Peter i don’t think you can overcry in your situation. Your posts are so gut-wrenchingly sad and I feel terrible that they make me feel lucky in some ways that myself or my husband at least don’t have to experience what you are going through.
I also find hope in your posts. If you can survive this I can keep going. Please don’t stop posting. I am sorry my post is so selfish but I want to let you know that you and Bridget matter to us who are reading. It’s hard to know what to say to this awful situation as there is no comfort we can give you. I read sometimes and don’t post as I don’t know what to say… words aren’t enough.
I think you should cry if you want to and do anything else if you want to. Whatever gets you through the day.
Is there a notice board at the carehome or any support posters/leaflets for organisations you can contact for support… nothing can really help but maybe through this kind of channel there is someone going through similar and maybe they will offer better words at least…
FleurDeLis. Thanks for replying. I know very well that it’s difficult to know what to say as I find that myself.
I’m encouraged to write a journal by my counsellor and ive done this off and on since the dementia started in 2017. But I was writing this morning and I couldn’t continue when I remembered the time when Bridget suddenly asked me what my wedding ring meant and I knew then something had shifted. The next morning I wasn’t her husband anymore.
She kept on and on into taking her to our local hospital 4 times looking for me and I was so angry and shouted and cried and she asked the staff where her husband was with me behind her and I got her home and she looked in sheds, rooms , round the roads and cried because she couldn’t find him. I lost it and said never again and I couldn’t appreciate what she was going through and I feel wretched that I couldn’t or wouldn’t comfort her then when she needed comfort the most. I’d had a couple of years bad dementia problems by then but even so I feel I could have done more. Who knows!
In many ways I feel I need to be punished to try and pay the debt. Perhaps my grief and heartache and remorse are my punishment.
Anyway, right or wrong that’s what I’m left with today
It’s strange isn’t it that when I was looking after Bridget here at home we had very little contact with the outside world but I didn’t particularly feel lonely. Now I’m on my own I’ve managed to see more people, contact different people even in these times of Covid. But I feel more lonely than ever .
I suppose it’s because I’ve lost my caring role because that’s all I really wanted to do, look after Bridget. I needed very little else.
Its cold and dark and I’m miserable. Not yet 7pm and I might as well go to bed.
Do you feel lost about your future because I know I do. I look into the future even if I’m advised not to and see not very much. How does anyone keep motivated?
The council have agreed full funding for the home so no top up from me required. Just got to wait for the financial assessment now of Bridget’s money. Another hurdle jumped .
Hello Peter, yes I feel like you. My husband and I at home was my very favourite thing. We didn’t have big dreams or fancy trips, just liked being homely. I never would have imagined he would die in our safe sanctuary home all of a sudden. I thought the danger was everywhere else but home. I turned 40 last year and thought I was half way through my life, I wasn’t having a mid life crisis or anything as i knew I was really happy. We rarely saw other people even before covid.
Now I feel like my past is some kind of fantasy in my head because I’m the only one who knows it, I can’t say “you remember…” to anyone about all those things. Cant verify something I don’t quite recall. My present is all about “getting hour to hour” towards a future that is shattered and no longer matters.
I see a good counsellor who does help. This week I said to her what is the point of me working through all these impossible trials in the lists she had me make of the practical things needed to continue my life without my husband (like being able to drive, fixing the gutter, getting skips that are blocking the front door picked up, learning to not be scared on my own, learning to operate the smart home he made so I can switch the bloody lights off…there are 57 points on it so far).
What is the point because even if I manage to learn all this stuff/overcome fears and finish the list in the end… two years from now or whenever… he still won’t be here will he. There is no prize. I knew life was meaningless when he was here but I still enjoyed it a lot. Now… yeah…
Good news about the funding at least.
Hope you get some good sleep or at least rest tonight, goodnight
I’m talking to my counsellor this morning and I’ll probably say the same as you about the pointlessness of it all because that’s how I feel.
The loneliness is getting to me more than ever now and I’m fed up seeing the same old arrangement of stuff every day. When you’re with someone it gets moved around, changed or tidied up.
I’m retired now and just have myself. We had such plans together just doing boring ordinary things. But I’ve had breakfast and a shower and I’m back in bed writing this because it’s safe and warm.
