Dementia’s journey

[Dutchman]

Hi there everyone, me again. Just spent a weekend with our daughter and family. Home now.

No matter how much you’re surrounded by love ones and those that wish you well, when i drive home with an empty passenger seat it hits me hard that I’m lonely and hurting for Bridget.

This is especially difficult because while she was alive I would detour from going home and go see her in the home. It’s the absence of talking about our weekend, making little plans and looking forward to doing nothing together which meant so much to us. You can surround yourself with family and friends but it’s that special person that just wants you because of the relationship built up over years.

 

[maisiecat]

Hi there everyone, me again. Just spent a weekend with our daughter and family. Home now.

No matter how much you’re surrounded by love ones and those that wish you well, when i drive home with an empty passenger seat it hits me hard that I’m lonely and hurting for Bridget.

This is especially difficult because while she was alive I would detour from going home and go see her in the home. It’s the absence of talking about our weekend, making little plans and looking forward to doing nothing together which meant so much to us. You can surround yourself with family and friends but it’s that special person that just wants you because of the relationship built up over years.

Hi @Dutchman, it is very sad and it is about the sharing of news and titbits about family and friends. Sometimes its when I am with other people I am most lonely.
Take care

 

[Dutchman]

I post on here and keep going round in circles. I guess that’s the nature of grieving.

I beat myself up thinking I could’ve done more for Bridget when she was at home. She became confused and frightened and I didn’t know how to manage especially when she refused to recognise me as her husband. I retreated into self protection mode and couldn’t give the understanding and compassion she probably wanted.

In the care home she repeatedly begged me to take her out and, if it hadn’t been for the imposed isolation of those Covid years, it would’ve been worse going inside and her pulling me towards the door.

I hurt because of her hurting. I cry because I can’t go see her now and, even though she couldn’t have understood, I could say sorry.

Do you think the guilt ever goes away? I’m not so sure. I just want to be at peace with all of this and come to some sort of acceptance that I can live with.

Peter

 

[maisiecat]

I post on here and keep going round in circles. I guess that’s the nature of grieving.

I beat myself up thinking I could’ve done more for Bridget when she was at home. She became confused and frightened and I didn’t know how to manage especially when she refused to recognise me as her husband. I retreated into self protection mode and couldn’t give the understanding and compassion she probably wanted.

In the care home she repeatedly begged me to take her out and, if it hadn’t been for the imposed isolation of those Covid years, it would’ve been worse going inside and her pulling me towards the door.

I hurt because of her hurting. I cry because I can’t go see her now and, even though she couldn’t have understood, I could say sorry.

Do you think the guilt ever goes away? I’m not so sure. I just want to be at peace with all of this and come to some sort of acceptance that I can live with.

Peter

Hi @Dutchman ,grief is a long drawn out process and can be very overwhelming. Do you have anyone you can talk to ? I remember you are still going to visit Bridget's care home so I wonder if they have any contacts that could help. Dealing with grief is something they are very used to as they see the grief we have as we have to accept the changes to our person and then the final grief.
I understand how you feel about feeling you weren't able to do enough, I feel like that about my husband who superficially can come across as quite ok but I know he is quite ok because a team of people deal with him and sooth all his anxieties. Its hard to know someone else can do a better job than you.
So many of us on here deal with the enormous guilt we feel but we do our best and thats all we can do and the people we love and who loved us wouldn't ask for more.
Take care, be kind to yourself.

 

[Donna Kebab]

I post on here and keep going round in circles. I guess that’s the nature of grieving.

I beat myself up thinking I could’ve done more for Bridget when she was at home. She became confused and frightened and I didn’t know how to manage especially when she refused to recognise me as her husband. I retreated into self protection mode and couldn’t give the understanding and compassion she probably wanted.

In the care home she repeatedly begged me to take her out and, if it hadn’t been for the imposed isolation of those Covid years, it would’ve been worse going inside and her pulling me towards the door.

I hurt because of her hurting. I cry because I can’t go see her now and, even though she couldn’t have understood, I could say sorry.

Do you think the guilt ever goes away? I’m not so sure. I just want to be at peace with all of this and come to some sort of acceptance that I can live with.

