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Dementia’s journey

Dutchman

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May 26, 2017
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Devon
I’m doing something now which is really upsetting but it’s a bit like a drug that i can’t stop taking. I’m looking at photos of Bridget that I’ve taken of her over the years. They are all dated . I’ve put them all on my ipad and if i go through them I can pretend that she is near me again as normal, as we were before dementia took her away from me. I wish I hadn’t now but i thought it would be a good thing.

I see her face, the expressions that she made we were together, I remember everyone of the pictures and where we were. She is so normal in them, just enjoying a moment in time and for a little while i can have her back as she was. She’s with me again as a couple and i can feel that I’m not alone anymore for a little while. I can almost hear her talking to me.

Am i going mad? Is it too much to ask that God gives her back to me ? It’s got me crying again so why do I do these things? I thought it would give me some comfort but it hasn’t.

When i see her picture i realise how cruel it is that dementia can do this to a person. But, of course , there is no rhyme or reason why bad things happen to good people. I don’t have any answers and no real way of getting out of this hole.

My Bridget, bless you.

Peter
 

None the Wiser

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Feb 3, 2020
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Ahhhhh @Dutchman ......... its that overwhelming desire to remember how your dear Bridget was before dementia took a hold, and how your relationship was. Precious moments that we don’t realise are precious until they’re long gone. I do think that we are compelled to remind ourselves even when it’s really upsetting to do so. I suspect it’s part of the grieving process.
I couldn’t sleep last night and to while away the hours, and try to find some peace I was searching for pictures and events in my head to remind me that once upon a time my relationship with my husband was happy, ‘normal’ even, and to remember why I chose to marry him!
I do think people live on in our heads, and can bring comfort as well as tears.
You say “I’m not alone any more, for a little while I can almost hear her talking to me”. It’s not enough, it’s not what we want, but it’s something, and that’s why we do it. I’m sure someone who has studied grief and bereavement will come up with a much more eloquent explanation. I just want to say I understand your pain and your need to find your Bridget again. A lifetime of memories can’t be easily erased - thank goodness.
 

Dutchman

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May 26, 2017
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Devon
I’ve woke up this morning sad and numb. I’m struck by the thought of how terribly alone we all are with what we’re going through.

I’ll qualify that....I don’t mean that we’re short on support because on the Forum we all try to help the best we can and for that I say a huge thank you to all my friends I’ve made in my dementia journey. And I have family and a few good friends. But in the moments of agony, regrets and just plain gut twisted grief I find myself on my own. How could it be otherwise.

I’ve decided that I need to concentrate on getting through each emotional episode in the most practical way possible. I went to see Bridget yesterday and as usual I’m a mess of all different feelings. How long should I stay just looking at her through the window, how can I get closer to her, am I doing enough, etc? So what I need is a way to soften those feelings and comfort myself. After all there’s no one in the car with me to put their arm round me.

It’s plain and natural grief I know but I can’t come to terms with it. And there’s a natural process of just getting through each day, a bit of this and and that to fill the day. But instead doing it on my own.
Bless you all, Peter
 

Dutchman

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May 26, 2017
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Devon
I went to see Bridget today. It’s only for moments as it’s through the window, they first need to find her and when they do she really only attentive for a minute or so till she off again walking.

So she’s content I’m told which is something I suppose. So I go back to the car after seeing someone who has forgotten all the life we had and me. What a waste.

I can’t make sense of it, I really can’t. And when I try it just ties me in knots. There’s a barrier there, not only physical but emotionally as well that I’ll never break through even when I’m allowed in eventually. She looks like Bridget my wife but she could well be a stranger and the longer it goes on the more distant we’ll be from each other.

And this is on my mind each day. The problem with retirement is that no one demands my time so there’s no diversion. We were going to have all this time together until dementia killed that.

goodnight and bless you all
Peter
 

Lirene

Registered User
Sep 15, 2019
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Hello again Peter, sometime since I posted and after reading your latest, time has moved on and is still at a standstill for you. How strange the highs and lows of life and the how the Lord moves through our lives in the most mysterious of ways. The lives of my husband and I have been turned upside down, and inside out. We have been wrenched from living our comparatively normal lives to completely separate. He in a nursing home - through absolutely no fault on his part, it’s me who is ill with no chance of full recovery, but praying the cycles of chemotherapy will allow me a few more years.
 
