I think that’s very common in carers, especially when they don’t live with the person....my heart used to drop when the phone rang for fear of what had possibly happened.
Dementia’s journey
- Thread starter Dutchman
- Start date
I hope none of you mind me just writing out my thoughts as they come. Everyday brings up new or revisited feelings that we’ve all had in one way or another.
Another evening that I’m going to spend looking at a film to get rid of time then to bed to get rid of the night. I can usually sleep which is a blessing.
I was asked by one of our Alzheimer nurses “what would really make a difference to you feeling so upset, what would it take if we could make it happen?’ Honestly, if I could take away Bridget’s struggle and heartache with dementia, if I could really think that she’s content, well that would help.
But only if I could I would swap, if by some magic, places with her in a heartbeat. Our children and grandchildren need her more than me as she’s always been the family mother. Sure I’d be missed but not as much as she is. That’s why it’s so cruel that dementia took her and not me.
So there you have it. I don’t think I deserve to be the one left behind so it’s a bit similar to survivors guilt. I know this is pie in the sky but when you’re left on your own I think these things.
Thanks again for putting up with my feelings tonight. Peterxxx
Another evening that I’m going to spend looking at a film to get rid of time then to bed to get rid of the night. I can usually sleep which is a blessing.
I was asked by one of our Alzheimer nurses “what would really make a difference to you feeling so upset, what would it take if we could make it happen?’ Honestly, if I could take away Bridget’s struggle and heartache with dementia, if I could really think that she’s content, well that would help.
But only if I could I would swap, if by some magic, places with her in a heartbeat. Our children and grandchildren need her more than me as she’s always been the family mother. Sure I’d be missed but not as much as she is. That’s why it’s so cruel that dementia took her and not me.
So there you have it. I don’t think I deserve to be the one left behind so it’s a bit similar to survivors guilt. I know this is pie in the sky but when you’re left on your own I think these things.
Thanks again for putting up with my feelings tonight. Peterxxx
I meant to ask, has anyone got an answer as to why Bridget would clap on occasion. Twice now I’ve noticed it. First when she was on the trolly in A and E after her fall I suppose as a way of showing her frustration and upset. It was quite a determined clap full of anxiety. And again when I saw her back at the home when she met me at the door.
Is it another way of communicating when she can’t express herself through speech? I found it a bit of a shock to see her do this.
Is it another way of communicating when she can’t express herself through speech? I found it a bit of a shock to see her do this.
Peter, bless you. We would all swop places with our loved ones in a minute but each and everyone of us counts in the eyes of the Lord. No one is any different in His eyes. Your family love you both in equal measures each one of us has our good points and certainly our faults no one person on this planet is any more worthy than the next. Be calm Peter, content in the knowledge that tomorrow is another day, you still have Bridget and that in itself is a blessing. You are you, made in the image of the Lord go forward into the next day and the next content you are unique and special in the Lord’s heart. Prayers for you and everyone xx
"Good news. Went to the home this afternoon and Bridget is walking and talking and smiled at me. What a absolute relief."
That is what you said yesterday Peter. But Today you said
" if I could take away Bridget’s struggle and heartache with dementia, if I could really think that she’s content, well that would help."
Do you see the contradiction there? From what you have told us over recent weeks, it seems clear that Beatrice IS content, well settled and happy in her care home, and has the blessing that she will have forgotten the trauma of the hospital visit already, will not be worried about it happening again, You say you want to change places with her - BUT and it is a big BUT - If you did change places, then YOU would be the contented, well looked after one, while Beatrice would be 'home alone' missing you all day and night, worrying and fretting, suffering terrible anxieties, fearing what the future will bring.
You have done every possible thing to ensure your Wife's safety, comfort and contentment, though it has cost you dearly in terms of your own peace of mind. No man could have loved and done more - you have literally sacrificed your own life and chance of happiness to meet her needs. I so wish that you could realise this and see yourself as the hero that you are.
That is what you said yesterday Peter. But Today you said
" if I could take away Bridget’s struggle and heartache with dementia, if I could really think that she’s content, well that would help."
Do you see the contradiction there? From what you have told us over recent weeks, it seems clear that Beatrice IS content, well settled and happy in her care home, and has the blessing that she will have forgotten the trauma of the hospital visit already, will not be worried about it happening again, You say you want to change places with her - BUT and it is a big BUT - If you did change places, then YOU would be the contented, well looked after one, while Beatrice would be 'home alone' missing you all day and night, worrying and fretting, suffering terrible anxieties, fearing what the future will bring.
You have done every possible thing to ensure your Wife's safety, comfort and contentment, though it has cost you dearly in terms of your own peace of mind. No man could have loved and done more - you have literally sacrificed your own life and chance of happiness to meet her needs. I so wish that you could realise this and see yourself as the hero that you are.
I want to thank all you wonderful people for all your loving advice and support and putting up with my constant toing and froing of emotions. Dementia in Bridget has completely changed my capacity to cope as i’ve always been pretty able to handle most things.
