Dementia’s journey

Dutchman

Registered User
May 26, 2017
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76
Devon, Totnes
I’m not coping today. I need to write this down. I feel I can’t go on living like this anymore and sometimes I wish the virus would finish me off. But I have a daughter who would miss me and suffer and I can’t put her through what I’m going through.

What can I possibly do to make myself feel better, but there nothing, and it’s hopeless.
I’ve just phoned the home and Bridget was asked to speak to me but she didn’t want to speak to me as she’s confused to who I am. My darling wife is a shell of what she was i need to comfort her but can’t. Acceptance is impossible because even with the dementia she was my woman to look after.

My house is so empty and still now and I’m interested to know how others cope with this grief. What’s not helping is that I’m on hormone tablets which can make you possibly more emotional.

I’m fed up crying, fed up worrying and want some form of respite from it all. I often go back to bed or curl up on the sofa at any time because it’s a comfort. Some say that’s not healthy but they need to live in my shoes to realise the pain of it all.

gone on a bit.

Peter
 

Stacey sue

Registered User
Jan 24, 2020
125
0
Hi Peter, yes I am going through the same journey, They face timed me today so I could see Dave, he was more interested in eating the biscuits they had given him. It was so upsetting I just want to give him a cuddle. I don’t know if he knew me? The deterioration is heart breaking. The only positive is I made a photo book on line of his life from young boy to last year. He loves this book and the Carers say he takes it every where with him?If he doesn’t then I am happy to think he does?? He was looking at it in the face time , I told him I would do another for him and was surprised with his reaction. He said yes and smiled!! I cry every day for the man he was, he wasn’t the easiest man to live with, but only remember those great times. It helps so much to read other posts just to know your not alone. until you have been through this few know how it feels, There is comfort in knowing your not alone. Sue.
 

kindred

Registered User
Apr 8, 2018
2,937
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I’m not coping today. I need to write this down. I feel I can’t go on living like this anymore and sometimes I wish the virus would finish me off. But I have a daughter who would miss me and suffer and I can’t put her through what I’m going through.

What can I possibly do to make myself feel better, but there nothing, and it’s hopeless.
I’ve just phoned the home and Bridget was asked to speak to me but she didn’t want to speak to me as she’s confused to who I am. My darling wife is a shell of what she was i need to comfort her but can’t. Acceptance is impossible because even with the dementia she was my woman to look after.

My house is so empty and still now and I’m interested to know how others cope with this grief. What’s not helping is that I’m on hormone tablets which can make you possibly more emotional.

I’m fed up crying, fed up worrying and want some form of respite from it all. I often go back to bed or curl up on the sofa at any time because it’s a comfort. Some say that’s not healthy but they need to live in my shoes to realise the pain of it all.

gone on a bit.

Peter
With you in spirit, Peter. I can only cope with the grief of losing Keith a few months ago by constantly telling myself grief is normal, grief is normal. But I did not have the long drawn out agony without being able to see him. This is torment of an unusual horror. Going back to bed or curling up on the sofa is a good idea. We're so attuned to trying to fill our time and make the best of things but that is impossible at times like these. Endurance is all we can do. You are a good man. with love, Kindred.
 

Dutchman

Registered User
May 26, 2017
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76
Devon, Totnes
With you in spirit, Peter. I can only cope with the grief of losing Keith a few months ago by constantly telling myself grief is normal, grief is normal. But I did not have the long drawn out agony without being able to see him. This is torment of an unusual horror. Going back to bed or curling up on the sofa is a good idea. We're so attuned to trying to fill our time and make the best of things but that is impossible at times like these. Endurance is all we can do. You are a good man. with love, Kindred.
Many thanks Kindred
It’s at times like this that it’s good to be reminded that my feelings are normal. Grief can only be handled one hour at a time.
Kindred, you are in my thoughts with your loss of Keith. We can only be here for each other. Sometimes it’s enough to know support is only a post away

bless you. Peter
 

Dutchman

Registered User
May 26, 2017
2,348
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76
Devon, Totnes
Hi Peter, yes I am going through the same journey, They face timed me today so I could see Dave, he was more interested in eating the biscuits they had given him. It was so upsetting I just want to give him a cuddle. I don’t know if he knew me? The deterioration is heart breaking. The only positive is I made a photo book on line of his life from young boy to last year. He loves this book and the Carers say he takes it every where with him?If he doesn’t then I am happy to think he does?? He was looking at it in the face time , I told him I would do another for him and was surprised with his reaction. He said yes and smiled!! I cry every day for the man he was, he wasn’t the easiest man to live with, but only remember those great times. It helps so much to read other posts just to know your not alone. until you have been through this few know how it feels, There is comfort in knowing your not alone. Sue.
Hi Stacey sue
I don’t know about you but I have these moments when I think it’s all so unreal, that I couldn’t possibly deserve this , me or Bridget, that I’ll see her walking up the path as usual. When I dream Bridget doesn’t have dementia and we are ordinary again. Then I wake up.
I too remember all the good times., ordinary, boring, mundane, just being a couple really.

