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Dementia’s journey

blackmortimer

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Jan 2, 2021
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Anyway, hope that helps. Beautiful day out there today. Comfy slippers coming for Bridget today so I’ll deliver those later. She gave me a long wave yesterday when she saw me through the window. Both makes me happy and sad.

A scrap of comfort is that there is no way I could handle her now any better than the home. They have everything she requires and are on top of all her wants and needs. Who knows what her condition would have been like if she’d had stayed here for any longer. Probably hospital for her and maybe me as well.

God bless you all and pray today finds some peace for you, Peter
I've come to the same conclusion, Peter. I think I've come to terms with the present and that Margaret is in a place where she's being looked after batter than I ever could. I rang them yesterday to see how she was and they told me that she was on good form and interacting well with everyone. They said that when she's like that she can be the best of company and good company. At other times, when she's in a 'grumpy' mood they know to keep their distance. I don't know whether it's the same with all forms of dementia, but with lewy body certainly it seems that mood swings are part of the disease making care difficult. The thing about the nursing home is that they've seen it all before and can deal with it without taking it personally.

So., I've come to terms with the present. As to the past, like you I'm subject to flashbacks so thanks for the protocol, I'll give it a go. I must say I can empathise with your reaction to finding a recording of Bridget's voice. I've not had anything quite so shattering, but from time to time I come across pieces of writing that Margaret has done over the years and they tend to break me up - I remember her reading them to me, asking me to edit them, print them off and so on. Her writing is so good, so vivid often hilariously funny, sometimes deeply thoughtful and profound. It's the very core of her and reminds me why I love her and how things were before dementia and her journey into that distant land where I can't go. At least I can talk about it all, so that must be something, I suppose.

Thabks to you and all the others on this site who are helping me through it all.

God bless
 

None the Wiser

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Feb 3, 2020
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Thank you for the Protocol @Dutchman. It could be really helpful..
I saw my husband for the first time on Thursday after he went into care just over a week ago. I was dreading it, but he was calm and smiled when I told him who I was. He managed to sit with me briefly. He’s displaying many of the behaviours he was at home, but because he has a team around him its being well managed. He wasn’t distressed about his new surroundings, so I came away relieved that he isn’t desperately unhappy.
Its odd though as I thought I’d feel more relaxed and less stressed, but I don’t. I feel overwhelming sadness. Our relationship changed as the dementia took hold and he became totally dependent on me for all his care, and as communication became more difficult. The relationship has completely altered yet again by this move into care, and as he doesn’t know me, it’s hard to know quite what there is left. I wonder how its possible to adapt to this change.
 

Dutchman

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May 26, 2017
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Hello @None the Wiser. I wish I could be there with you with these early days of our loved ones in a home. What we have is a mixture of shock and misery that they are still with us but not really and that’s so difficult to get our head round.

it’s no good me telling you that a year down the line you may be more settled because at this stage you can’t believe that. BUT it will get better and I find some peace in realising that I’m still alive and just surviving most days. Every day throws up another upset, some big some not so, but still my grief always lurks around like someone in the shadows.

Ive come to the conclusion that whatever I feel at any time anywhere and with anyone is OK and don’t give a damn what others think of me. I often say to my counsellor that this must be becoming boring. Peter, she says, never ever underestimate the shock you’ve had and will keep having and treat yourself always with the utmost kindness. So please do the same @None the Wiser.
Lots of love. Peter
 

Old Flopsy

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Sep 12, 2019
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Hi @blackmortimer ,@None the Wiser &@Dutchman. You have all written such caring posts and I have received comfort from your words. @None the Wiser I am so relieved to hear your experience of your first visit- like you I can't make sense of my current feelings and live one day at a time. Thinking of you all as we travel this journey together.
 