I’ve been somewhat selfish in that i’ve concentrated on my own diverse feelings always hoping there was someone who could provide a small piece of comfort. You have all done this 100% and i thank you all from the bottom of my heart.
So i’m going to try and ease off and go over all that you’ve said to me and hopefully i’ll calm down. Perhaps even try to help others with any experience of i’ve had of this terrible and cruel disease.
Bridget is well looked after, i’m fortunate that she’s in a good home. i need to concentrate on that. It’s me that’s a mess sometimes and i hate being like this
all my love to you , peter
I’ve been somewhat selfish in that i’ve concentrated on my own diverse feelings always hoping there was someone who could provide a small piece of comfort. You have all done this 100% and i thank you all from the bottom of my heart.
So i’m going to try and ease off and go over all that you’ve said to me and hopefully i’ll calm down. Perhaps even try to help others with any experience of i’ve had of this terrible and cruel disease.
Bridget is well looked after, i’m fortunate that she’s in a good home. i need to concentrate on that. It’s me that’s a mess sometimes and i hate being like this
all my love to you , peter
I so feel it would be a huge help to Dutchman if he could just see himself as a good and caring man who has been dealt the horrendous blow of a soul mate with dementia. we all know the torture of looking for a glimmer and translating it. But Dutchman doesn't need to feel guilty, it's truly heart breaking, but how to help him? It' seems to be of concern to the care home too, they can obviously see his pain and even they, who must be used to it, can't offer a solution. Only Dutchman can tackle this and having jettisoned his counsellor he is going it alone and is even more vulnerable. Lirene comforts Dutchman but I do wonder if is this a case of' sackcloth and ashes' Lireen, atoning for his 'sin' in allowing Bridget to go into a care home.. You seem to be able to offer Dutchman solice and comfort through your faith though Lirene, I hope it helps him.
Bless you Peter, I respect your decision but have to say I think you are wrong. We who have listened to your outpouring of emotions and feelings which have come from the very depths of your soul cannot pass by on the other side. We cannot turn our heads and ignore one of our own in their hour of desperation. You cannot just bottle up your feelings in the hope you alone can make them go away, because I don’t think you can. On our site you can unburdened every thought and feeling we are not here to shout or tell you what to do, we are not here to pass judgment or to say what is right or wrong but we are here as your anonymous sounding board. You are able to post every feeling you have, scream, shout and cry out loud and someone will answer. Shutting out your online community is shutting out the world and that certainly is not the answer.
The Lord made you in his image and gave you a life to live as well as you are able under every circumstance. You were not put on this earth for no reason you have Bridget and need strength to keep her going, you have family and grandchildren and you need to keep strong for them, to see them grow and give them their direction in life. The Lord has given you this life Peter, don’t waste it, go forward give all you possibly can and more. Don’t feel you have to keep posting but on a personal note I really do need to hear how you are and how Bridget is. You are an online family member and for you to just disappear would leave us all just wondering if we could have done more. Just talk to us when you feel the need - we are always here by your side. May the Lord lift and comfort you, he will help you - just reach out to him. My prayers and love are for you and Bridget and I will help all I can xx
The Lord made you in his image and gave you a life to live as well as you are able under every circumstance. You were not put on this earth for no reason you have Bridget and need strength to keep her going, you have family and grandchildren and you need to keep strong for them, to see them grow and give them their direction in life. The Lord has given you this life Peter, don’t waste it, go forward give all you possibly can and more. Don’t feel you have to keep posting but on a personal note I really do need to hear how you are and how Bridget is. You are an online family member and for you to just disappear would leave us all just wondering if we could have done more. Just talk to us when you feel the need - we are always here by your side. May the Lord lift and comfort you, he will help you - just reach out to him. My prayers and love are for you and Bridget and I will help all I can xx
Again I thank you from my heart that you are wanting to keep listening to my outpourings. At the moment I’m ok because Bridget seems ok after her hospital ordeal. Like most of us , if they’re ok then we’re ok ( up to a point)
I wouldn’t want to give the impression that I don’t want your support. I just feel awkward sometimes that I’m hogging the forum with every twist and turn of my dementia journey. Anyway, bless you all for letting me feel I can post freely.
At the moment things seems to be on an even keel at the home and I get comfort from that.
God bless you all and loving kindness to everyone
Peter
I wouldn’t want to give the impression that I don’t want your support. I just feel awkward sometimes that I’m hogging the forum with every twist and turn of my dementia journey. Anyway, bless you all for letting me feel I can post freely.
At the moment things seems to be on an even keel at the home and I get comfort from that.
God bless you all and loving kindness to everyone
Peter
As you all probably know I’ve read many books on what we’re all going through. Not all are useful . In fact some I’ve just thrown across the room.
But I’m reading one now which seems to a comfort and extremely helpful and I hope it is, in some way, is the same for many of us on our dementia journey.
“ The Empty Bed” by Susan Wallbank a Cruse counsellor since 1978. ( quote) “Both the practical and emotional difficulties are explored in depth”
Bless you all, Peter
But I’m reading one now which seems to a comfort and extremely helpful and I hope it is, in some way, is the same for many of us on our dementia journey.
