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Dementia’s journey

Dutchman

Registered User
May 26, 2017
530
Devon
I haven’t written in a while. I ok just.

I’m lurching between being ok to feeling terrifically sad and fed up with all the emotions that my and Bridget's dementia journey has produced.

I went to see my wife this afternoon but there’s not much pleasure for me and Bridget sees me as an opportunity to go outside and ‘’home’. We sit down in her room and I try to hug her but she’s always on edge wanting to go somewhere else. i gently rubbed her hands with hand cream which I hope she enjoyed. She wandered off and I left.

I got home and, I don’t know why, but I felt extra lonely and the strength of loss has hit me hard. I saw various members of the family this weekend who asked about Bridget but I could sense that it was awkward and talk soon came back to what they have been doing. Sort of felt that I should be getting over it and now she’s in a home everything reverts back to normal. Oh my, it couldn’t be further from the truth. I miss her like crazy and I don’t know how to fill the void.

i still feel strongly that she’s there locked away and I’m here able to do what I like, when I like. I’ve tried to take her outside but she makes a bee line for the entrance gate and it’s a struggle to get her back indoors.

And why wouldn’t she do this? She wants her freedom as l would probably. . I’ve asked the carers if they felt she was settled when I’m not there and they mostly say she’s okay. I’ll go again tomorrow to share a dinner with her but I suspect she’ll want me to take her outside. I can’t chance it again as it’s too upsetting for me. Am I a coward and selfish because that’s how I feel.

Bless you all, peter
 
Last edited:

kindred

Registered User
Apr 8, 2018
2,369
I haven’t written in a while. I ok just.

I’m lurching between being ok to feeling terrifically sad and fed up with all the emotions that my and Bridget's dementia journey has produced.

I went to see my wife this afternoon but there’s not much pleasure for me and Bridget sees me as an opportunity to go outside and ‘’home’. We sit down in her room and I try to hug her but she’s always on edge wanting to go somewhere else. i gently rubbed her hands with hand cream which I hope she enjoyed. She wandered off and I left.

I got home and, I don’t know why, but I felt extra lonely and the strength of loss has hit me hard. I saw various members of the family this weekend who asked about Bridget but I could sense that it was awkward and talk soon came back to what they have been doing. Sort of felt that I should be getting over it and now she’s in a home everything reverts back to normal. Oh my, it couldn’t be further from the truth. I miss her like crazy and I don’t know how to fill the void.

i still feel strongly that she’s there locked away and I’m here able to do what I like, when I like. I’ve tried to take her outside but she makes a bee line for the entrance gate and it’s a struggle to get her back indoors.

And why wouldn’t she do this? She wants her freedom as l would probably. . I’ve asked the carers if they felt she was settled when I’m not there and they mostly say she’s okay. I’ll go again tomorrow to share a dinner with her but I suspect she’ll want me to take her outside. I can’t chance it again as it’s too upsetting for me. Am I a coward and selfish because that’s how I feel.

Bless you all, peter
bless you too Peter. It is good to hear from you. Of course you feel so lonely, it is like a physical illness, I know. With you in spirit. Somehow we will get through this.
Gx
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,703
Kent
I got home and, I don’t know why, but I felt extra lonely and the strength of loss has hit me hard
Hello Peter

It makes it even more upsetting if you feel you haven`t been able to make a positive connection with your wife on your visit.

I have had both positive and negative visits and I know it makes a big difference to how I felt when I got home.

No you are not selfish or a coward. You are just a devoted husband devastated by his wife`s dementia.

It`s terribly cold outside. If your wife asks to go out could you ask her to wait until the weather improves?
 

Dutchman

Registered User
May 26, 2017
530
Devon
Just got back from the care home . I dread it as most of you know. I get there and Bridget’s asleep in a chair while a woman is endeavouring to get the residents to do Tai Chi movements.

