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Dementia’s journey

Philbo

Registered User
Feb 28, 2017
843
Kent
I moved the lovely picture of my dear wife that we used at the funeral, from the front room to the dinning room yesterday. It's not that I don't want to continue remembering her (before she got the dementia), but that at the low moments (late at night, getting up in the morning), it was sometimes too upsetting?

With it in the dinning room (which doesn't get much use, now I'm on my own:() it's much nicer when I occasionally walk past - or when I dust the sideboard (even less occasionally:D).
 

Dutchman

Registered User
May 26, 2017
864
Devon
Ah Philbo, I know what you mean. I’ve touched nothing in the front room. Even touching the frames is painful, almost like going behind her back to do anything. We have stacks of photo albums that I cannot touch. I tried once but it took me a long time to recover.

Bridget lost the ability to form sentences or find the correct word a few years ago. This isolated her in social situations . It wasn’t so bad around family but she avoided meeting other people.

now I look back on it I wasn’t that sympathetic and when I needed to see friends I went on my own. Now I’m able to view it more dispassionately I realise how awful it must have been for her. She got quite jealous of me talking to others because she felt alone and frustrated. And I can understand now her reluctance to change her clothes or wash or eat because she would have felt” what’s the point” when she felt so unhappy and alone.

And I understand better now why she wanted in the end to live with her parents as she felt they were the only ones to give her love and comfort. No wonder she was desperate to leave the house and get away from me. She didn’t recognise me as her husband so wanted desperately to find him to be able to recover his love and protection.

i let her down when she needed me the most and now I’m paying the price. I know it was dementia that got her in the end but my attitude lacked empathy towards the one person who deserved my care.

I wish I could find and believe in some excuses that would take the pain away but I’m unable to forgive myself.

I’m going to the home soon with flowers and to see her through the window but I feel that my loving her now is all a bit too late

sorry to be a wet rag this morning but I had to get this out.

bless you all

Peter
 

Dutchman

Registered User
May 26, 2017
864
Devon
I’ve returned from the home and straight away got on to TP. I’m I becoming a bit of a bore on here, I don’t know!?

again we looked at each other through the window and I passed through the flowers. I’ve a distinct feeling now that from her facial expressions and body language that she is finding it hard to know who I am. Bless her, she makes an effort as i can see her trying to work out the situation. And she puts a smile on as if to say” I know you and I don’t want to disappoint you because you’re someone special “

In this absolutely Crazy world of dementia nothing is clear or simple or straightforward. I come away from the home confused and always upset.

And I feel, like most of you, that I’ve no one who really understands that I can unload and share with ( apart. from the forum) . So we’re alone with our thoughts so I think we should be free to feel how we like.

Bless you all

peter
 

Dutchman

Registered User
May 26, 2017
864
Devon
It’s Sunday. 11.30.

Hello everyone. I do feel I’m becoming a bit of a pest on TP laying out my feelings but I’ve got nowhere else to go.

i can’t get through to the home on the phone as I suppose they’re busy. Anyway they just tell me she’s okay.

I'm sobbing my heart out and It simply started when I looked up and saw a picture of Bridget and I’m reminded of all the suffering both her and I have gone through. I really do envy people who seem to get through this better than I’m doing.

My family and some of my friends except me to be better by now but I’m not. Why would I be better?

I've had my wife taken away from me

I’m on my own and I admit I’m lonely

I’ve often thought of just ending it all but can’t as I have to be there for her

she doesn’t know me as her husband and struggles to make sense of who I am now

all our plans are finished

I had support from a counsellor but that’s been put on hold. Now I struggle to keep it in and unload on you guys and an Admiral Nurse but I’m the type of person who feels I’m being a nuisance. Stiff upper lip and be a man and all that. But I feel weak and pathetic.

bless you if you’re reading this

Peter
 

Helly68

Registered User
Mar 12, 2018
749
@Dutchman - Peter you are never a nuisance and you should always feel that you can post here. TP is for unloading, so unload away.
I don't always comment on your posts, as our situation is different and we all know sometimes the worst thing is well meaning advice from people who don't understand. Dementia is very cruel in that it plays on all our emotions, the PWD and the carer. But this is the disease itself doing this, not you or Bridget.

