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Dementia’s journey

Dutchman

Registered User
May 26, 2017
616
Devon
Hello Kindred and Northumbrian-k.

I do seem like a hopeless case don’t I.

Trouble is I can’t live with her and her dementia and I hate living without her. I think writing a letter is a wonderful idea.

Everyone is different and we all handle this dreadful situation differently and as best we can. I suppose I’m doing my best but not handling it at all well.

i want to write more but not now but what I would like to say, to you both, is that I’m so very grateful of your support in these mixed up, extremely hard to cope with times.

The same goes for all the other wonderful posters who have supported me over the past months

keep well, keep safe

God bless.
peter
 

Dutchman

Registered User
May 26, 2017
616
Devon
I’m sitting in the car in the car park. Just done a quick shop at Morrison . Can’t quite fancy going home
just yet.

I went to the care home today to drop off some pull ups because I believe only good ones are good enough for Bridget. She came to the window and we mouthed kisses together and I said I love you and miss you and she wanted me to come inside and of course I can’t. She was lead away by the carer.

I don’t expect replies to this but I have to get it down out of my head. I’ve had a light bulb moment in that I’ve realised I’m still in denial and shock after 8 months of separation. I’m not coming to terms with the fact that Bridget is not ever coming home and that I will be on my own, for probably the rest of my life.

Its a bit like living in a alternative reality. I’m unable to do much for her now whereas before we did everything together. And I miss her
so much all the time and, yes it’s like the grief of bereavement, only she’s still there to remind me of this terrible separation.

My only consultation, which I have to cling to, is that if she was at home now matters would be impossible to manage.

I harbour thoughts sometimes of this COVD19 getting me and putting an end to this misery.
I’m now on a course of hormone tablets pre prostate surgery which possibly will make me more tired, more emotional and anxious. So I expect I’ll be back on the forum soon.
Bless those who read and answer my posts

Peter xx
 

kindred

Registered User
Apr 8, 2018
2,414
I’m sitting in the car in the car park. Just done a quick shop at Morrison . Can’t quite fancy going home
just yet.

I went to the care home today to drop off some pull ups because I believe only good ones are good enough for Bridget. She came to the window and we mouthed kisses together and I said I love you and miss you and she wanted me to come inside and of course I can’t. She was lead away by the carer.

I don’t expect replies to this but I have to get it down out of my head. I’ve had a light bulb moment in that I’ve realised I’m still in denial and shock after 8 months of separation. I’m not coming to terms with the fact that Bridget is not ever coming home and that I will be on my own, for probably the rest of my life.

Its a bit like living in a alternative reality. I’m unable to do much for her now whereas before we did everything together. And I miss her
so much all the time and, yes it’s like the grief of bereavement, only she’s still there to remind me of this terrible separation.

My only consultation, which I have to cling to, is that if she was at home now matters would be impossible to manage.

I harbour thoughts sometimes of this COVD19 getting me and putting an end to this misery.
I’m now on a course of hormone tablets pre prostate surgery which possibly will make me more tired, more emotional and anxious. So I expect I’ll be back on the forum soon.
Bless those who read and answer my posts

Peter xx
 

kindred

Registered User
Apr 8, 2018
2,414
All fellow feeling Peter. It is like an alternate reality, I feel shocked and dazed every day. You have moments of love when you blew kisses and then you have to come away. It’s torment. I feel I’m walking along a high cliff and not looking down into the alone forever ... I do so sympathise, you know I do.
The only way I get through is remembering that Keith once said that the greatest gift I gave to him was my warm and loving presence. I try to go on being that to people. For a while I felt I was just waiting to die, like you and the virus thought.
all my sympathy Peter, you are such a good man.
With love, Kindred.
 

Dutchman

Registered User
May 26, 2017
616
Devon
Hi there .

I went to the home this morning with some flowers and asked that Bridget be brought to the window. The moment she saw me she smiled and blew kisses. I know said this before.

i said I had to go, couldn’t go inside. She got led away like a little lamb, her determination and sparkle all gone replaced with compliance. She is vacant and walks the corridor most of the time I’m told.