Bridget wakes up and we go upstairs to her room where I thought we could have peace just holding each other but before long she wants to go downstairs. So far so good.

Then it’s ruined for me because she asks ‘can we go back to your house’ and I say nothing. I leave after about an hour, upset.

The enormity of our situation is brought home to me as I walk through our front door, alone. I have all the luxury of a lovely home and Bridget has to share the environment of this care home. I still have powerful feelings and thoughts of what it would be like to just drive her back here. How much would she recognise? How long before she became anxious again and wanted to escape? Oh to see a big smile if she realised that this was her home too. To put her into the car and drive her away, that look on her face as we would approach the town.

It’s all pipe dreams of course and all these thoughts just increase my sadness.

It’s hopeless really and I feel helpless because there’s nothing I can do to change anything, apart from the way I feel about it. Oh here we go, I’m crying just getting these thoughts out on to the page.

Dementia is evil, unlike any other disease.

bless you all, Peter
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,102
Nottinghamshire
What’s that saying? “Where there’s life there’s hope.”

The trouble is our hearts still hope even when our heads know it’s futile. It is the vilest disease.
 

Hazara8

Registered User
Apr 6, 2015
416
Just got back from the care home . I dread it as most of you know. I get there and Bridget’s asleep in a chair while a woman is endeavouring to get the residents to do Tai Chi movements.

Bridget wakes up and we go upstairs to her room where I thought we could have peace just holding each other but before long she wants to go downstairs. So far so good.

Then it’s ruined for me because she asks ‘can we go back to your house’ and I say nothing. I leave after about an hour, upset.

The enormity of our situation is brought home to me as I walk through our front door, alone. I have all the luxury of a lovely home and Bridget has to share the environment of this care home. I still have powerful feelings and thoughts of what it would be like to just drive her back here. How much would she recognise? How long before she became anxious again and wanted to escape? Oh to see a big smile if she realised that this was her home too. To put her into the car and drive her away, that look on her face as we would approach the town.

It’s all pipe dreams of course and all these thoughts just increase my sadness.

It’s hopeless really and I feel helpless because there’s nothing I can do to change anything, apart from the way I feel about it. Oh here we go, I’m crying just getting these thoughts out on to the page.

Dementia is evil, unlike any other disease.

bless you all, Peter
The beauty of this forum, and l use the word " beauty" carefully but meaningfully - is that contributions from the heart, as are clearly your own, help others who often feel isolated in their personal "nightmare " and with no place to go. Being able to verbalize one's feelings within the framework of a painful and unique situation which belongs to you and you alone, is a good thing and a constructive one. You allow the mindfulness some essential airspace, which is healthy, because "bottling up " feelings and anxieties is potentially destructive and never resolves anything. But, as we learn sometimes with some disillusionment, it can be nigh on impossible to communicate the depth of feelings engendered by the dementia which inhabits those whom we love, to those who have not encountered this all so brutal disease directly, or been subject to the extremes of behaviour which it promotes in the person, who remains the total innocent throughout.
Then we have that cold and inevitable separation when the one we hold dear removes to a Home. The duality in thinking becomes a dilemma. The Home is where the practicable and professional care takes place in a carefully organised regime. Safety and security are in place and if CARE is as it should be, then " best interests " prevail. That is positive. But of course one actually longs to sweep away the one we love beyond words, take them back home and in effect restore the status quo as before, come what may. This, alas, is of course simply a dream. Dementia slowly but surely never let's go of the one it takes possession of and if and when the deterioration results in extreme and traumatic events whilst still at home, then the pain of separation is tenfold. That sudden "emergency respite" ( the term does not convey the reality l assure you) is immense and virtually unbearable. Within perhaps the space of two frenetic hours, the loved one departs the home of some fifty years in a semi comatose state (sedated) and is placed into the only available accommodation (EMI unit) amidst total strangers and an alien environment, and there is absolutely nothing you can do to change it. This scenario you do not want in any shape or form whatsoever. So the separation which takes place as more a transition, albeit painful and most certainly challenging for both the heart and mind, nevertheless has to be seen as positive and benign in essence. Dementia makes the rules, but it cannot deny you that untouchable gift which overrides all things because it is truth -- LOVE.
And when that hollow space confronts you in an empty house, whether the vacant chair, or the framed picture on the sideboard or the familiar rubber gloves still hanging up in the kitchen.... and you wish to cry, then do so and without guilt or an ounce of restraint. Never deny feelings, perhaps try and observe them and consider them. Consider what is good in terms of care and protection and welfare. That being in place is not a "dream" but a fact. Despite physical separation, the genuine heartache and frustration which accompanies that, it is the reality because it has to be so. One lives with that as a " norm" because to fight it simply exacerbates the anguish, the helplessness.
But the really rather wonderful thing about all of this, is that the truly "untouchable" remains above everything, intact. The moments - the many moments of laughter and pain, the depth of friendship embedded in that relationship, a life shared in a world of hopes and disappointments, of uncertainty, but also joy - all of that can never be harmed nor ever changed. And the "mask " of dementia, whilst very challenging in its presentation, the manner in which it seems to deny who you are or what has been as if somehow all of that never existed, is just that, a "mask", because that LOVE we speak of is not false, it is extraordinarily real and when this "dementia journey" draws to a close, that LOVE continues, because you can neither grasp hold of it, inhibit nor contain it, nor harm it.

