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Dementia’s journey

Dutchman

Registered User
May 26, 2017
816
Devon
Hi

Just leaving the home after seeing Bridget for about 10 minute. Just parked up to calm myself down.

Damn it , as it never gets better. The heartache never goes away. As soon as i see her through the home window and see my darling wife looking at me wondering who i am, my throat tightens and i feel the tears coming. I suppose the constant reminder of who she was through seeing her like this will only lessen when she’s gone ( or me, who knows!). And then a different grieving will be in my life.

I wish sometimes there was something dramatic i could do to move away from the pain more of the time. But it’s just getting through each day, one at a time, because there is no dramatic substitute for the love you’ve lost. And it’s for me, after all, because i’m heartbroken for me because Bridget is oblivious ( i believe and hope) of this kind of torment and unhappiness. For that i’m comforted, because i love her and wouldn’t want her to be heartbroken like me.

I know i speak for many fellow sufferers who have lost so much. My heart goes out to you.

Peter
 

Grahamstown

Registered User
Jan 12, 2018
1,722
80
East of England
I am so sorry that you are feeling like that but take heart, getting it out of your mind on Talking Point helps so much, with all the kind people who support each other. We are always here and ready with a word of support.
 

Grahamstown

Registered User
Jan 12, 2018
1,722
80
East of England
Hi

Just leaving the home after seeing Bridget for about 10 minute. Just parked up to calm myself down.

Damn it , as it never gets better. The heartache never goes away. As soon as i see her through the home window and see my darling wife looking at me wondering who i am, my throat tightens and i feel the tears coming. I suppose the constant reminder of who she was through seeing her like this will only lessen when she’s gone ( or me, who knows!). And then a different grieving will be in my life.

I wish sometimes there was something dramatic i could do to move away from the pain more of the time. But it’s just getting through each day, one at a time, because there is no dramatic substitute for the love you’ve lost. And it’s for me, after all, because i’m heartbroken for me because Bridget is oblivious ( i believe and hope) of this kind of torment and unhappiness. For that i’m comforted, because i love her and wouldn’t want her to be heartbroken like me.

I know i speak for many fellow sufferers who have lost so much. My heart goes out to you.

Peter
I used to liken this suffering to the death of a thousand cuts. I also used to think better that I should suffer this not him. You are so strong Peter, to endure the torment and carry on with your love and support for her even though she is oblivious. That’s true love indeed.
 

Dutchman

Registered User
May 26, 2017
816
Devon
Heres a thing that will make you both smile (possibly) or bring a tear.

i found a jumper hanging on the back of the door that hadn’t been washed belonging to Bridget and I found myself burying my face in it for her smell. Of course i choked up and cried a bit for her and remembered her being close to me. It wasn’t till I saw the size on the label that i realised it was a size 10 and not Bridget’s but one belonging to my daughter.

I felt a bit foolish and sad.

Peter
 

Lirene

Registered User
Sep 15, 2019
211
Hello Peter, that is so sad and so very true to reach out for the slightest hint of your loved one. Everyone has their own smell, a unique scent of who they are and this brings so much comfort to many.
Reading some of your posts recently makes me thing you are slowly beginning a journey to live with this illness, side by side with Bridget, not so much fighting against it but learning to live with it as Bridget is doing.
My prayers for you and all.
 

Grahamstown

Registered User
Jan 12, 2018
1,722
80
East of England
I am actually wearing some of his old clothes and find comfort in that. A lovely sweater is fine for me because it shrank a bit in the wash, but it’s beautiful wool, bought when he was already unwell and so in good condition. It’s fine wool which I like and very warm.
 

Dutchman

Registered User
May 26, 2017
816
Devon
Must be comforting to wear our love ones clothes but there’s not much i could get away with as a bloke. Perhaps a hoodie or jumper. i’ll look tomorrow as i don’t go near her clothes that much . my dog has been delayed as he’s got an infection after the neutering so he’s on antibiotics. 😕😕
 

Izzy

Volunteer Moderator
Aug 31, 2003
63,014
69
Dundee
I have a couple of my late husband’s t shirts. I take one with me when I go on holiday. I don’t wear them but it’s comforting to still have something that he has worn.
 

Dutchman

Registered User
May 26, 2017
816
Devon
i had a call from the counselling people today explain that the service is no longer operating due to Covid. Bang goes my expectations of some more sessions to help clear up outstanding issues.

So i need to rely on this forum. So what’s on my mind today?

I had a strong recollection of a couple of times, way back, when i took Bridget from the home to the local cafe for drinks and cake. It was great to be together again and strange her being in the car just like nothing had been out of the ordinary. Just a couple going out.

