what?

On my visit today she was holding a picture of her and me in better times on her lap and I dread to think she feels a recognition of who we are and what we were. To feel that she is pining after us as a couple is extremely upsetting. I’d rather her not know. I worry all the time about her being upset.

oh what’s the point? This is never going to go away is it. Just when I feel a bit ok then I dissolve into regrets, grief and tears

Peter
 

kindred

Registered User
Apr 8, 2018
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I’m encouraged to keep a journal. Says it helps to unload . WRONG. I’m writing and I think what is ever going to happen to me. I know this sounds pitiful but it frightens me. All the time Bridget is alive I have some semblance of a connection with her. Once dead I’m really alone. Then what?

On my visit today she was holding a picture of her and me in better times on her lap and I dread to think she feels a recognition of who we are and what we were. To feel that she is pining after us as a couple is extremely upsetting. I’d rather her not know. I worry all the time about her being upset.

oh what’s the point? This is never going to go away is it. Just when I feel a bit ok then I dissolve into regrets, grief and tears

Peter
Peter, I would never venture to say this unless I had been through it and you know I have. If there is any point, it is that Bridget is Alive, you can see her, you can see the sun on her skin, the ghost of her smile and so you can reach out your hand to touch her. You can hear her voice.
Please please mine all the gold dust you can from this. It will help later on. Try not to anticipate the time when you will be alone, I truly feel Keith’s presence and it may not feel as stark as you dread. With love Kindred
 

Pusskins

Registered User
Jun 6, 2020
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New Zealand
I am so comforted by your above message to Dutchman @kindred . Now this might sound ridiculous but I have to ask. You said you can feel your husband's presence. I hope this will be the case for me, but I might have moved from our family home by then and am worried MH's presence would not be felt in new surroundings. I feel silly for even asking this.
 

kindred

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Apr 8, 2018
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I am so comforted by your above message to Dutchman @kindred . Now this might sound ridiculous but I have to ask. You said you can feel your husband's presence. I hope this will be the case for me, but I might have moved from our family home by then and am worried MH's presence would not be felt in new surroundings. I feel silly for even asking this.
Oh my dear so good to hear from you. Not at all ridiculous. Keith’s presence is with me in all the greetings cards he sent me, and wrote in so eloquently, in the necklaces he bought me, in his teddy bears. All around me, as though I am in a forever bubble with him.
With love, kindred
 

Susan11

Registered User
Nov 18, 2018
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I am so comforted by your above message to Dutchman @kindred . Now this might sound ridiculous but I have to ask. You said you can feel your husband's presence. I hope this will be the case for me, but I might have moved from our family home by then and am worried MH's presence would not be felt in new surroundings. I feel silly for even asking this.
I've mentioned this before but it is relevant. I used to speak to my Dad on the phone at 6pm every night when he was alive. He's died over 2 and a half years ago but at 6pm, where ever I am, I feel a tug at my heartstrings . I hold him in my heart. It doesn't matter where I am. I'm sure it will be the same for you.
 

blackmortimer

Registered User
Jan 2, 2021
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I’m encouraged to keep a journal. Says it helps to unload . WRONG. I’m writing and I think what is ever going to happen to me. I know this sounds pitiful but it frightens me. All the time Bridget is alive I have some semblance of a connection with her. Once dead I’m really alone. Then what?

On my visit today she was holding a picture of her and me in better times on her lap and I dread to think she feels a recognition of who we are and what we were. To feel that she is pining after us as a couple is extremely upsetting. I’d rather her not know. I worry all the time about her being upset.

oh what’s the point? This is never going to go away is it. Just when I feel a bit ok then I dissolve into regrets, grief and tears

Peter
No, Peter, it isn't going to go away. But I truly believe that the pain will ease. We have to keep on remembering that we make the mistake of thinking that our loved ones are still as we remember them. But I keep reminding myself that dementia changes all that. They have gone away to some other land where the normal rules don't apply, they don't (can't) reason as we do, don't presumably feel the same emotions as us. We cant get into their world and they can only glimpse ours fleetingly through the fog of dementia. So we have to stop beating ourselves up, remind ourselves that when we were the carers we did our best even if we don't think it was good enough. Accept that what we did was done out of love and whilst it often overwhelmed us, we could never have delivered the care that professionals can. But we did it out of love, out of a desperate desire to make things as good as we could. And that, of course, is why we still react when there's something wrong with their health now that they're in a home. We can't help thinking we must jump to and sort it out. At least, I do and then I have to to myself to relax, take a deep breath or count up to 20, and remember that they are now in good hands and will come to no harm.