Each one of us takes a journey upon this rather extraordinary Earth, a journey which ends one day and we trust without either violence nor undue pain. Yet Love has no beginning nor end and goes beyond our comprehension. It embraces all things and remains untouchable. If we are very lucky, it shows itself through our tears, our laughter and our humanity .

There is profound comfort in knowing that.
 

Dutchman

Registered User
May 26, 2017
530
Devon
Oh my, what a long and considered reply. Many , many thanks for taking the time to read my post and give such good advice.

I’ll need to reread it again to get all the benefits from your thoughts. Many thanks. Peter
 

Hazara8

Registered User
Apr 6, 2015
416
Oh my, what a long and considered reply. Many , many thanks for taking the time to read my post and give such good advice.

I’ll need to reread it again to get all the benefits from your thoughts. Many thanks. Peter
My very warmest wishes, Peter. And please be assured that YOUR words are of considerable value because they offer a "reality" to this forum and not theory nor opinion, but as from the heart. So thanking you.
 

Dutchman

Registered User
May 26, 2017
530
Devon
On the 23 August last year my darling Bridget was taken from me to the care home. Before she went, very early that morning and with the nurses keeping a watch on Bridget so she couldn’t escape, I went for a walk. I was hurting so much as I walked across our bridge. I’d had enough.
Today as I walked over the same bridge it hit me that when she was finally taken by the care home manager in her car I didn’t even kiss her goodbye. I was confused and at the same time numb but thankful that the madness had stopped. That’s when reality also hit me that Bridget was not coming home, I’d lost my wife and I’d been instrumental in her departure.

All of the preparation and planning for this was done behind her back. I even had to hide in the shed to make phone calls.
It’s depressing that when you think you’ve made progress in grieving something triggers a strong emotion that knocks you right back. The high street was dark and quiet and I’m crying for my Bridget as I walked up it’s length.
Now she’s gone it’s almost like I’m an invader in my own home, that I’m not really allowed to be here any more, that it’s not what I deserve after delivering to a care home,. Our home, after all, was for us both, occupied in better days with love and companionship.

Hazara8, thanks for keeping an eye on my posts. It’s a comfort to know that all through all of this we have people who understand absolutely the dark places we find ourselves in.

bless you ,Peter
 

Hazara8

Registered User
Apr 6, 2015
416
On the 23 August last year my darling Bridget was taken from me to the care home. Before she went, very early that morning and with the nurses keeping a watch on Bridget so she couldn’t escape, I went for a walk. I was hurting so much as I walked across our bridge. I’d had enough.
Today as I walked over the same bridge it hit me that when she was finally taken by the care home manager in her car I didn’t even kiss her goodbye. I was confused and at the same time numb but thankful that the madness had stopped. That’s when reality also hit me that Bridget was not coming home, I’d lost my wife and I’d been instrumental in her departure.