Peter

Have you tried writing her a letter? It can sometimes help to get everything you wanted/want to say down on paper; The trouble you had when she stopped recognising you, why you couldn't bring her back from the care home, how much you are hurting and how sorry you are for all the things you may have got wrong. Doesn't matter how long or short it is, just let out everything you need to get off your chest. Take the letter with you when you visit her grave, read it to her and tell her how much you love her and ask her forgiveness, then bury the letter in the grave along with the guilt, because you two seemed to have a rare and precious love for each other, and with that comes an almost automatic forgiveness.

 

[Dutchman]

Have you tried writing her a letter? It can sometimes help to get everything you wanted/want to say down on paper; The trouble you had when she stopped recognising you, why you couldn't bring her back from the care home, how much you are hurting and how sorry you are for all the things you may have got wrong. Doesn't matter how long or short it is, just let out everything you need to get off your chest. Take the letter with you when you visit her grave, read it to her and tell her how much you love her and ask her forgiveness, then bury the letter in the grave along with the guilt, because you two seemed to have a rare and precious love for each other, and with that comes an almost automatic forgiveness.

Thank you everyone for the constructive comments

I’ve been told before that the letter thing is a good idea. Perhaps I’ll try that. I’m going up to the grave this afternoon.

The staff in her home are friendly and I could talk to them. Just to confirm how content she was during the last 3 years she was with them.

Thank you. Peter

 

[Dutchman]

Thank you everyone for the constructive comments

I’ve been told before that the letter thing is a good idea. Perhaps I’ll try that. I’m going up to the grave this afternoon.

The staff in her home are friendly and I could talk to them. Just to confirm how content she was during the last 3 years she was with them.

Thank you. Pete

 

[Dutchman]

I’ve visited the grave today just before it fell down with rain. Stayed about 30 mins.

Being a woodland burial ground and very overgrown at the moment I panicked because I couldn’t find her. I literally dissolved into tears at losing her all over again. Eventually I found her and calmed down, sat next to the mound, got out the letter I’d written and placed into a hole dug out of the side. ( you’re not supposed to alter the original mound but I’m sure I’m not the only one).

Sitting next to her grave is the closest I’m ever going to get to her, and I know it’s just her remains, but somehow I fool myself into thinking I’m close and she knows. Is that weird? Is it healthy? I don’t really know. But I need to do it like I need to look at her photos. It’s a grieving drug and I’m an addict.

 

[Dutchman]

I get to thinking about Bridget around this time of day as the day finishes. You would expect by now that I would have calmed down a bit and the hurt would have lessened a little. It’s difficult to put into words sometimes. I just keep going round in circles.

I look at the photos I have of her in the care home and in the hospital recovering from her fall and they upset me. But they also show her smiling when she looks at me, so why am I not glad she seems happy. I guess that’s what I miss so much that I can’t share those moments anymore.

You’d also expect that I’d be glad she was well looked after in the care home. But it increased the feeling that I’d like that in our home back together.

I know little of this makes sense and i ought to be more accepting of the reality of the situation but when you miss someone so much the photos and little videos are both the nearest I’ll get to her but remind me of what I’ve lost. She couldn’t talk and I hang on to the rare odd word she could say. I treasure her voice.

Her final moments were quick. Big stroke and sedated in hospital for 10 days. I think that was better than lingering over weeks and months. But I always wanted her to be around in the home for me to visit. Again, unrealistic.

 

[SherwoodSue]

Thinking of you and sending kind thoughts x

 

[Chizz]

I get to thinking about Bridget around this time of day as the day finishes. You would expect by now that I would have calmed down a bit and the hurt would have lessened a little. It’s difficult to put into words sometimes. I just keep going round in circles.

I look at the photos I have of her in the care home and in the hospital recovering from her fall and they upset me. But they also show her smiling when she looks at me, so why am I not glad she seems happy. I guess that’s what I miss so much that I can’t share those moments anymore.

You’d also expect that I’d be glad she was well looked after in the care home. But it increased the feeling that I’d like that in our home back together.

I know little of this makes sense and i ought to be more accepting of the reality of the situation but when you miss someone so much the photos and little videos are both the nearest I’ll get to her but remind me of what I’ve lost. She couldn’t talk and I hang on to the rare odd word she could say. I treasure her voice.