blackmortimer

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Jan 2, 2021
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Hi @blackmortimer ,@None the Wiser &@Dutchman. You have all written such caring posts and I have received comfort from your words. @None the Wiser I am so relieved to hear your experience of your first visit- like you I can't make sense of my current feelings and live one day at a time. Thinking of you all as we travel this journey together.
Good morning, @Old Flopsy @None the Wiser @Dutchman. I've not yet visited Margaret under the new close contact rules partly because I want to facilitate my daughter and son seeing her which uses up the 2 allowed, but partly I have to admit that I'm scared of what I might encounter. So I use the children to some extent as canaries in the coal mine. They understand this and their concern for me is palpable - also when they visit Margaret they can come on to me and let me know how things are. Last time I visited under the old rules - separated by a perspex screen Margaret simply didn't recognise me and I have not ventured again. Sooner or later when more than 2 close visitors are allowed I shall have to steel myself and face up to the task but I'm not really ready yet. Ironically one of Margaret's favourite quotes was "mankind cannot bear too much reality" or something similar from T.S.Eliot and it sums me up perfectly.

One of you mentioned the shock of the situation. My daughter, who has a background in psychology, says that what we've all suffered is a form of post traumatic stress disorder and having done a bit of research I think she's right (she usually is!). For myself I find more and more that I want to go back to the "good days" of pre-dementia and spend time there. I suppose to quote (this time from Frank Sinatra) "anything to see me through the night".

God bless
 

Old Flopsy

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Sep 12, 2019
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@blackmortimer - maybe your children could make a short video of their visit to show to you. I did this to show to my son, who is reluctant to visit my OH until he has had his jabs, and it prepares him for the changes which will inevitably shock him when he does visit. I know I too was scared and not knowing what response you will get is so disconcerting. Thinking of you.
 

None the Wiser

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Feb 3, 2020
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Hello @blackmortimer, I really understand your reluctance to go to see Margaret. It really is so very difficult with COVID restrictions. It’s all so unnatural. I was very nervous and although we didn’t have a glass panel between us I had to wear a plastic apron, gloves and a mask. I was surprised my husband remained relatively calm, and that there was a flicker of recognition! We also had a carer with us the whole time! Very odd! I’m booked again for Tuesday and asked if the weather is good whether I could take him in the garden. I would have thought this would be ‘safer’ than an indoor space, but was told that the garden is for residents only. I despair!
im glad you can recall life pre dementia and get some comfort from that. At the moment I can recall very little of when my husband was ‘normal’. I’m not sure why? Take care everyone. So good to talk to people who understand. Thank you for being there.
 

None the Wiser

Registered User
Feb 3, 2020
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Hello @None the Wiser. I wish I could be there with you with these early days of our loved ones in a home. What we have is a mixture of shock and misery that they are still with us but not really and that’s so difficult to get our head round.

it’s no good me telling you that a year down the line you may be more settled because at this stage you can’t believe that. BUT it will get better and I find some peace in realising that I’m still alive and just surviving most days. Every day throws up another upset, some big some not so, but still my grief always lurks around like someone in the shadows.

Ive come to the conclusion that whatever I feel at any time anywhere and with anyone is OK and don’t give a damn what others think of me. I often say to my counsellor that this must be becoming boring. Peter, she says, never ever underestimate the shock you’ve had and will keep having and treat yourself always with the utmost kindness. So please do the same @None the Wiser.
Lots of love. Peter
Thanks for this @Dutchman. You’re right it is a mixture of shock, ‘sadness’ for me rather than misery, and I think, a feeling of being in limbo (not really needed any more). Even the grief isn’t typical grief that people experience when someone close dies. Thank you for your love. I send mine to you too in the hope it gives some comfort even though we don’t know each other.
Take care.
 

blackmortimer

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Jan 2, 2021
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@blackmortimer - maybe your children could make a short video of their visit to show to you. I did this to show to my son, who is reluctant to visit my OH until he has had his jabs, and it prepares him for the changes which will inevitably shock him when he does visit. I know I too was scared and not knowing what response you will get is so disconcerting. Thinking of you.
What a good idea! Both children have whizzy phones which can take video so I'll moot the idea with them. I have to confess I'm a bit of a coward in that when I visited while she was in hospital Margaret could become very difficult and leave me in a very depressed state, whilst other times it would be the reverse and she would be something like her old self and welcoming me. All part of the disease, I know, but very difficult to take, I'll see how your idea works out. Thanks gain.