when I was in the thick of it and the dementia was driving me crazy I wished her away and brought out the horrible side of me. Now, not appreciating before what it would be like alone, I can’t come to terms with it.

Tomorrows another day and I pray I’ll feel better.

Best wishes, Peter
 

Stacey sue

Registered User
Jan 24, 2020
125
0
Hi, yes I totally get that! I wish I had more insight when Dave was diagnosed to really make the most of those times when he was not Dave before dementia , but nothing like what he is now. I am sorry and have regrets that I didn’t try to keep him home for a little longer. The inevitable was happening ,the reality is it was out of my control. At times I try to think what he would say if he was in his right mind.I know no one will ever love me like he did, he would not want to see how upset I am most of the time, I do get comfort from that no mater what he does now,It is not him! This is just the shell of the man I love, He would hate to see the heart break dementia has caused. Stay positive , Sue.
 

BSN

Registered User
Oct 1, 2017
26
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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.
I agree with Izzy, what a thoughtful post. My partner died on 7 March this year and whilst I am pleased she didn’t have to be in her care home with no visitors, I would give pretty much anything to have her here with me now.
 

Dutchman

Registered User
May 26, 2017
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76
Devon, Totnes
Well I’m thinking thoughts that I haven’t done for a long time, since last September 2019.

I went to the home this morning with some flowers and through the window saw Bridget asleep in a chair in the lounge . The carers took the flowers and said they would bring her to the window.
As soon as she saw me she blew kisses and, although she probably doesn’t understand, I said I loved her, missed her terribly and, much against the rules, we held each other’s hand through the partly open window. She said that’s lovely.

My thoughts are these....... she seems so ok now, apart from the vacancy in her face, and I wonder could I bring her home?. Would she be happy here? Can I take that chance? . How long would it be till things maybe reverted back to what it was like last year? . I’d lose the room in the home but I’m so desperate for her to be with me. Am I being so selfish and self centred that I’m not thinking logically?

It’s so cruel that these mixed up emotions are doing to me. I just cannot accept the situation and I wonder if I ever will.

I suppose, like all of us here, we just want someone to wave a magic wand and everything will be alright, before dementia. I just wonder how much more of this I can take. I look around our lovely house and really feel that I don’t deserve this while my Bridget is confined to the home and her little bedroom.
I want her back here to share the house with me. Is that unreasonable?

It helps that I can share these times with you all

peter
 

Woo2

Registered User
Apr 30, 2019
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South East
It isn’t unreasonable at all, I don’t feel qualified here to comment as I have not been in your situation but I will just say it as I see it. You are going through unimaginable heartbreak and pain and your natural instinct is to try and make that pain less by reversing the situation , that is completely understandable , the lockdown is compounding it all . If you were to bring her home she will be further along the path than last year and you may find that incredibly hard , she will likely be hugely unsettled by another move , you will be alone in caring for her whilst restrictions on movement are in place and your family won’t be able to visit and help , your heart is aching but the reality will probably be far more painful for both of you . Wished I could say something to make it better for you .
 

Stacey sue

Registered User
Jan 24, 2020
125
0
My experience of this is no two days are.the same. I can speak to Dave and convinced I can care fo him at home. and I would in a heart beat. The reality is he is going to get worse. He is not going to stay as he is now. That being the good day. Although this is heartbreaking for me ,and it is. I want what is best for him. Although in his right mind given the choice he would rather be home in our house with me! But he is not in his right mind. He is in his dementia mind. I am always hopeful when there is good days ,and I question if I could have him home. I don’t want to unsettle him and it would to move him ,and then even worse if he had to go back .I couldn’t cope with the thought of putting him through that. I just want to be able to spend time with him,. and when lock down is eased I will. Sue.
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,415
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Newcastle
It is not unreasonable but it is also not a real option @Dutchman. You know this. Trying to get back what you have lost would not be in Bridget's best interests. Whilst I empathise I must also scold you for taking advantage of the situation to break the rules of lockdown. I am sure that this was a risk not worth taking and it doesn't seem to have helped you to find peace. Hard as it is you need to accept the new reality and make the best of it. You have done very well since your first post and have had good counsel from your many friends on DTP. Reflect on this and try for Bridget's sake to continue doing what is right. With best wishes as ever.
 