Her final moments were quick. Big stroke and sedated in hospital for 10 days. I think that was better than lingering over weeks and months. But I always wanted her to be around in the home for me to visit. Again, unrealistic.

Hi @Dutchman
I think I know how you feel, as I have similar feelings of loss with regard to my OH, who is in the next room!
I can't really help her, other than to make her comfortable, feed her etc. We can't really communicate with each other any more, but I do have her here to hold her hand and kiss her cheek. This also heightens my feeling of loss and grief.
I'm just thankful for the 50 odd happy years we had before dementia descended on us.
You too must think of the happy times you two had and be thankful. Not all couples are as happy or close.
You can't change the past. There really is no gain in the "what if..." thoughts. They cannot be constructive.
Best wishes

 

[lollyc]

@Dutchman , It is now more than 2 years since Mum died. I don't have pictures of the dementia years, but I cannot bear to look a photos pre dementia, because it reminds me of all that is lost. Perhaps I'm just a coward, but maybe don't look at the photos for a while if it causes you so much distress? They will still be there when you need them.
@Chizz is absolutely right , we cannot change what has happened however hard we try, all we can do is know we made the best of an unbearable situation, even if we got it wrong sometimes.

 

[Dutchman]

@Dutchman , It is now more than 2 years since Mum died. I don't have pictures of the dementia years, but I cannot bear to look a photos pre dementia, because it reminds me of all that is lost. Perhaps I'm just a coward, but maybe don't look at the photos for a while if it causes you so much distress? They will still be there when you need them.
@Chizz is absolutely right , we cannot change what has happened however hard we try, all we can do is know we made the best of an unbearable situation, even if we got it wrong sometimes.

I’ve just done some rearranging of pictures for the wall. It has meant that again I see close up the photos of Bridget before dementia.

It’s a weird feeling and difficult to put into words. It’s almost like she’s still in the world, just somewhere that I can’t get to. I remember each photo and where we were and how she enjoyed just being with me and I with her. Dementia made me a stranger.

Each photo reminds me what I don’t have anymore and the longing to have her with me again is heartbreaking. Facing up to reality is so difficult and I’ve been told I’m a bit too sentimental over things but I can’t be hard and tough it out, it’s not in my nature. Also, I spoken to some who find they can’t share, keep it all to themselves and put a brave face to the world.

I think dementia makes everything worse as I lost Bridget twice, suddenly looking around for “me” and eventually she dies.

It’s not fair is it!

 

[maisiecat]

I’ve just done some rearranging of pictures for the wall. It has meant that again I see close up the photos of Bridget before dementia.

It’s a weird feeling and difficult to put into words. It’s almost like she’s still in the world, just somewhere that I can’t get to. I remember each photo and where we were and how she enjoyed just being with me and I with her. Dementia made me a stranger.

Each photo reminds me what I don’t have anymore and the longing to have her with me again is heartbreaking. Facing up to reality is so difficult and I’ve been told I’m a bit too sentimental over things but I can’t be hard and tough it out, it’s not in my nature. Also, I spoken to some who find they can’t share, keep it all to themselves and put a brave face to the world.

I think dementia makes everything worse as I lost Bridget twice, suddenly looking around for “me” and eventually she dies.

It’s not fair is it!

No its not fair but its the price that we pay for a great love. Those of us that feel it have been privileged to have enjoyed that with our soulmate.

 

[Dutchman]

Morning everyone. I’m at that stage where I question everything.

Do I long for her just because I feel lonely without her? Did we really have an okay marriage or do I remember the past through rose coloured glasses? Did she love me or tolerate me?

The heartache I feel is divided between missing her and knowing the struggle she experienced in those dementia years. I cared for her as best I could with ordinary limitations. I never once thought about how it affected me coping with the bizarre behaviour and now I have all this time to consider this.

We all want to be kind to ourselves ( it’s strongly advised by all professionals) but it’s so difficult trying this when caught in the merry go round of emotions. The big stick of guilt, ifs and buts whacks us all the time.

I’m hoping that with time I can just accept what happened and know that it couldn’t have been any different, dementia will alway have the upper hand and you’ll never cope effectively on your own.