All of the preparation and planning for this was done behind her back. I even had to hide in the shed to make phone calls.
It’s depressing that when you think you’ve made progress in grieving something triggers a strong emotion that knocks you right back. The high street was dark and quiet and I’m crying for my Bridget as I walked up it’s length.
Now she’s gone it’s almost like I’m an invader in my own home, that I’m not really allowed to be here any more, that it’s not what I deserve after delivering to a care home,. Our home, after all, was for us both, occupied in better days with love and companionship.

Hazara8, thanks for keeping an eye on my posts. It’s a comfort to know that all through all of this we have people who understand absolutely the dark places we find ourselves in.

bless you ,Peter
Peter, it is very difficult to accept in a way which actually satisfies that all you did in respect of addressing the necessity of moving Bridget ( if l may) to the Care Home, was both unavoidable and actually in keeping with your quite obvious deep and loving relationship for that very person. This term " best interests " falls rather easily off the tongue, but it has very real intent and meaning because it focuses on the one who is vulnerable and unable to choose what is best for them. Otherwise things can become intolerable and ultimately tragic if left to their own devices. I recall many years ago, before dementia was really being understood, a lady living with her mother. Gradually the mother's dementia worsened and the daughter was subjected to aggressive behaviour mixed with spasmodic "recognition " and relative calm. But then, there came a point in which the mother did not recognise her daughter at all and wished her simply to be not there. That was a harsh outcome which was really as a result of things deteriorating way beyond the point when
"care " should have been implemented. The daughter was made to feel like an intruder in her own home. The point l am making is really that your actions removed the possibility of deterioration taking place whilst still at home, whereby quite traumatic happenings occur and feelings are subjected to intolerable demands and heartache, which lead ultimately to the "emergency " admission into a Care facility after all
-- but in a state of profound despair. Of course only you and you alone know just how you feel and that applies to us all. But neither you nor your dear wife invited dementia into your lives and this is the fundamental element in all of this. The one living with dementia cannot challenge it nor deny it, just live with it, as it were unknowingly. But you CAN do something which is positive and ultimately an expression of the profound love and affection you have for Bridget. Yes, it is extremely challenging and it tugs relentlessly at the heart, but you CARE and in so doing you ACT and provide for the " best interests " available because you have no option, other than potential heartbreak compounded by an inevitable acceptance of the " emergency " move into Care referred to above. This transition of a " relationship" embraces both parties. In so doing it has to become a norm because it has become the "new" relationship. A home is basically bricks and mortar and the " memories" which abound within it nevertheless are NOT living things. But those two people ARE and despite the scourge of dementia, that must be the all abiding focus in all of this, moment to moment. Your posts shed light on these " moments " in a truly meaningful way because you open up your heart to the forum and in so doing can but only enhance its purpose. For there will be many who coming upon your story, will suddenly realise that they are not alone at all, nor crying in a wilderness of despair. That has to be immensely worthwhile and greatly appreciated.
 

Dutchman

Registered User
May 26, 2017
530
Devon
If I look back over the last 6 months I’ll have this impression that I spent a lot of time in bed. Today I planned to see Bridget this morning but just haven’t got the motivation so I’ll go this afternoon. I thought that my excuse ( if I needed one) is that ‘’come on Peter, you’ve lost your wife to dementia, I’ve got to have treatment soon for prostate cancer, and I’m doing all this on my own !’’ So I’ve cut myself some slack and am being kind to myself ( whatever that means) . Normally we’d be out there doing stuff nice and early but my world isn’t normal any more.

hazara8 , you are absolutely correct in your advice that if I had left it longer I would have found myself in a position whereby Bridget would have needed to be transferred away quickly, sedated. It was bad enough as it was but at least she’s in a home of my choosing, not far away and run by caring, compassionate people.