“ The Empty Bed” by Susan Wallbank a Cruse counsellor since 1978. ( quote) “Both the practical and emotional difficulties are explored in depth”
Bless you all, Peter
I too feel very lonely at the moment and i can’t put my finger on why, in particular, today. I suppose it’s the accumulation of many little things and the combination of many grief feelings that i can’t come to terms with.
I don’t think i’ve lived one day since my wife left and went into the care home that i haven’t agonised over why, why us , why me, loads of regrets, loads of what ifs. You know, usual stuff.
I just don’t see an end to this and , on one hand i’d want it to stop, and it would if my wife died, but then i want her still around because i love and miss her so. What a mess! She doesn’t miss me at all as she doesn’t recognise me as her husband but i still hang on to the past and some resemblance of what she was to me before dementia. It’s torture every time i see her and then again when i come home to this empty house.
Keep posting please
I don’t think i’ve lived one day since my wife left and went into the care home that i haven’t agonised over why, why us , why me, loads of regrets, loads of what ifs. You know, usual stuff.
I just don’t see an end to this and , on one hand i’d want it to stop, and it would if my wife died, but then i want her still around because i love and miss her so. What a mess! She doesn’t miss me at all as she doesn’t recognise me as her husband but i still hang on to the past and some resemblance of what she was to me before dementia. It’s torture every time i see her and then again when i come home to this empty house.
Keep posting please
With you Peter. I’m lonely too, I think so many of us have this soul loneliness and it is torture for us. It’s all about getting through another day but not sure towards what ...
All we can do is be together and on here is a good place to be. Thank you for staying with us.
Love Gx
Hello Kindred and good morning. I’m back in bed with a cuppa and biscuits ( nice and warm and a bit of a retreat) .
Yesterday was such a lousy day for the weather so it heightened my depressed mood. I also had to drive some distance to my daughters home and being on my own in the car always gets me thinking. You know, little things Bridget said when she was at home that i could of taken more notice of and been more attentive to her needs so i rerun what i could, should and ought to have done. Gets us nowhere i know these thoughts won’t leave me alone.
I hope we both have a reasonable day. I forget it’s lockdown a lot as all the wretched feelings of grief are trumping national problems.
Thinking of you
Peter
Yesterday was such a lousy day for the weather so it heightened my depressed mood. I also had to drive some distance to my daughters home and being on my own in the car always gets me thinking. You know, little things Bridget said when she was at home that i could of taken more notice of and been more attentive to her needs so i rerun what i could, should and ought to have done. Gets us nowhere i know these thoughts won’t leave me alone.
I hope we both have a reasonable day. I forget it’s lockdown a lot as all the wretched feelings of grief are trumping national problems.
Thinking of you
Peter
Yes it’s me again. No matter how hard i try, no matter how much i don’t want to, i’m still coming back here with terrible thoughts and feelings.
I had planned to go to see Bridget tomorrow but something inside me said i needed and wanted to see her this evening and i’ve just arrived back home. When i arrived at her home i saw her through the window walking across the lounge looking disorientated and vague and now looking so much older in her manner and i immediately thought “ i did that, i put you here, it’s my fault” . And no matter what’s drummed into me in the form of logic and being realistic i can’t shift from believing that it’s my fault.
This vascular dementia caused by strokes can happen at any time I’m told but who’s to say my manner, selfishness, just being like i was didn’t increase the chances of Bridget getting it. After all, its called a disease but Bridget didn’t catch it like chicken pox, the dementia was caused by strokes brought about by any number of factors and one of those could have been me.
i wish i could wake up one morning and not feel this way. And i want comfort and the only one that could give that real comfort and reassurance cannot give it to me anymore so i’m left wanting when i leave the home. So i go in the hope of doing what i can for her sake, for a moment of joy in her face when she sees the flowers and fruit. I tend to live for those moments.
Peter
I had planned to go to see Bridget tomorrow but something inside me said i needed and wanted to see her this evening and i’ve just arrived back home. When i arrived at her home i saw her through the window walking across the lounge looking disorientated and vague and now looking so much older in her manner and i immediately thought “ i did that, i put you here, it’s my fault” . And no matter what’s drummed into me in the form of logic and being realistic i can’t shift from believing that it’s my fault.
This vascular dementia caused by strokes can happen at any time I’m told but who’s to say my manner, selfishness, just being like i was didn’t increase the chances of Bridget getting it. After all, its called a disease but Bridget didn’t catch it like chicken pox, the dementia was caused by strokes brought about by any number of factors and one of those could have been me.
i wish i could wake up one morning and not feel this way. And i want comfort and the only one that could give that real comfort and reassurance cannot give it to me anymore so i’m left wanting when i leave the home. So i go in the hope of doing what i can for her sake, for a moment of joy in her face when she sees the flowers and fruit. I tend to live for those moments.
Peter
Hi, will try The empty bed, am so lonely too. will try any thing , Thankgod I might get to see MH in his later stages of dementia,I hope! Never none sadness like this. X