I've not had the best of weekends. Margaret has always been deeply attached to Easter. Before dementia she always liked to go church on Good Friday because, she said, it was a quiet and peaceful time when she could reflect without any distraction. It was the one time she liked to go on her own and I respected that. Then we would both go on Easter Sunday. It would be a sort of metaphorical rebirth of our love and togetherness. But this year her dementia and the Covid changed everything. I simply couldn't bring myself to go to church at all. So I moped around, took the dog for a long walk on Sunday, tried to think of times when things were so much different, and eventually talked myself into a slightly better frame of mind. I've stopped fooling myself that Margaret will "recover", that this is how it has to be, that she may well outlive me so I will try and accept things as they are and be grateful for what we had over so many years. At least it gives me some kind of a goal.

Sorry, if I sound b it "preachy" - not intentional!

God bless,
 

Dutchman

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May 26, 2017
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I’ve just talked to a friend of ours who visited to collect some of Bridget’s art supplies. They’re going to a local school so at least they’re being used.

Asking after Bridget she said that I’d done so well looking after her for so long here at home. Strange that some expected me to just give up and it never entered my head to arrange residential care which only happened after I was forced into a corner like a frightened dog.

But, you see, I just don’t feel that way because I never felt it a duty or that I wanted her to leave me prematurely so that the dementia behaviour would stop. Sure it was extremely frustrating and bloody annoying but I cared for her because I love her.

In the end I had no choice but to let her go as she was trying to escape the house and being a little violent.

Now my poor love is away and in a world I can’t enter. She probably content and I’m unhappy. But as you @blackmortimer have said we could never look after them like the home and for that we are grateful.

God bless, Peterxx
 
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Pusskins

Registered User
Jun 6, 2020
215
0
New Zealand
I’ve just talked to a friend of ours who visited to collect some of Bridget’s art supplies. They’re going to a local school so at least they’re being used.

Asking after Bridget she said that I’d done so well looking after her for so long here at home. Strange that some expected me to just give up and it never entered my head to arrange residential care which only happened after I was forced into a corner like a frightened dog.

But, you see, I just don’t feel that way because I never felt it a duty or that I wanted her to leave me prematurely so that the dementia behaviour would stop. Sure it was extremely frustrating and bloody annoying but I cared for her because I love her.

In the end I had no choice but to let her go as she was trying to escape the house and being a little violent.

Now my poor love is away and in a world I can’t enter. She probably content and I’m unhappy. But as you @blackmortimer have said we could never look after them like the home and for that we are grateful.

God bless, Peterxx
That is so true, Peter. I wish I could have kept MH here with me until the bitter end also, but he is doing so much better in the home. I could never have achieved what they have. His swollen legs and cellulitis are gone, they're managing to shower him daily and he is eating good food. I couldn't get him to do any of this at home. I still dream of bringing him home, but I have to accept that is just wishful thinking. On a somewhat brighter note, I have put our property on the market so I can move to the town where he is in care. That way I'll be able to see him every day and possibly volunteer in the rest home myself. Am just hoping we don't go into lockdown again as the NZ government has decided to open a travel bubble with Australia, no quarantining required. Madness, IMHO.
 

Dutchman

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May 26, 2017
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I become more and more concerned about how things will be when Bridget dies. I’m told that this quite normal when we’re suffering from anticipated grief. I see her regularly during the week and I’m encouraged to hold on to the here and now while she’s still with me. But if I feel wretched now what’s it going to be like when I lose her totally?

I’m tending to read others experience of dying and death ( Richard Coles’ partner “ The madness of Grief”) to get some handle on what it would be like but I’m not sure if it provides much relief.

Will I be strong enough at the time to cope with the trauma of losing Bridget is something I just can’t tell, and considering this, in addition to present concerns, anxiety and sadness, just makes matters worse . But I can’t help but think about that awful time when she’ll be slipping away. I mean, how much sadness can just one ordinary man actually cope with? There must be a limited, past which there is no coping. Then what?

Sorry, bit morbid this morning but it’s all part of the mix I go through every day.

peter xx
 

Old Flopsy

Registered User
Sep 12, 2019
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Hi @Dutchman - there's no need to apologise for feeling morbid. It's something I keep thinking about too. I feel as if I'm at halfway house- OH is not here, but he is still alive somewhere, in a separate place from me and I miss him so much- but most of all I miss the person he was.

None of us know who will go first- that's a thought I cling to.

Take care Peter
 

kindred

Registered User
Apr 8, 2018
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I become more and more concerned about how things will be when Bridget dies. I’m told that this quite normal when we’re suffering from anticipated grief. I see her regularly during the week and I’m encouraged to hold on to the here and now while she’s still with me. But if I feel wretched now what’s it going to be like when I lose her totally?