God bless,
 

blackmortimer

Registered User
Jan 2, 2021
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Hello @blackmortimer, I really understand your reluctance to go to see Margaret. It really is so very difficult with COVID restrictions. It’s all so unnatural. I was very nervous and although we didn’t have a glass panel between us I had to wear a plastic apron, gloves and a mask. I was surprised my husband remained relatively calm, and that there was a flicker of recognition! We also had a carer with us the whole time! Very odd! I’m booked again for Tuesday and asked if the weather is good whether I could take him in the garden. I would have thought this would be ‘safer’ than an indoor space, but was told that the garden is for residents only. I despair!
im glad you can recall life pre dementia and get some comfort from that. At the moment I can recall very little of when my husband was ‘normal’. I’m not sure why? Take care everyone. So good to talk to people who understand. Thank you for being there.
I think the homes are all in a state of hyper-precaution (if there's such a word) because of the problems they hd with Covid in the early stages. I suppose they don't want to get any blame so play strictly by the rules. Damned if they do, damned if they don't sort of situation.

In an effort to get away from the wall to wall coverage of events in Windsor this afternoon, I took the dog to a nearby country park which I hadn't visited for quite a long time. We used to go there pre-dementia quite a lot. Although they'd made quite a few changes everything was recallable from those days. We had quite a long walk as the sun was out and it wasn't quite as cold as earlier. I was relieved to find that I could allow memories of all sorts to well up without being overcome with sadness and bursting into tears - which would have happened not very long ago. I even located the very spot where many years ago we saw a mother toad hopping along with a tiny baby toad on her back and found the memory so comforting.

I think you probably have to let the past gradually come back and plan to confront it rather than have it ambush you, as @Dutchman was saying recently, by coming across something out of the blue. I don't know. I'm no expert so I can only pass on what seems to be working for me.

God bless
 

None the Wiser

Registered User
Feb 3, 2020
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I love your description of your visit to the country park this afternoon. I could imagine you both discovering the toads. So good to be able to recall those happy times @blackmortimer.
I understand what you mean by ‘let the past just come back’. You have given me some comfort and hope that if I stop searching then maybe it’ll happen. Thank you, I can see the wisdom in that.
 

Dutchman

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May 26, 2017
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Are you like me, feeling the same today perhaps?

I woke up fine and planned a whole host of stuff to do. After all it’s fine weather and everyone tells me it lifts our spirits. So I sit here and it’s quiet and I want to do nothing but brood on being alone. I can’t help it. I’m rooted to the chair and feeling very lethargic.

I had a phone call from the home telling me one of the residents had smacked Bridget but Bridget’s ok. They’re like children sometimes with their moods. Now Bridget’s having tea and toast
I suppose I’m allowed a lethargic time when there’s no one here to encourage me to do otherwise. It’s enough sometimes just to write here on our Forum. Grief wipes me out and forces me to just be still. Going to make myself a drink now so at least I’m moving about!
Peter
 

Pusskins

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Jun 6, 2020
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New Zealand
Are you like me, feeling the same today perhaps?

I woke up fine and planned a whole host of stuff to do. After all it’s fine weather and everyone tells me it lifts our spirits. So I sit here and it’s quiet and I want to do nothing but brood on being alone. I can’t help it. I’m rooted to the chair and feeling very lethargic.