I saw Bridget yesterday but she quickly turned away distracted and not interested. I’m losing her bit by bit… The staff say here’s Peter your husband but it means nothing. But I go because I have to because I fear if I don’t It’ll be me finally saying goodbye and I couldn’t face that.
It’s so good of you to rely to my posts. We manage to get through each day don’t we somehow.
I felt that life might be meaningless too, but i guess we didn’t think too much about it when we could enjoy the trivial things with our loved ones… Now I look at trees, birds and butterflies and I wonder all these beautiful things (but meaningless?) are just the result of a coincidence in our universe? Could everything I’ve experienced so far be meaningless too?
I seem to question a lot of things these days now without my partner keeping my feet on the ground, it’s sort of like free falling and it’s utterly insecure.
Another day, cold and windy so I’m steeling myself for a long walk today. This ticks the boxes of exercise and getting rid of time away from the house.
How are you today? I spoke with my counsellor yesterday and there were various helpful points made. Firstly, that no matter what we feel under no circumstances are we to judge ourselves because no one else is dong the grieving for us. Basically sod those who expect us to be different. And she encouraged me to cry whenever I felt the need.
I think people like us are brave ( even if we think ourselves weak) , we are doing the impossible in trying to keep it together in impossible circumstances.
Just to talk here to others is a comfort knowing that at this very moment someone is feeling the same.
Did you manage to get out in the wind? I did and it nearly blew my socks off (I understand that saying today!!) It was good though and because it was early there was no one around which is how I like it, I jabber along to René/myself as I am walking sometimes.
I am doing quite OK today so far. I was nervous this morning as I was expecting a company to come and quote for gutter repair (the house gutter is hanging off the house since before my husband died, he had planned to fix it). The bricks are turning green after these months of heavy rain and i am concerned damp will get into the walls so it is something i have been putting off for months but this last week worked my way up to. I decided to pretend my husband was inside working from home on a conference call as i was anxious dealing with a trademan at home for the first time on my own for a variety of reasons.
The result was that for 30 minutes i could talk about René in the present tense which was actually very soothing. The guy also admired some of my husband’s handiwork and took a photo of the gazebo René had made to show his own wife. I know it’s fiction and I can’t go on like that forever but for now it helped and I am feeling quite pleased that I did this small thing so I think I will accept the quote and book in tomorrow morning after I’ve left acceptable time for “speaking to my husband”. I think your counsellor is right, whatever we do is the right way because often it feels it’s the only way anyhow…
Yes the most comfort I get is in these forums. I am so glad we are all here even if it would be of course much much better if none of us needed to be here…
I hope you can have a good evening and a pleasant sleep.
Take care.
I’ve just finished some jobs round the house and found myself talking to Bridget hoping she’ll like what I’ve done. Big mistake ! Just reinforces that she’s not here to say anything, just me talking to an empty house.
What is a partner, friend, lover anyway. I’ve realised it’s someone you can touch at anytime, share an experience, remember together, move stuff about so it’s in a different place, know that someone else will see what you’ve done and say something. I can do anything now and I don’t like it.
I even found myself today being angry at her for leaving me like this but that’s not fair I know because she never wanted dementia. I just feel so damn, I don’t know, abandoned.
Anyway, another day gone and I’m in my safe warm bed. Tomorrow, who knows, more of the same!
@Peter
From what I have read anger is part of grief. I feel angry at my partner’s sudden death, and that certain things were not sorted out beforehand which have left me in a difficult situation. However then I feel guilty. The death was completely unexpected and sudden and we thought we had many more years together to “do that later.” It wasn’t my partner’s fault. We had an incredibly happy relationship, and I feel guilty for sullying that with my negative feelings, but this whole situation is so hard to deal with.
Dementia is not Bridget’s fault either, but you are the one picking up the pieces, and although Bridget is still alive the personality of the woman you loved and spent time with has effectively died. I really feel for you as you are also in a living hell. She would want you to do the jobs around the house that you are doing. I assume she loved your home and would want it to be cared for.
I spent a lot of time at the end of last year sorting and cleaning. In my mind was what if I died and someone found me and saw the mess. Got to mid January and thought what’s the point nobody sees it, so let everything go. Had to have a workman in this week, and I looked around the house and was so embarrassed and disgusted at the state of the place that I have decided to try and go back to the cleaning and sorting. Will be glad when the charity shops re-open so I can donate. I cannot just throw anything useful away, as I am from the make do and mend generation. Love the fact that someone’s rubbish can be another person’s treasure. I took a beautiful vase into a charity shop once that had belonged to my late mother. An old lady spotted it as I was about to hand it in and fell in love with it, and bought it there and then. I still feel a glow at the delight on that lady’s face, and know my mum would have been pleased.