But when we finished and going back to the home i turned left when our house was a turn right. Bridget said sorrowfully’ oh no, please don’t turn left’ She didn’t want to return to the home and who could blame her. I felt a traitor in fooling her into going back to the home. How much i wanted to take her our home then with the dream of going back to our old life together.

I know thats about 9 months ago but these memories haunt me and crop up, set off by the smallest fuse, to upset me.

After nearly 30 years of everyday being together as the norm i’m feeling she’s drifting away now. We haven’t touched each other since March and her company is gone.

I’ve found a cosy warm top of hers to wear. Nothing expensive but it’s hers.

Peter
 

Sarah_S

New member
Sep 2, 2020
5
oh Peter, I've only just signed up as my father has dementia and I find it difficult to cope with my emotions. I am making plans to migrate with my British husband to move closer to my parents (in the Netherlands). I want to give you a big hug and really hope you can see her soon. I know it's easier said than done, but don't blame yourself for the guilt. It is not your fault, you are doing nothing wrong. Nonetheless, it is painful. Lots of love
 

Stacey sue

Registered User
Jan 24, 2020
70
How much longer can this go on? I am so desperate to be able to hug my husband of 40 years, I know its not as bad for him, the fact I can not spend time with him ,life is in limbo?? I really don’t know if he gets anything out of the visit through the window? who knows, I know there are people worse off , my world has stood still.!!
will try one of his jumpers,but just makes me cry. X SSue
 

Dutchman

Registered User
May 26, 2017
816
Devon
i needed to speak to a Admiral dementia nurse today due to the fact that i still have moments where i’ve been blaming myself for Bridgets dementia and been making myself very upset with guilt.

This may help others who, like me, feel they need something or someone to blame as it’s otherwise difficult and sometimes impossible to get ones head around why this has happened and why to us. The nurse was very understanding and said this type of feeling was normal and i needed to understand that in no way was i to blame. Nothing i did or didn’t do at any time during our relationship had any bearing on the Bridget developing dementia. She was very firm on this.

I often ask myself why us. Why couldn’t we be just a couple getting on with our lives, getting older together and enjoying together what’s left. But it wasn’t to be and in the end we’re just another statistic of people developing dementia and going into a home.

God bless

Peter
 

Dutchman

Registered User
May 26, 2017
816
Devon
How much longer can this go on? I am so desperate to be able to hug my husband of 40 years, I know its not as bad for him, the fact I can not spend time with him ,life is in limbo?? I really don’t know if he gets anything out of the visit through the window? who knows, I know there are people worse off , my world has stood still.!!
will try one of his jumpers,but just makes me cry. X SSue
Sue i feel your upset. To be able to just touch is so normal but to have that restriction placed on us is so cruel. I’ve looked around for a jumper or top to wear but they’re all pretty and not for me! One thing a carer said today ‘ Bridget never smiles at us the way she smiles at you’. I’m special i’m sure, just not the closeness of a husband. But that would have its own complications in that she might fret or be anxious. Peter x
 

imthedaughter

Registered User
Apr 3, 2019
506
@Dutchman can you see/phone your dr re the mental health? You should be able to self refer to mental health services. I did this last year and although I still spiral sometimes into general self loathing I think I am coping with stressful situations a lot better. It wasn't talking therapy but an online course. They were supposed to have a follow up session with me but lockdown happened and I think everything went awry.
You probably know logically that the dementia is not your fault but the mind is not always rational, I find.
I know we have the Virtual Guilt Monster Bashing Stick©®™ here and I recommend it but sometimes I seem to have acquired my own self bashing stick and frankly that stick doesn't help anyone.
 

Dutchman

Registered User
May 26, 2017
816
Devon
I’m not having a good day.

I had decided to see Bridget today but have now decided not to go. After all she won’t know that i was to come today. I’m still in bed and that’s something i haven’t done for some time but i’m feeling sorry for myself and somewhat lonely. And i don’t know why particularly today and what’s set me off.

We all have good ( or at least better days ) or worse days i know but i’m angry i suppose that life has dealt me and Bridget such a bad deal. I also feel that my family think i need to sort of get on with it, and from their point of view they have all their own concerns that fill up their own lives.

I’ll get up soon and ‘get on with it’ but the loneliness is there all the time like my shadow and when i feel it most is when i think .....this is something i could be doing as a couple, sharing experiences, making plans together, like we always did not that many years ago, completely oblivious then of the tragedy of dementia and how it would dramatically change out lives.