Anyway, that’s my thoughts for today. My diversion today is a film tonight at our local cinema. Even though the chemotherapy has made it a struggle to get up the steep high street

 

[Chizz]

Thanks for your post @Dutchman.
You said " I cared for her as best I could with ordinary limitations." This says it all - you did your best, and thus, could do no more. We all have own limitations too.
In MHO, you need more activities and more social interactions in your life to occupy your body and mind!
Best wishes

 

[Dutchman]

It’s a sad fact that the way we are are with the heartbreak, grief in all its ways, the sudden tears and longing, are all because we loved someone so much that we want them back to make our lives whole again.

I feel very much that why wouldn’t I feel so wretched some times? After all, I’ve lost my wife who was my love and companion, I’ve been left on my own, I’m getting over chemotherapy, the days are empty and quiet, and I could go on.

I just want to ask that we recognise that what we’ve gone through and still go through is alien to many couples. We are going through the awfulness of bereavement and it’s normal that we feel so bad. I felt my life was over and what was the point!

So every day is a struggle but it’s obvious why. It can’t be otherwise and for me it helps to know that I’m living inside abnormal circumstances.

 

[GillP]

It’s a sad fact that the way we are are with the heartbreak, grief in all its ways, the sudden tears and longing, are all because we loved someone so much that we want them back to make our lives whole again.

I feel very much that why wouldn’t I feel so wretched some times? After all, I’ve lost my wife who was my love and companion, I’ve been left on my own, I’m getting over chemotherapy, the days are empty and quiet, and I could go on.

I just want to ask that we recognise that what we’ve gone through and still go through is alien to many couples. We are going through the awfulness of bereavement and it’s normal that we feel so bad. I felt my life was over and what was the point!

So every day is a struggle but it’s obvious why. It can’t be otherwise and for me it helps to know that I’m living inside abnormal circumstances.

I think that those of us who have lost our loved one get what you are going through. Personally, I think that our grief will always be a part of us. It changes us but we need to find some hope, some joy in life and learn to live with it. I have joined an online community for widows and widowers and have found it helpful. I still cry most days but the pain is no longer visceral and I am trying to forge ahead, to live not exist. So currently I am enjoying tackling a much neglected garden and if it rains I am slowly declutterring the house. I am rattling around here and plan to move in the next year or so. I also will have a holiday late summer. I know not everything will go to plan but I hope I have the resilience to adjust.

You mention that you are still recovering from your chemotherapy. That takes it out of you and you need to give yourself time to heal physically.

Thinking of you and wishing you strength.

 

[Dutchman]

I think that those of us who have lost our loved one get what you are going through. Personally, I think that our grief will always be a part of us. It changes us but we need to find some hope, some joy in life and learn to live with it. I have joined an online community for widows and widowers and have found it helpful. I still cry most days but the pain is no longer visceral and I am trying to forge ahead, to live not exist. So currently I am enjoying tackling a much neglected garden and if it rains I am slowly declutterring the house. I am rattling around here and plan to move in the next year or so. I also will have a holiday late summer. I know not everything will go to plan but I hope I have the resilience to adjust.

You mention that you are still recovering from your chemotherapy. That takes it out of you and you need to give yourself time to heal physically.

Thinking of you and wishing you strength.

Thank you so much for taking the time to reply.

It’s so very easy to think about the times when I think I could’ve done better or differently. But it’s all with the value of hindsight not allowing for what it was like being in the thick of it when I wasn’t coping at all.

I find I’m suddenly welling up over memories of her struggling with dementia. That’s what upsets me most of all is this deterioration and degrading state she was in. I’m sure she felt undignified by it all even with her feeling and emotions altered by the dementia. We try to shield our love ones from hurt and upset but we can never win with dementia.

 

[Melles Belles]

@Dutchman
i think we all think we could have done better when looking after our PWD.
Maybe quite often we could have done better especially in the early stages when we didn’t understand/realise that they had dementia and we find the behaviour frustrating .
One of my husband’s relations used to tell his mother off for lying and hiding things deliberately. We kept telling him that his mum might have dementia but he just wouldn’t listen. Eventually the mother was diagnosed but he has rewritten history and now say he knew all along. Hmmm.