I’ve just finished a zoom meeting with family and friends. Didn’t really want to do it but thought I’d do my best. Everyone was cheerful and upbeat and talking about Covid and home improvements and hangovers and diets.
The only mention of Bridget was ‘has she had her jab yet’ and I filled in the details. Not one person in all the talk asked anymore about her or my situation. My whole life is underpinned by my feelings and emotions for Bridget and no one seems to get it. I’ve every right to be a miserable old so and so and not join in with the jollity.
I’ve said this before but it’s almost like “ well, Bridget taken care of now and Peter needs to get on with his life and let’s not talk about all that depressing dementia stuff, let’s not spoil the atmosphere with questions about how Peter feels”
But how can anyone who isn’t in this situation even come close to knowing the torment we go through everyday. Am I making far too much of my grief ? Am I guilty of a little wallowing in it?
My daughter I suppose really wants me to be happier for my own sake but how can I NOT be stuck in this grief. That’s why I need counselling for heavens sake! I just get so annoyed that this pushing by others into the background of Bridget’s condition and my situation is acceptable. I wonder if it would be the same if she was in a hospice dying of cancer. That’s cleaner somehow, not grimy like dementia.
I so need people on this Forum who understand this . I’m left with an empty feeling of isolation
Sorry if I say anything that upsets people on here. I might be insensitive at times but I do my best to be mindful of this but I need to say what I feel at the time and this could come from anger, frustration and, of course, grief, which messes with my mind
Hi @Peter11. I understand your frustration with people. Their reaction is nothing personal, it’s just that it is not their problem so they don’t see it the same way as you do. They couldn’t possibly understand the feelings and the love you have for Bridget. Did you ever think of people with dementia until Bridget was diagnosed? None of us ever do as we just get on with living our lives.
We all have one life and we only realize too late that we hadn’t made the most of all we wanted to do.
We are all here to help each other and to pour out our desperately breaking hearts. Love to you Peter. x
What you wrote really resonated with me. I find spending time with other people in any form (except here, sometimes even here though) so lonely. Our entire existence consumed by something they don’t acknowledge or appear to think about… it’s horribly lonely.
I had a bad day yesterday after meeting up with my support bubble family members and they try so hard but I had to cut it short saying could they take me home as I had urgent stuff I’d forgot about to do (crying like a banshee for hours but they didn’t need to know that part!!).
I hope you don’t censor yourself too much. I do it too sometimes too though for fear of upsetting others here.
I woke up early today and sat in the garden gazebo listening to the wind whilst the sun rose (couldn’t see it but thr light got brighter and the birds started coming out).
I’m going for a walk now before too many people are out. I started trying this into my routine this week as I wasn’t leaving the house and the excercise makes me feel better for a bit (brain chemicals). Don’t really know why I bother but since I’m not killing myself I might as well try to make enduring time less unpleasant whilst I’m getting day to day is my logic.
Then I plan to wash my hair (something I used to do every few days but now I can go weeks without doing it… ). And maybe do some jobs… let’s see.
Do you have plans today? If you go and see Bridget or not I hope you can find some small treat or plan to do something for yourself. I hope somehow today there will be some hours of peace from this relentless torture you’re going through. Wish I could say something helpful but there is nothing is there. Please take care and I’m thinking of you and Bridget.
’ve just spent an evening with family watching a movie and for a while I forget Bridget. But they’ve gone home now and my thoughts of Bridget crowd back in and I remind myself with photos of her taken in her care home
My feelings, right at this moment, is seeing someone who I used to know . I don’t remember her touch, her voice, the feel of her hand and the longer this lockdown continues she’ll become a stranger to me and I’ll only have memories to cling to. It’s becoming like she was never here in this house but I have all her clothes and personal stuff to remind me.
I can’t continue for ever like this because every time I visit it’s either she’s asleep or she has little concern for me being there. So what do I do? Any suggestions because I don’t want to lose her but I can’t keep her. She lives in a different world now which is driven by dementia and one where she has forgotten me as her husband.
When we have someone around each day we take for granted their presence, sound and they become us. And when we love we are one.