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big l

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Aug 15, 2015
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Oh Peter what a dilemma. Read your post back. You say 'So she'(Bridget)'s contented I'm told which is something I suppose...' Are you lamenting your lack of input to this contentment? Doesn't knowing Bridget is content bring you some relief - or do you feel envious of those providing her care? If it is your lack of input you're lamenting, you have highlighted your own dilemma, Bridget is not able to recognise you as her husband - devastating but do-able if you focus on the knowledge that Bridget's welfare and contentment are being addressed., that should bring you some respite? A few weeks ago you felt a surge of jealousy when a male attendant had his arm round your Bridget. I wonder if that guilt at no longer being involved in Bridget's care any more is what is constantly fueling your grief? Your counselor should help you see that you've done all you could and help you find some solace.
 

Dutchman

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May 26, 2017
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Devon
. Yes, of course I’m happy that Bridge has a good home and that she’s well looked after. I had no choice when it happened back in 2019 and I was lucky that the available home turned out to be a good one.

I’m almost getting used to this being on my own now but that comes with its downside too. Because I’m only see her through the window 3 times a week at most for 5 minutes then I’m just someone who turns up now and again. Couple that with her dementia then there is no chance of any meaningful relationship so the bond has weakened considerably.
So I look at pictures of her and it’s almost like I’m looking at someone I used to know, a different life altogether. This is difficult to explain. It’s like when a loved one moves abroad for a long time with no end date ( say for work) and you keep in touch best you can, but life goes on and you get on with your life but the physical connection has gone. Now add on dementia and a complete forgetting of who you are and you only have your memories to both comfort and upset you, then it’s something like that.

My life was her and me, our lives were one another. And now she’s in a different world that I can’t visit. If I accept this situation and build a life of my own then I’m finally saying that I accept you are gone and I can’t do that.

Grief messes with your mind because it takes you out of normality and dumps you in world you never wanted

Peter
 

Pusskins

Registered User
Jun 6, 2020
210
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New Zealand
. Yes, of course I’m happy that Bridge has a good home and that she’s well looked after. I had no choice when it happened back in 2019 and I was lucky that the available home turned out to be a good one.

I’m almost getting used to this being on my own now but that comes with its downside too. Because I’m only see her through the window 3 times a week at most for 5 minutes then I’m just someone who turns up now and again. Couple that with her dementia then there is no chance of any meaningful relationship so the bond has weakened considerably.
So I look at pictures of her and it’s almost like I’m looking at someone I used to know, a different life altogether. This is difficult to explain. It’s like when a loved one moves abroad for a long time with no end date ( say for work) and you keep in touch best you can, but life goes on and you get on with your life but the physical connection has gone. Now add on dementia and a complete forgetting of who you are and you only have your memories to both comfort and upset you, then it’s something like that.

My life was her and me, our lives were one another. And now she’s in a different world that I can’t visit. If I accept this situation and build a life of my own then I’m finally saying that I accept you are gone and I can’t do that.

Grief messes with your mind because it takes you out of normality and dumps you in world you never wanted

Peter
It is like that for most of us who've had a very close relationship. It's heart breaking, I have good and bad days too, but know that sooner or later I will have to accept it for what it is. I can't change anything however much I wish I could. I'd love to bring MH home and care for him here, but he has probably forgotten the home we once shared and I know I'm not physically or mentally well enough to do it. I'm not interested in forming a new relationship, so will have to try and create a new life on my own however hard that may be.
 

Dutchman

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May 26, 2017
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Devon
Hi there. I wake every day and realise that it’s just me again. Same old routine, and in these days of isolation very difficult to even muster enough enthusiasm to get out of bed.
Its becoming the norm ( how could it be any different?) that I’m getting used to being on my own and Bridget is becoming more and more distant from me.

Ive just returned from a visit to the home and she looks at me and looks but with little sign of any recognition. So I stand there like a fool seeing her through the window hoping that she’ll show me something I can hang onto. But there’s nothing and she returns to looking somewhere else. So I go home and the one way relationship continues.

There is supposedly some comfort in all this. The more I get used to my single life the less of a wrench it will be when she finally goes ( that’s what I’m told anyway but I’m not convinced).

My counsellor today asked what would you say to someone like yourself. It’s impossible really because no one can feel what I feel. They may really appreciate what I’m feeling but never have the actual memories. The closest we can get is our Forum and that’s why we are so important to each other.
Bless you all, Peter
 

Pusskins

Registered User
Jun 6, 2020
210
0
New Zealand
Hi there. I wake every day and realise that it’s just me again. Same old routine, and in these days of isolation very difficult to even muster enough enthusiasm to get out of bed.
Its becoming the norm ( how could it be any different?) that I’m getting used to being on my own and Bridget is becoming more and more distant from me.