I get upset over many things now. The lost look on her face, our separation, not being able to hold her and feeling I can’t protect her. I want so much to look after her, she was and is my life after all. Oh, and I’m lonely.

I love her so much but even before lockdown l felt helpless. And now it’s worse of course. Many, many of us are experiencing similar feelings and I feel privileged that I can share my emotions openly because if I didn’t have place to do this i think I’d go mad.

Dementia is like nothing else. It changes everything and will never let the wound get healed. I get to be feeling better and then something happens and I’m an emotional wreck.

God bless you all. Peter
 

CWR

Registered User
Mar 17, 2019
158
I hope you come on here when it all gets too much for you; God knows this site has been my salvation at times. I am only glad that my lovely mother isn't around during this horrendous virus. I miss her so much, and I do think that the lockdown only makes all this worse since we can't just go out like we used to, so it's easy to brood. I cared for mum at home, and used to find her repetitive behaviour challenging at times, but now I miss her, even with her behaviour. When this is over, make the most of the time you have with your wife, even if she isnt what she used to be. I miss the times mum would look at me and say she loved me from the first time she saw me. Hug her. You have done your best for her. It's a blessing that she still knows you. My mum took my hand on her deathbed and kissed it. That act has helped me come to terms with my guilt over not always having patience with her.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,142
Kent
her determination and sparkle all gone replaced with compliance
I don`t know which is worse @Dutchman, the upset and wanting to go home or the compliance.

I did find the compliance made visiting easier but at the same time was upset by the downhill slope.

Find some comfort in knowing your wife is no longer distressed. Harder for you but better for her.
 

Dutchman

Registered User
May 26, 2017
616
Devon
I decided today to take a days break from all the anxiety over Bridget, me and the lockdown. I felt that if I didn’t make a firm decision I’d stay in bed all day and fret.

So fortunately the weather is good so I’ve been just sitting most of the day in the garden with a book. Oh and I’ve cut the grass.

Has it worked? Not really, because my upsetting thoughts keep invading the day. There is nothing I can do to during this lockdown and Im reading that COVI19 has affected care homes now and that’s a big worry. But there’s nothing I can about it apart from visiting tomorrow with some flowers and seeing Bridget through the window.

im off to the supermarket in a minute then my government allowed walk. Take care everyone.

peter
 

Dutchman

Registered User
May 26, 2017
616
Devon
What is wrong with me?! I’ve been looking at old photos and some of the advice about looking at the good times isn’t working.
I just see a woman who was sparkly, articulate, someone who loved me through all my many faults.
The photos show that date wise Bridget was ok at least 4 to 5 years ago and the deterioration took over quickly in about 2016/17. Who’d thought that she’d go downhill so quickly but, of course , on a day to day basis the signs weren’t always obvious.

I feel that I’m never going to accept the way she is now and, to make matter even worse, I’m dreaming every night that she’s back with me , normal, but I have to take back to the home. I wake up miserable.

I tried to talk to Bridget on the phone earlier on today and I said I loved so much and I’d be around tomorrow to see her. She sounded lost and I don’t think can appreciate my love for her and she said very little. But, the care manager said she was smiling so that’s a plus.

Ill have be careful with photos in future. I haven’t reached that stage yet where I can remain calm when I see them

love to you all.
 

kindred

Registered User
Apr 8, 2018
2,414
What is wrong with me?! I’ve been looking at old photos and some of the advice about looking at the good times isn’t working.
I just see a woman who was sparkly, articulate, someone who loved me through all my many faults.
The photos show that date wise Bridget was ok at least 4 to 5 years ago and the deterioration took over quickly in about 2016/17. Who’d thought that she’d go downhill so quickly but, of course , on a day to day basis the signs weren’t always obvious.

I feel that I’m never going to accept the way she is now and, to make matter even worse, I’m dreaming every night that she’s back with me , normal, but I have to take back to the home. I wake up miserable.