Please keep on posting, we are listening. I remember one poster (can't remember who, sorry) saying she envisaged the members of TP all holding hands, silently supporting each other. I loved that image.
 

Batsue

Registered User
Nov 4, 2014
4,893
Scotland
Never feel that you are a pest, I always read your posts and wish there was something I could say that would help you.
 

Woo2

Registered User
Apr 30, 2019
2,980
South East
It’s good that you do have somewhere to let those feelings out @Dutchman , it’s a very personal journey so it makes no difference if others are in front or behind you on this path, you are where you are , keep posting and letting those feelings out . I’m sure your family don’t expect you to be better but don’t really know how to help you as they are experiencing it differently as a child of a PWD compared to your life partner , as much as they can try to imagine how you feel they will only understand when they go through it theirselves . Take care .
 

Dutchman

Registered User
May 26, 2017
864
Devon
hello all

Since about Easter last year, because Bridget hadn’t washed or changed any of her clothes, she smelt awful and refused to treat me as her husband, I moved into another bedroom. I’m still in this room as I cannot face sleeping in our bed again, not yet anyway.

This morning, for some reason, I tried lying on our bed to somehow be closer to her. But this was the bed where she got into without washing and keeping the same clothes on days on end. It brought memories of shouting, pleading and anxiety. After a while , the strange thing was, I felt numb and couldn’t cry, even though I expected I would.

But none of that was her fault, I know, but my memories are still raw. i really don’t know if my fellow TP’ers have gone through the same experiences but I would expect so.

How do we get through the day? Occasionally crying a lot, feeling sorry for our OH ( and ourselves) , imagining it’s all a dream (weird I know but so what!) , lots of films on tv, reading, oh, and lots of sleeping ( probably too much but so what!) .

Going to the supermarket now ( exciting). Thanks for reading

Peter
 

Dutchman

Registered User
May 26, 2017
864
Devon
I’m visiting tomorrow and taking some flowers. It seems that when I don’t see Bridget it’s like taking a step away from her for good. I don’t want this to happen but lockdown has kept us apart and ruining any slight relationship we have or had.

All the dementia behaviour over the last 4 or 5 years, I can’t easily imagine it any more. I try to remember what it was like so I can say to myself that putting Bridget in the home was justified. I remember posting here on the days when it was so bad that I walked out of the house leaving her alone.

I suspect I’ll be posting on here for some time yet because it’s always forever on my mind. The grip of grief just won’t ease up.

peter
 

Dutchman

Registered User
May 26, 2017
864
Devon
Hello everyone

Am I going mad or is this to be expected?

I dream such vivid and real dreams with loads of detail. I woke up crying about 30 minutes ago so I’ve made a drink and come back to bed

The dream is more or less the same every night. Bridget is fine, no dementia and talking to different people. I ask her why are you like this , how come you’re better and what about the care home, shouldn’t we be telling them that you’re ok. She’s unable to comfort me and I tell all about my upset over the dementia but she’s not interested.

For crying out load, I’m not even free of this in sleep. I’ll get to the point where I won’t want to sleep.
I’m seeing friends later and they won’t understand although they try their best. So we put a brave face on, say we’re managing okay, yes it’s sad and cruel but no one can live this for us and we live each day in a jumble of upset and numbness.

Another day to get through. I’m seeing Bridget this afternoon, my wife and love.

peter
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,116
Kent
Hello @Dutchman

I really do envy people who seem to get through this better than I’m doing.
You may think this is so but you only see what people are willing to share, no one sees what is behind closed doors.

Many suffer in silence which is not always stoical and many rationalise their situation which is not always possible.