I’m tending to read others experience of dying and death ( Richard Coles’ partner “ The madness of Grief”) to get some handle on what it would be like but I’m not sure if it provides much relief.

Will I be strong enough at the time to cope with the trauma of losing Bridget is something I just can’t tell, and considering this, in addition to present concerns, anxiety and sadness, just makes matters worse . But I can’t help but think about that awful time when she’ll be slipping away. I mean, how much sadness can just one ordinary man actually cope with? There must be a limited, past which there is no coping. Then what?

Sorry, bit morbid this morning but it’s all part of the mix I go through every day.

peter xx
With the usual proviso that everyone is different. I had been at Keith’s bedside for three weeks and his actual dying was a strange kind of relief, he could not have lived like that any more. Then for a while I was just numb as had to do all the financial stuff etc etc. I carried on with my volunteering at the home and all the while expected Keith to be wheeled in as usual. That was hard.
Then I learned that grief was stalking me, ready to jump on me ... and that is how it is today.
The lovely spring sometimes overwhelms me because Keith cannot see it. The pain seems too hard to live with but I carry on. I have always had a plan b in place, if you see what I mean, and that is a comfort.
Of course in lockdown there is a kind of gloaty focus on those of us who live alone as though we must be some terrible social problem. That can be lowering and demeaning.
Most important thing for me is to be useful and find meaning, some kind of meaning. Some reason to go on.
With love to you, kindred
 

blackmortimer

Registered User
Jan 2, 2021
93
0
I become more and more concerned about how things will be when Bridget dies. I’m told that this quite normal when we’re suffering from anticipated grief. I see her regularly during the week and I’m encouraged to hold on to the here and now while she’s still with me. But if I feel wretched now what’s it going to be like when I lose her totally?

I’m tending to read others experience of dying and death ( Richard Coles’ partner “ The madness of Grief”) to get some handle on what it would be like but I’m not sure if it provides much relief.

Will I be strong enough at the time to cope with the trauma of losing Bridget is something I just can’t tell, and considering this, in addition to present concerns, anxiety and sadness, just makes matters worse . But I can’t help but think about that awful time when she’ll be slipping away. I mean, how much sadness can just one ordinary man actually cope with? There must be a limited, past which there is no coping. Then what?

Sorry, bit morbid this morning but it’s all part of the mix I go through every day.

peter xx
I think it's inevitable, Peter. Like you, I think about what it would be like were Margaret to die before me. As I think I may have said before, the present situation is a sort of bereavement but that has no clear end and we all I think tend to say "where there's life, there's hope" although when your loved doesn't seem to recognise you, let alone need you it's all a bit hollow. You will be strong enough to deal with it should Bridget die before you because there are things to be done, people will rally round and there's inevitably a flurry of activity. It's afterwards that we all have to try and be ready for. When all the things that have to be done have been done, when the relatives and friends have all gone home back to their own lives. That's when in my experience bereavement becomes hard. In my life I have seen a lot of bereaved people and learned that everyone deals with it differently, in their own way. Some up sticks, sell the house and move away perhaps nearer to family, others can't bring themselves to change anything. There's no right or wrong way. Everyone grieves in their own way.

All I can say is, only you can decide. Whatever suits you and how you feel is right. There's no one size fits all. May I say I admire you for giving Bridget's art materials to a good cause. Perhaps that's a first step? I wish I could be equally brave.

God bless,
 

Dutchman

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May 26, 2017
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I read many things, either here or in books, speaking to doctors and my counsellor, but I’m still not convinced in my heart and head that I contributed somehow to Bridget’s dementia. I know that I’ve mentioned this before and although time has dulled the edge off of my misery, I still can’t help myself taking some of the blame.

I wish I could be convinced totally that I’m blameless but blame still affects me everyday. And Bridget looks so vulnerable and pitiful sometimes that it’s quite distressing for me to watch her. I just wish I could sweep her up in my arms and never let her go. It wouldn’t make any difference I know and it would probably upset her anyway.

Even writing this gets me going so ill sign off

Peter
 
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Dutchman

Registered User
May 26, 2017
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Well today, I’m told, Bridget will be given her second injection. That doesn’t mean I can go in yet. The home are playing it safe and waiting a week to see possible after effects.

I wait with trepidation at the possibility that I’ll feel awkward and overcome with emotions when I first go in. Little and short to begin with perhaps.
Thank you all for your continued friendship and I hope and pray that those in similar circumstances as me feel comforted as the weeks unfold.
Peterx
 

Old Flopsy

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Sep 12, 2019
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Hi @Dutchman - I too was dreading my first visit- it was indoors yesterday. I feared I would end up in tears- I held it together in the room but lost it as I left the building and drove back to our empty home.

It's tough for all of us. Thinking about you Peter.