Dutchman

Registered User
May 26, 2017
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76
Devon, Totnes
It is not unreasonable but it is also not a real option @Dutchman. You know this. Trying to get back what you have lost would not be in Bridget's best interests. Whilst I empathise I must also scold you for taking advantage of the situation to break the rules of lockdown. I am sure that this was a risk not worth taking and it doesn't seem to have helped you to find peace. Hard as it is you need to accept the new reality and make the best of it. You have done very well since your first post and have had good counsel from your many friends on DTP. Reflect on this and try for Bridget's sake to continue doing what is right. With best wishes as ever.
You’re right Northumbrian_k, it was pretty stupid of me to make contact. Thanks for telling me off.

best wishes
Peter
 

AliceA

Registered User
May 27, 2016
2,911
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Dear Peter, you are perfectly normal and logical to think of ways to get your wife back home in your care, you love her and always will. The real problem is that is just not viable or practical.
Lockdown is so cruel in these circumstances.
I really feel for you, I am no longer in that position but when I was I thought up all kind of ways I could manage, I even looked at the possibility of moving in myself.
None were remotely feasible when I worked it out, but my how I tried.
You have done so well, you are doing well and you will do well.
It may be useful to report the side effect of the meds you are on.
Sometimes we do just need to curl up and sleep. You are grieving and there are no set rules for that. Be kind to yourself, x
 

canary

Registered User
Feb 25, 2014
25,018
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South coast
The trouble is, Peter, that what you want (what we all want, really) is your old, pre-dementia wife back again. When its a "good" day and they seem calm and settled it is easy to fool ourselves into thinking that they are back. It is easy to build "castles in the air" about what it would be like to have her back home, but even if you managed it, the reality would hit you almost immediately. Its just not viable. Your wife is only settled and calm because she has a whole team of professionals looking after her night and day. At home there was just you being run ragged - and thats what it would be like if she came home again.

The lockdown is just making everything harder, but there will be an end to it.
 

Dutchman

Registered User
May 26, 2017
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76
Devon, Totnes
After my mistake yesterday of holding Bridget’s hand It’s reinforced the fact that I really am a self centred person and have been mainly thinking of my own feelings. All through the years of this dementia ordeal I’ve more or less considered my own feelings and how I’ve been affected. I need to put Bridget first.

I’m going to give the TP a rest and try to face the reality of the situation.

Bless you all, Peter
 

Woo2

Registered User
Apr 30, 2019
3,652
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South East
I don’t think you are self centred at all ! You are being hard on yourself , please know we are here to help, listen and support you ,These are extraordinary times we are in , uncharted territory so we are all learning how to deal with it . Please be gentle and kind to yourself .
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,415
0
Newcastle
That really is not true @Dutchman. You have shown throughout that it is Bridget that you put first. You can't help wishing that things could be as they used to be. I feel that way too. That does not make either of us self-centred. Please don't give up posting as that would make me feel guilty for being too forthright. Try to read the positives in what people say and know that you will always find support here.
 

kindred

Registered User
Apr 8, 2018
2,937
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That really is not true @Dutchman. You have shown throughout that it is Bridget that you put first. You can't help wishing that things could be as they used to be. I feel that way too. That does not make either of us self-centred. Please don't give up posting as that would make me feel guilty for being too forthright. Try to read the positives in what people say and know that you will always find support here.
After my mistake yesterday of holding Bridget’s hand It’s reinforced the fact that I really am a self centred person and have been mainly thinking of my own feelings. All through the years of this dementia ordeal I’ve more or less considered my own feelings and how I’ve been affected. I need to put Bridget first.

I’m going to give the TP a rest and try to face the reality of the situation.

Bless you all, Peter
Please don't leave us, Peter. We are all the better and stronger for your insights and wisdom that you so generously give us. with love, Kindred.
 

Shedrech

Registered User
Dec 15, 2012
12,649
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UK
hi @Dutchman
sometimes a break from something does allow time to find other ways to deal with situations and offers a chance to seek out and create some other interests and routines ... possibly see things from a different perspective .... maybe the opportunity to connect more with family too

so not reading or posting for a while may well be positive for you

DTP is always here should you pop back once in a while