Ive got through the first 6 months so we plod on, emotions up and down , justifying our actions to ourselves, getting the professionals and kind forum posters to reassure us we’re doing okay.

I’m writing this in bed, it’s warm and safe and I just hope that day by day it’ll change.

Bless you, Peter
 

Hazara8

Registered User
Apr 6, 2015
416
If I look back over the last 6 months I’ll have this impression that I spent a lot of time in bed. Today I planned to see Bridget this morning but just haven’t got the motivation so I’ll go this afternoon. I thought that my excuse ( if I needed one) is that ‘’come on Peter, you’ve lost your wife to dementia, I’ve got to have treatment soon for prostate cancer, and I’m doing all this on my own !’’ So I’ve cut myself some slack and am being kind to myself ( whatever that means) . Normally we’d be out there doing stuff nice and early but my world isn’t normal any more.

hazara8 , you are absolutely correct in your advice that if I had left it longer I would have found myself in a position whereby Bridget would have needed to be transferred away quickly, sedated. It was bad enough as it was but at least she’s in a home of my choosing, not far away and run by caring, compassionate people.

Ive got through the first 6 months so we plod on, emotions up and down , justifying our actions to ourselves, getting the professionals and kind forum posters to reassure us we’re doing okay.

I’m writing this in bed, it’s warm and safe and I just hope that day by day it’ll change.

Bless you, Peter
It WILL change, Peter. In fact each day is in a permanent state of change. If you wish to " lie in" then do so. You say the Home is " of my choosing, not far away and run by caring, compassionate people". Whilst Bridget might not be under the same roof, she is safe and cared for and that is a major plus point. We hear of two hour each way journeys in this respect, or even greater distances and anxieties about Homes which do not tick the appropriate boxes and so on. We always count our blessings, whilst knowing that our own situation is OURS and nobody else's and has to be addressed accordingly by US. There is little to commend dementia, other than the fact that the loss of short term or memory as a whole, means that the one living with it does not register " absence" as we do. So that time when you are about to depart the Home with the angst of what will the response be, it can turn out to be without event nor upset.
I used to time my departures with meal times, which were a distraction anyway. When folk have capacity then that can be tricky and requires a different approach. I must say that my observations in the Home l frequent as a volunteer, confirm this. Often happy smiling residents living " in the moment " and NOT asking about their kith and kin. That must only be a good thing. Whilst not an easy resolution to this whole regime, the day to day approach is perhaps wise, rather than too much "thinking about" the " what ifs" . Because the actual fact of the matter lies in the fundamental truth; simply being, that there is nothing else but the " here and now" whether we like it or not?
So keep on with your " diary of events" Peter. It not only contributes so meaningfully to the forum, but it has always been beneficial to, as it were, put pen to paper in respect of our thoughts and actions. Therapeutic in fact. And as from the heart, wholly beneficial. With warmest wishes.
 

Yardman

Registered User
Dec 14, 2019
21
Hu!lo, I am going through a daily emotional upset.The circumstances briefly are that having transferred my wife to a Care/ Nursing Home direct from hospital after recovering from an infection. This re-occurred in the Home. My
Wife of 50 years has consistently asked to come home. Today she was even more determined, knowing that I couldn't now manage all her Care as I have done for 3 years basically without family support. My wife has got a rare form of FTL
I am wrestling with the idea of her coming home with a Care Package in place.
If there is a determination there and she is unhappy how do you deflect that?
I thought that placing my wife in a Home would decrease my stress and worry. To see her every day distressed each day is soul destroying.
At this stage we are self funded paying top dollar. I question some aspects of her Care and safety. Any views would be appreciated. Yardman
 

Dutchman

Registered User
May 26, 2017
530
Devon
Confusing and upsetting day today. My wife was exhibiting the behaviour that she had when here at home.