Ive just returned from a visit to the home and she looks at me and looks but with little sign of any recognition. So I stand there like a fool seeing her through the window hoping that she’ll show me something I can hang onto. But there’s nothing and she returns to looking somewhere else. So I go home and the one way relationship continues.

There is supposedly some comfort in all this. The more I get used to my single life the less of a wrench it will be when she finally goes ( that’s what I’m told anyway but I’m not convinced).

My counsellor today asked what would you say to someone like yourself. It’s impossible really because no one can feel what I feel. They may really appreciate what I’m feeling but never have the actual memories. The closest we can get is our Forum and that’s why we are so important to each other.
Bless you all, Peter
@Dutchman MH and I had conversations where the demise of either one of us came up. I would always say that if he went anywhere (meaning if he passed away), I was going with him. I'm not 100% convinced that that won't happen if he should pass before I do. Yes, we are told that with all the grief we currently suffer, that when our loved ones do pass on, we will not take it as badly. Perhaps this is true for some, but I'm quite sure I will go completely to pieces. He was and is my life. It has no meaning without him.
 

Dutchman

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May 26, 2017
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73
Devon
Hey ho. I’ve managed to get to another Friday night. The weekends are pretty meaninglessness now i don’t share them with Bridget. Even being retired the weekends promised something different to do.

There’s a dearth of books out there addressing our problems associated with dementia and long goodbyes. Plenty to do with death grief but not anticipate/ ambiguous grief that is equally hard to cope with. My counsellor suggested someone like myself or my friends on the Forum write one but where to start? But I do believe it would incredibly useful but it’s having the skills to do what we have all experienced justice.
I keep searching but nothing has been quite what I’m looking for.
I’ll probably be writing something over the weekend. Take good care and be gentle with your sadness

Peter
 

kindred

Registered User
Apr 8, 2018
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Hey ho. I’ve managed to get to another Friday night. The weekends are pretty meaninglessness now i don’t share them with Bridget. Even being retired the weekends promised something different to do.

There’s a dearth of books out there addressing our problems associated with dementia and long goodbyes. Plenty to do with death grief but not anticipate/ ambiguous grief that is equally hard to cope with. My counsellor suggested someone like myself or my friends on the Forum write one but where to start? But I do believe it would incredibly useful but it’s having the skills to do what we have all experienced justice.
I keep searching but nothing has been quite what I’m looking for.
I’ll probably be writing something over the weekend. Take good care and be gentle with your sadness

Peter
That is very interesting Peter. A while back, I had though to collect my posts about Keith into a book about the best side of nursing home life. I started but the pain was too great. Anyway, if you could do it, a collection of your posts would be so instructive and speak fir themselves. I can’t imagine any better testimony to what we go through.
With love, kindred qq
 

Dutchman

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May 26, 2017
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Devon
Hi there Kindred. Good to hear from you . Just writing this and I get a phone call from the care home.

Bridget’s had another fall. This time she went into someone else’s bedroom, startled the man and she was startled and fell backwards. They’ve checked her and she’s ok. The man is complaining that she shouldn’t go in his bedroom. They’re going to try to deter her from going into other rooms. Good luck with that!!
She likes to wander and meet people. In one way that’s good but it increases the chances of falling.

I was ok today, now I’m not. I worry about her all the time although it’s someone else’s job to look after her now. But it highlights the fact that I can’t personally care and protect her anymore and I’ve handed it to others. And it highlights that she’s in another world and I can’t control anything.
I dread these phone calls. One day it’s going to be really serious and I’m not sure what’ll do.

Bloody dementia

Peter
 

Dutchman

Registered User
May 26, 2017
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Devon
Every day it’s almost like I’m being tested. It relentless this thinking “is today going to be ok or will something happen to upset me “ . A comfort , if there’s one, is that she probably won’t remember she fell.

I sit here and remember the day she left me for good, just got in a car and was taken away. She seemed so trusting that day. I felt such a traitor arranging it all behind her back and now I know I couldn’t have gone on any longer than I did. But it breaks my heart thinking about it. I go for periods when I’m ok and then something like this fall sets me off again and I’m a crying mess. I hate crying. I think I’m over crying and then the memories flood back and off I go again.
My poor Bridget, I can’t be in the home with you, to help you and care for you.
 