I’ll sign off now. Peter
 

Banjomansmate

Registered User
Jan 13, 2019
2,190
Dorset
Peter, this may sound harsh but nobody is guaranteed a stress free and perfect life. You have been lucky to have experienced many years of happy married life which, sadly, dementia has brought to an ugly end. You ask “Why has this happened to me? To us?” The answer, to my mind is “Why not?” I asked the same question when my daughter was born prematurely and when my husband died aged 63 and both times I had to say to myself “There’s no reason why it should only happen to other people”, bad things happen in everybody’s lives and we are no different, we have to cope with it and go on living, making the best of what we have and appreciating all the good things we have already enjoyed.
You have your new greyhound to look forward to, he will pick up on your moods very easily so to make his transition from track to sofa as smooth as possible you need to be thinking about him, where you are going to take him for walks etc. Think of this as a new path in your life, you may be on a different path to Bridget but she is still with you but on the other side of the fence. Your ways will gradually differ which will be hard but you can wave from a distance. Remember those special smiles that she gives to just you, hold them in your heart because one day they will be important memories.
 

Dutchman

Registered User
May 26, 2017
816
Devon
Peter, this may sound harsh but nobody is guaranteed a stress free and perfect life. You have been lucky to have experienced many years of happy married life which, sadly, dementia has brought to an ugly end. You ask “Why has this happened to me? To us?” The answer, to my mind is “Why not?” I asked the same question when my daughter was born prematurely and when my husband died aged 63 and both times I had to say to myself “There’s no reason why it should only happen to other people”, bad things happen in everybody’s lives and we are no different, we have to cope with it and go on living, making the best of what we have and appreciating all the good things we have already enjoyed.
You have your new greyhound to look forward to, he will pick up on your moods very easily so to make his transition from track to sofa as smooth as possible you need to be thinking about him, where you are going to take him for walks etc. Think of this as a new path in your life, you may be on a different path to Bridget but she is still with you but on the other side of the fence. Your ways will gradually differ which will be hard but you can wave from a distance. Remember those special smiles that she gives to just you, hold them in your heart because one day they will be important memories.
What you say is, of course , true in many respects. Im told quite firmly by Dementia nurses never to compare myself or our grief to others going through this as there are so many variations of the dementia journey. Of course why should i feel that i’m on my own feeling ‘why us’ when so many have lost their loved ones or are still losing them and feeling anticipatory grief.

But here’s the rub. In the end I went to the home to see Bridget today and found her asleep in a chair and i could have spent a long time gazing at her through the window but just couldn’t manage more than a couple of minutes. I long for her and can’t comfort her.

Now i feel i’ve gone on long enough about me, because, in many respects, i feel i’m being selfish unloading my sadness on TP and actually feel that i’m going backwards instead of making some sort of progress. The books on grief and grieving are out again for me to find some sort of answers to any of this. I thought i could put them away. Where are the answers to the if only’s and i wish? I’ll stop now and take your advice to treasure what i’ve got left with her.
 

DianeW

Registered User
Sep 10, 2013
762
Lytham St Annes
Hello I just wanted to say I’ve never posted but read your thread every day.......

I am so sorry that you are struggling so much in your loss, loss of the life you deserve and have been robbed of by dementia.

Nobody can tell you how to feel and grieve for what you have lost or possibly understand....nobody can do that.....

BUT....what people can do is share their experience with you and here is mine -

I too have suffered loss in my life, mine was a complete loss in that the person died and I could never see them again, hold them, talk to them and I felt totally alone in the world ....despite being married and having a daughter.....I felt isolated, and loneliness like nothing ever experienced.

For me after wallowing in my grief and loss, pushing the other people that cared for me away, and sinking to a very low ebb...... I decided it had to stop and I had to start living my life again, I told myself I was being selfish and disregarding people in my life that were also very important to me.

I had had enough of just existing and wanted to live again.....it’s not easy, but I think you can help yourself by mixing with people and sharing with your family exactly how you feel.

You have sought help and now getting a dog I am sure will help keep you occupied, I had to do the same and fill my life with other things ......ultimately how you learn to live differently is in your hands.

I can now understand how very blessed and lucky I was to have that special person in my life, am I angry they died....absolutely yes, do I miss them....yes every day, is my life the same...no life will never be the same for me, but life does have to go on, life is very precious and must be lived.

Looking back I felt guilty going anywhere, or doing nice things, thinking they haven’t got that option....but life sucks and we have to learn to live a different way.

Your lovely wife is apart from you, but the disease did that, she is very well cared for and really does seem as settled as can be.....you on the other hand not so, please consider all the supportive posts you have had and remember this...it’s ok to move forward, it does not mean you are forgetting your wife or don’t care anymore....it’s just that life must go on and you owe it to Bridget and yourself to allow yourself to do just that x x
 
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