I tried to talk to Bridget on the phone earlier on today and I said I loved so much and I’d be around tomorrow to see her. She sounded lost and I don’t think can appreciate my love for her and she said very little. But, the care manager said she was smiling so that’s a plus.

Ill have be careful with photos in future. I haven’t reached that stage yet where I can remain calm when I see them

love to you all.
Nothings wrong with you Peter. I admire you for the way you are getting through this and allowing us
What is wrong with me?! I’ve been looking at old photos and some of the advice about looking at the good times isn’t working.
I just see a woman who was sparkly, articulate, someone who loved me through all my many faults.
The photos show that date wise Bridget was ok at least 4 to 5 years ago and the deterioration took over quickly in about 2016/17. Who’d thought that she’d go downhill so quickly but, of course , on a day to day basis the signs weren’t always obvious.

I feel that I’m never going to accept the way she is now and, to make matter even worse, I’m dreaming every night that she’s back with me , normal, but I have to take back to the home. I wake up miserable.

I tried to talk to Bridget on the phone earlier on today and I said I loved so much and I’d be around tomorrow to see her. She sounded lost and I don’t think can appreciate my love for her and she said very little. But, the care manager said she was smiling so that’s a plus.

Ill have be careful with photos in future. I haven’t reached that stage yet where I can remain calm when I see them

love to you all.
Nothing is wrong with you, Peter. I admire you for the way you are getting through this an allowing us to share your feelings and thoughts. It helps us all. Thank you. I can’t face photographs yet....with love, kindred
 

CWR

Registered User
Mar 17, 2019
158
I know ho w you feel. Sometimes, I feel better when I look at photos of mum, other times, I just
don't want to be reminded of what I have lost. I feel ok if I distract myself then feel guilty,as if i'm ignoring her. Stay strong.
 

Dutchman

Registered User
May 26, 2017
616
Devon
I’m now afraid of going to sleep because I have the same upsetting dream each night. Bridget is normal and we are together as we were years ago. We talk , go out. But she still has to go back to the home later in the day.

It’s really upsetting and I know it’s only a dream but it’s another thing that reinforces the the fact that we are apart.
Peter
 

Philbo

Registered User
Feb 28, 2017
807
Kent
I’m now afraid of going to sleep because I have the same upsetting dream each night. Bridget is normal and we are together as we were years ago. We talk , go out. But she still has to go back to the home later in the day.

It’s really upsetting and I know it’s only a dream but it’s another thing that reinforces the the fact that we are apart.
Peter
Hi Peter

I think that this current pandemic and the isolation/distancing measures introduced as a result, are all acting to amplify the negative aspects of being on a "dementia journey".

I sadly came to the end of our journey in January but of course that merely meant I had to start my journey. It is something I thought I had prepared for (well, as much as you can) and initially, it was shaky but at least I had the support and close company of family and friends. Then of course, COVID came along!

Well, the lack of human contact (physical company, as apposed to virtual - Facebook, Messenger etc) has meant I now have far too much time to dwell on things.

Like you, I have recurring dreams where my lovely wife is present but what is most upsetting (and in danger of pulling me down into the dark place I vowed to try and avoid) is I constantly remember the last tragic days and hours before she passed. Admittedly, I experienced this before but the isolation seems to make it less easy to shrug off with my usual "pull yourself together" mantra.

I know you are finding things very hard to deal with and I wish I could wave a wand to help you more. I hope that you can take some comfort from the support and love this community is directing your way.

Sincere best wishes.
Phil
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,142
Kent
It`s strange because I`m dreaming too and they are all about invasion or illness.

The invasion was down to hundreds of tiny tortoises climbing my back steps into the kitchen and I was sweeping them out like the sorcerer's apprentice.
The illness was my husband telling me he had found a lump and I dashed to the hospital in dressing gown and slippers to get an appointment for him.

We can tell where these dreams come from and however good a face we try to put on, they show how affected we can be internally.