I had a phone call from the home telling me one of the residents had smacked Bridget but Bridget’s ok. They’re like children sometimes with their moods. Now Bridget’s having tea and toast
I suppose I’m allowed a lethargic time when there’s no one here to encourage me to do otherwise. It’s enough sometimes just to write here on our Forum. Grief wipes me out and forces me to just be still. Going to make myself a drink now so at least I’m moving about!
Peter
The grief is killing me. No opportunity to correct past misunderstandings and set things right, just grief and pain, grief and pain and more grief. Struggling to exist being separated from MH, how to cope without him. Can't see me ever enjoying life ever again. He WAS my life and now he's been taken from me.
 
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Dutchman

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May 26, 2017
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I’m with you @Pusskins, right now. I’m satisfied that Bridget can no longer remember anything about the wrongs and arguments while she was here. Its a very small comfort.
You’ve been through so much and, like us all, every bit of grief you’re feeling is extremely personal. I’d like to offer one thought, and that is, when things get too much and you feel overwhelmed by upset, try to imagine that I’m just here with you, just sitting with you, no need to say anything, just here.

best wishes. Peter
 

Lone Wolf

Registered User
Sep 20, 2020
131
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The real pandemic is all the unrecognised, unsupported and traumatised carers battling against the effects of the unrelenting stages of the dementia journey.
 

blackmortimer

Registered User
Jan 2, 2021
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The real pandemic is all the unrecognised, unsupported and traumatised carers battling against the effects of the unrelenting stages of the dementia journey.
Just to be little upbeat for a change, we've had one of those outrageously beautiful days that sometimes Mother Nature puts on for us here in the east. John Betjeman's "wide East Anglian sky" has been an unbelievable shade of blue with little bits and pieces of fluffy white cloud, the sun bright and making the thatched cottage windows sparkle, The village green neatly mown and sprinkled with spring flowers, the ducks dabbling in the village pond. It really was a case of "Oh to be on England..."! Such days truly feed the soul. I just wish you could have been with me to drink it all in. Needed to share it.

God bless,
 

None the Wiser

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Feb 3, 2020
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“No opportunity to correct past misunderstandings and set things right, just grief and pain, grief and pain and more grief.”. I‘m really with you here @Pusskins.
@blackmortimer it has been a beautiful day here too. I had a lovely walk in the woods on the South Downs which is just up the road from where I live. Such strong signs of spring now, and lots of people out with their dogs. When I pass someone on their own now I often wonder if they might be going through a similar experience to me.
 

Dutchman

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May 26, 2017
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I’m getting a haircut today after around 6 months so I’m quite excited about have much shorter hair. I haven’t gone bald like many guys I know. The last time it was this long was when I was 20 years old. Pathetic isn’t it that this could brighten my day!

I’ve checked on Bridget and she having her tea and biscuits and generally ok. I’ll see her later. I wish I had a pet to talk to. We used to have two cats who I talked to all the time and they were very friendly and wanted cuddling all the time. Simple things I miss terribly. Now that lockdown is easing perhaps there’ll be more opportunities to get one ( or a dog) - who knows?

hope you all have a peaceful day, one without too much upset

Peter
 

None the Wiser

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Feb 3, 2020
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Hello @Dutchman, its amazing how a hair cut can make a difference to how we feel about ourselves!
We have 3 cats that have been really very unsettled at the changes in my husband, and now his recent disappearance! They were very attached to him. It is lovely to have them around. They are a bit of company.
Beautiful spring sunshine here.
 

Dutchman

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May 26, 2017
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I went to have my second jab today. All ok and I felt neutral about Bridget and me and dementia loss and then BANG, as I was walking home it hit me. I’ve just got back indoors and I’m waiting for an Admiral Nurse to phone back. I’m hurting bad.

I just keep going round and round with thoughts of - why did she want to escape the house - did I do enough to make her want to stay - I failed to keep my woman safe from dementia. And the big one is - when I was selfish during our time together did this somehow contribute to her wanting to leave me and our home. In my mind I cannot be convinced that I’m not at fault somehow.

I’m writing to those who know all these feelings which are so unique to dementia and which impact on our lives all the time. All I want to do right now is just lay on the sofa and think and try to work all this out. Not easy on our own.
Peter