That’s why I’m a miserable. I do my best to hide it but it festers under the surface constantly.
It’s 22.00, nearly bedtime so at least I know she’ll be in bed and , if asleep , calm and anxiety free.
Peter
Loneliness, what can I say, how can we describe it. It can be imagined by those it hasn’t touched but when we’ve lost someone there are no ideal words. Not even the poets have been able to get into the centre of it. They sometimes come close.
I feel an emptiness and a longing for things to be different but, at the same time, I know nothing will ever be the same, ever. I don’t know about you but I found love and companionship and I’m not sure if anything else could come close. It’s like a big gap that can’t be filled. Perhaps that’s why people experiencing extreme loss come together but it can’t be the same as what was the real thing. I don’t know, I’m rambling!
I think of you and can feel your feelings so please don’t feel you’re alone because you’re not.
Hello @Peter11. Here is a thought for you and all others who are missing the familiarity of loved ones.
What you had in the past was real, and better than anything that can only be imagined in the future.
Love and light. x
Oh dear, I’m all over the place this afternoon. The only comfort I can get now is writing it down. I’m balling my eyes out and I’m so tired of it all. I went to see Bridget this morning and as usual she finds it impossible to relate to me and mirrors a wave and walks away.
what have we done so wrong that we deserve this misery every day? Dementia has taken everything . I just touched a souvenir from our past holiday and it was like an electric current of remembrance when life was good and we just had each other.
And then that leads me on then to other memories of Bridget trying her best to write a card with very limited vocabulary. Such a sad memory of struggling but she still managed to write “you are the lovely man”.
What do we do when we are lonely with our memories and regrets and need immediate comfort? I understand why some just can’t go on anymore but I’m not sure if I’ve got it in me to end it. I still need to be here for her otherwise I’m abandoning her. Who knows what I will do when she dies?
Thank you Peter. I am sorry you are having a particularly bad day today… . I don’t know what the answer is… no one could think badly of you if you reduced the frequency of visits you make in order to try and give yourself a bit more time to look after yourself as best as possible in between to keep yourself as strong as possible for if Bridget does need you.
I also know we can never fill the gap when we had such a deep love. I think the best hope is to be able to enjoy our memories though and maybe tell other people some of our grand old stories which many of us cannot do yet because we are still in the thick of coming to terms with all we’ve lost, your situation particularly… But if we don’t get chance to one day think happy thoughts about the memories who will… i really hope we can all make it to that point…
I was reading an article the other day (actually Bristles it was when I had googled “is it really better to have loved and lost than never to have loved”… so I found it interesting you posted that today… that was an interesting search and bit of reading but I know deep down I will pay whatever price is needed for what I had and wouldn’t go back and not have met him to avoid this pain now).
In this article it was someone pooh pooing that there is such a thing as true love. She had never experienced it and thought it was a fiction. I felt sorry for this woman writing and then I realised I really know it exists but so many people didn’t and don’t believe in it.
It’s funny when I am normally cynical about so many aspects of life (politics, religions…many more) but this I really 100% know it exists. I could tell people like her. And maybe one day I will.
You and many here know it exists too. We need to tell the rest of them if we can because isn’t it sadder for them really. Our lives had meaning to someones soul and their free will even if their body has taken those things away from them and us. We mattered and we need to tell people or write it down because I think less and less people nowadays seem to think it can be like we all had it and isn’t that sad, even worse really. Our story can still exist even if only half of the couple is remembering it but not if we both go.
I hope you are warm and get a good meal of some kind. Take care Peter.
Again, for some random reason, I was very upset this morning. Just the absolute stillness and quiet of the house reminds me how on my own I am. I took the car into get its service this morning. I have to have it otherwise I can’t get to Bridget easily. Buses are rubbish down here. I’m quite good friends with the manager there and he asked after Bridget.
It only takes the smallest of innocent remarks to tip the balance between I’m ok and I’m upset. I was asked “how long has it been now” and I reply 2 years this August. And then he said “ will she be coming home” and my heart dropped, and I said no, not now. So when I drove up to my house I imagined bringing her back , saying “ you’re back home“ walking up the path together and we can start again. But I look to the empty passenger seat where, for so many miles, she would keep me company.
This is a minefield where you never know if you going to step on something that will ruin your day. Trouble is we never know where these minefields are otherwise they could be avoided.