I`m trying to think of three positives each day while preparing for sleep. It might be difficult for you @Dutchman and you too @Philbo but they will be there, somewhere.
 

Dutchman

Registered User
May 26, 2017
616
Devon
I’m writing this from my beautiful garden sitting in the shade that I’ve quickly rigged up. The only thing that would make perfect is for Bridget to be here, now, normal and us talking together like an ordinary couple. God I miss her so.

I know now that as well as all the loving support from you all, my family and my friends, this grieving can only be done alone. I cry for what can never be and am miserable a lot as I lurch from self pity to forced acceptance.

I heard a voice this morning downstairs ( it was my neighbour) and I actually thought Bridget was coming up the stairs. How long must this go on?
I just wanted to get this out to you all. I believe all I’ve said is very common

Peter xx
 
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Lirene

Registered User
Sep 15, 2019
174
I’m writing this from my beautiful garden sitting in the shade that I’ve quickly rigged up. The only thing that would make perfect is for Bridget to be here, now, normal and us talking together like an ordinary couple. God I miss her so.

I know now that as well as all the loving support from you all, my family and my friends, this grieving can only be done alone. I cry for what can never be and am miserable a lot as I lurch from self pity to forced acceptance.

I heard a voice this morning downstairs ( it was my neighbour) and I actually thought Bridget was coming up the stairs. How long must this go on?
I just wanted to get this out to you all. I believe all I’ve said is very common

Peter xx
God bless you Peter. God bless and save us Lord. Help us through this night.
 

Wifenotcarer

Registered User
Mar 11, 2018
287
Central Scotland
This morning I've been catching up on this thread and finding that these thoughts are my thoughts too. I have been avoiding the offer of Skype calls with OH because I have found them more upsetting than comforting, but today it suddenly occurred to me that fully bereaved spouses (i.e. those whose partner is actually dead, rather than those of us whose partner is still there but can't be reached) all say that they would give everything to be able to see and hear their loved one, one more time.
I/we CAN do that, albeit via technology. I shall book a skype call today.
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,847
69
Dundee
today it suddenly occurred to me that fully bereaved spouses (i.e. those whose partner is actually dead, rather than those of us whose partner is still there but can't be reached) all say that they would give everything to be able to see and hear their loved one, one more time.
I/we CAN do that, albeit via technology. I shall book a skype call today.
What a thoughtful post @Wifenotcarer. I confess it brought a tear to my eye.
 

Dutchman

Registered User
May 26, 2017
616
Devon
I’m self funding the care home which means that by September this year I’ll have reached the threshold of when the council gets involved with funding. As well as all the emotional part of all this and the Corona virus, I now have money side of things to worry about.

As I suspect the council are try to cope with the virus, matters will be much delayed and, of course, I can’t sit in front of someone and discuss the details. We all hope that the lockdown will be over in a couple of months but who knows.

What shall I do today? Shall I go to the home and greet Bridget through the window because that is a mixture of upset and sadness, but it’s good to see her. God what this dementia does to our minds!

Anyway I need to get going to do something. It’s so easy just to mope around. At least Bridget is spared the anxiety of Covid 19.

I sometimes wonder ( well a lot actually) what it must be like inside Bridget’s brain. She walks the corridors a lot so she’s not settled and must be confused. She doesn’t remember things and I can’t begin to imagine what that be like. I only hope and pray that she isn’t unhappy inside and there are times when she feels looked after.

god bless

peter
 

Stacey sue

Registered User
Jan 24, 2020
21
I am finding it really hard this isolation and not being able to visit my Dave, I just can’t move on from what he has become to what he was! Not being able to visit I am remembering as he was and not as he is! The care home have told me that he often asks where I am, and they say I am at work!! I just want him back home ,I love and miss him so much and he doesn’t know it! I am so consumed by this dementia grief, how will life be worth living again.I don’t want to go and see him through a window because I will be upset and he won’t know why I can’t cuddle him.This is hard. Love to you all Sue
 

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