Dutchman

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May 26, 2017
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Devon
I’m encouraged to write a journal by my counsellor and those who know me know ive done this off and on since the dementia started in 2017. But I was writing this morning and I couldn’t continue when I remembered the time when Bridget suddenly asked me what my wedding ring meant and I knew then something had shifted. The next morning I wasn’t her husband anymore.

She kept on and on into taking her to our local hospital 4 times looking for me and I was so angry and shouted and cried and she asked the staff where her husband was with me behind her and I got her home and she looked in sheds, rooms , round the roads and cried because she couldn’t find him. I lost it and said never again and I couldn’t appreciate what she was going through and I feel wretched that I couldn’t or wouldn’t comfort her then when she needed comfort the most. I’d had a couple of years bad dementia problems by then but even so I feel I could have done more. Who knows!

In many ways I feel I need to be punished to try and pay the debt. Perhaps my grief and heartache and remorse are my punishment.
Anyway, right or wrong that’s what I’m left with today
 

Pusskins

Registered User
Jun 6, 2020
210
0
New Zealand
It can be very hard to maintain your composure when confronted with the behaviours of the PWD. I'm sure I lost my patience on a daily basis and many on this forum would admit the same. We are only human and caring for a PWD must be one of the hardest things we have ever had to tackle.
 

Platinum

Registered User
Nov 7, 2017
78
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South east
It can be very hard to maintain your composure when confronted with the behaviours of the PWD. I'm sure I lost my patience on a daily basis and many on this forum would admit the same. We are only human and caring for a PWD must be one of the hardest things we have ever had to tackle.
I do so agree. I’ve tried to block off all those horrible incidents where I lost my temper and shouted. We all do it. My partner is now in a nursing home and after 18 months he appears settled. He knows who I am and I speak to him twice a day on the phone and visit once a week. It occurred to me that he appears more settled because he is no longer as anxious about things. He doesn’t go looking for people or places in the same way. I can’t say I’m happy but things are better than they were.
 

Pusskins

Registered User
Jun 6, 2020
210
0
New Zealand
I do so agree. I’ve tried to block off all those horrible incidents where I lost my temper and shouted. We all do it. My partner is now in a nursing home and after 18 months he appears settled. He knows who I am and I speak to him twice a day on the phone and visit once a week. It occurred to me that he appears more settled because he is no longer as anxious about things. He doesn’t go looking for people or places in the same way. I can’t say I’m happy but things are better than they were.
Thank you @Platinum I take a degree of comfort in the fact that the PWD do/does not remember these incidences.
 

Dutchman

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May 26, 2017
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Devon
It’s strange isn’t it that when I was looking after Bridget here at home we had very little contact with the outside world but I didn’t particularly feel lonely. Now I’m on my own I’ve managed to see more people, contact different people even in these times of Covid. But I feel more lonely than ever .

I suppose it’s because I’ve lost my caring role because that’s all I really wanted to do, look after Bridget. I needed very little else.

Its cold and dark and I’m miserable. Not yet 7pm and I might as well go to bed.

Do you feel lost about your future because I know I do. I look into the future even if I’m advised not to and see not very much. How does anyone keep motivated?

The council have agreed full funding for the home so no top up from me required. Just got to wait for the financial assessment now of Bridget’s money. Another hurdle jumped .

stay warm and safe. Love from Peter
 

Jan L

Registered User
Mar 26, 2020
85
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It’s strange isn’t it that when I was looking after Bridget here at home we had very little contact with the outside world but I didn’t particularly feel lonely. Now I’m on my own I’ve managed to see more people, contact different people even in these times of Covid. But I feel more lonely than ever .

I suppose it’s because I’ve lost my caring role because that’s all I really wanted to do, look after Bridget. I needed very little else.

Its cold and dark and I’m miserable. Not yet 7pm and I might as well go to bed.

Do you feel lost about your future because I know I do. I look into the future even if I’m advised not to and see not very much. How does anyone keep motivated?

The council have agreed full funding for the home so no top up from me required. Just got to wait for the financial assessment now of Bridget’s money. Another hurdle jumped .

stay warm and safe. Love from Peter
@Dutchman I do feel for you, its like we are just between a rock and a hard place and there is no peace what ever you do. The situation is bad enough without the pandemic to have to contend with, putting more strain on an already difficult situation. You can only live one day at a time and take comfort from all the loving care you have lovingly given.
Keep well and stay safe.