I was one who rationalised. I told myself few couples die together unless they are in an accident. In the majority of relationships one outlives the other. I knew my husband was less practical than I am and would have had an even tougher time managing alone. It doesn`t mean I haven`t been affected by the dementia experience or by loss it just means I have been able to accept my lot.

I also knew our son was grieving for my loss as well as his so didn`t want to add to his worries.

Do your children visit their mother @Dutchman? Do you know how painful it might be for them to worry about you as well as worrying about her?

Your Bridget is still with you and although it might be difficult for you to find her she is still in your life.
 

Dutchman

Registered User
May 26, 2017
864
Devon
Hi Grannie G
Thank you so much for replying. You’ve always been there for me and I’m very very grateful.

The children don’t visit much as they all live miles away and have jobs that keep them at home ( on the computer) or teaching. I’d like to think they’re concerned about me and they probably are in the own ways.

Of course it would be useful and a comfort if I could make sense of it all either by rationalisation or squarely facing facts but that’s not me. In many respects I wish I was less emotional about it all but ,again, that’s not me


Peter
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,116
Kent
Hello @Dutchman.

It`s a pity your children don`t live nearer. I`m sure it would make life easier for you if they did.

I hope you didn`t think I was criticising you. We all have different ways of living with the challenges we are faced with and can only address them in the manner our basic nature allows.

I do hope there comes a time when you are able to live with what life has given you. Please don`t give up hope.
 

Dutchman

Registered User
May 26, 2017
864
Devon
At last I have a date for my prostate surgery in two weeks time. So I’ve now got something else to think about and at least I don’t have to make arrangements for Bridget.

The nurse said be additionally careful about isolation now.

So, now I have to think about myself but I’m also, naturally, nervous because if anything goes wrong I won’t be there for her. It’s now you realise you’ve lost your companion, support and carer, for you at a major point in your life.

Ive become quite close to many of you on the TP and I want to say a big thank you for. , which, after all, is a love for each other.

peter
 

Philbo

Registered User
Feb 28, 2017
843
Kent
Hi @Dutchman Peter

Great news indeed, but I can understand the anxiety that those of us living alone can experience. My late wife lost many of her cognitive abilities fairly early into her 6 year dementia journey.

I therefore had to quickly adjust to becoming self reliant, whilst learning how to care for her too. Sounds almost silly now, but simple things like scratching your back, trying to put a plaster on your back........

We will all be waiting to hear how you get on and as you say, at least you will know that Bridget is safe in the home.

Good luck and best wishes.
Phil
 

kindred

Registered User
Apr 8, 2018
2,526
At last I have a date for my prostate surgery in two weeks time. So I’ve now got something else to think about and at least I don’t have to make arrangements for Bridget.

The nurse said be additionally careful about isolation now.

So, now I have to think about myself but I’m also, naturally, nervous because if anything goes wrong I won’t be there for her. It’s now you realise you’ve lost your companion, support and carer, for you at a major point in your life.

Ive become quite close to many of you on the TP and I want to say a big thank you for. , which, after all, is a love for each other.

peter
I am glad about this Peter and you will recover well. Yes, we are all holding hands on here and you have been such a force for good in this respect. Thank and God bless you. With love, Geraldine
 

Stacey sue

Registered User
Jan 24, 2020
77
Yes I am glad too, although I don’t post very often I do read yours and other posts. I find it a comfort to know I am not alone feeling like I do. Please keep posting and recover quickly, we are all holding hands as kindred says ,and I for sure need the support , kind thoughts to you all. SSue.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,116
Kent
I hope for successful surgery for you Peter @Dutchman and a full recovery. At least you will be able to recover in peace knowing your wife is being well cared for.
 

Batsue

Registered User
Nov 4, 2014
4,893
Scotland
I'm glad to hear that you have a date for your surgery, it's time to look after yourself, Bridget is safe and cared for.