It all started ok. We relaxed in her room and she was calm and quiet. Then we went back downstairs and she was extremely agitated, not sitting down, wanting to leave and holding on to me all the time. She became very vocal and raised her voice. After a while I realised there was no point me being there but was unable to find a point where I could leave.

So the manager managed to distract her but not before Bridget had banged the glass of the outside door shouting to me to come back. It feels like I've shoved her away and she’s now locked up, contained in the care home.

it’s no wonder I’m a mess sometimes, that bed seems a safe place, I’m not sleeping properly and I’m reluctant to visit the home afraid of what’s it going to be like.

As I went indoors back home I felt I've let her down, that I don’t deserve this home when Bridget is unable to enjoy it as well. I’m so tired of all this as it’s constantly on my mind .

peter
 

Dutchman

Registered User
May 26, 2017
530
Devon
I’ve spoken to the home this morning and reassured that Bridget is ok and quiet at the moment sitting in the office. Thing is, I’m getting the feeling that I’m becoming more distant from her which , I suppose, is going to happen given the separation and her different relationship to me now.
She won’t hug me now, she is more concerned with getting somewhere else so she’s constantly on the move.
I’m ashamed to say that my visiting is becoming a chore and duty rather than something I look forward to. I cannot fight this inevitable change and it makes me as sad as hell. I have my world and Bridget has hers and I find it incredibly difficult to come to terms with this.

Bless you all, Pete
 

Dutchman

Registered User
May 26, 2017
530
Devon
I’ve just had the cry of all cries . It came at me from nowhere. Bridget has been visited by my son and daughter ( gave me a break) and they both said that Bridget waved them off when they departed.
I’m some respects one could say that it’s good she’s wasn’t anxious when they left. That she seems more settled. But to me it’s another sign that she is lost to me now as she settles into her new world. And when she finally doesn’t even recognise me as her friend then what do I do? My darling wife who used to love me and support me is gone.
But there’s no way I can change anything and I’m only crying to an empty house with no one there to comfort me, just the memories of our normal life of 25 years before dementia struck.

i feel so sorry for her when I look at the desolation in her eyes. She’s never cried all the time dementia has had a hold on her and I wonder how, if at all , she feels sad inside. Damn dementia. Cruel don’t come close.

Just had to get it down for some clarity
Peter
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,703
Kent
I will never understand how people with dementia show different sides of themselves to different people. Our son rarely saw the most challenging behaviours which were commonplace to me.

It`s not surprising some friends and family can`t believe our accounts.

It`s so difficult for you Peter @Dutchman. I really understand your reluctance to visit makes it even more heartbreaking for you.
 

Banjomansmate

Registered User
Jan 13, 2019
1,619
Dorset
I think you have to remember, Peter, that Brigid might well have been “moving away from you” in exactly the same way if she was still at home with you now. As the disease progresses everything is constantly changing and none of us know what is going to happen next, so please don’t put all blame for change on your necessary decisions. She might well have been even more unhappy at home without the 24 hour support now given by the Care Home staff.
I considered it a “good” visit to the Care Home if The Banjoman just held my hand sometimes.
 

Dutchman

Registered User
May 26, 2017
530
Devon
Today is Bridget’s birthday and I went in with some flowers and her cards. She was pleased to see me and we spent some time just holding hands in her room. We don’t stay long as she gets anxious.

As we walked downstairs the manager says ‘Happy birthday Bridget’ then to me she says ‘are you taking her out today’ when in the past taking her out has upset me because she wants to go in the direction of where our house is. Yes, she still remembers.

so what am I supposed to do? Do I take a chance again? Am I selfish, a coward for not making the effort? I’d love to take her to the local cafe but I dread any consequenches.

oh dear it’s so emotionally messed up.

peter
 

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