Dementia’s journey

[Dutchman]

Hello everyone. I’m not sure who’s going to pick this up. Just seems I’m leaning on you guys way too much so please forgive a needy person.

I do feel much better generally and I feel issues around my grief and longing are gradually getting better, but there is one thing that stands out still to be resolved, if it ever can be. And I feel it never can be now that Bridget has died. Even back in 2017 onwards she didn’t have the capacity to understand or discuss any issues I had. Conversation in 2019 had gone by that point.

I feel strongly that I’ve been self centred most of my life and this feeling is holding me back from feeling better about the handling the grief . She used to say “You only think of yourself” and “were you like this with your first wife” ( probably). I did a number of things on my own when it would have been more considerate if we’d done things together. I did concentrate on what I liked and, for instance, when I went for a long walk she’d say, “ you know I can’t do that”( she had weak ankles) but I always felt it was my right to do what I wanted. I could’ve considered her more, been understanding and considerate. But I wasn’t.

I know many relationships would have been worse than ours, more selfish perhaps and less loving. But i dwell on this a lot knowing it was upsetting for her and even perhaps a contributing factor to her becoming closer to dementia. I’m told that no one can cause another’s dementia, but surely upsets in a relationship don’t help.

I’ve gone on a bit here. But outside of my counsellor who else could have opinions apart from my friends here.

Sending love to all . Peter

 

[jennifer1967]

Hello everyone. I’m not sure who’s going to pick this up. Just seems I’m leaning on you guys way too much so please forgive a needy person.

I do feel much better generally and I feel issues around my grief and longing are gradually getting better, but there is one thing that stands out still to be resolved, if it ever can be. And I feel it never can be now that Bridget has died. Even back in 2017 onwards she didn’t have the capacity to understand or discuss any issues I had. Conversation in 2019 had gone by that point.

I feel strongly that I’ve been self centred most of my life and this feeling is holding me back from feeling better about the handling the grief . She used to say “You only think of yourself” and “were you like this with your first wife” ( probably). I did a number of things on my own when it would have been more considerate if we’d done things together. I did concentrate on what I liked and, for instance, when I went for a long walk she’d say, “ you know I can’t do that”( she had weak ankles) but I always felt it was my right to do what I wanted. I could’ve considered her more, been understanding and considerate. But I wasn’t.

I know many relationships would have been worse than ours, more selfish perhaps and less loving. But i dwell on this a lot knowing it was upsetting for her and even perhaps a contributing factor to her becoming closer to dementia. I’m told that no one can cause another’s dementia, but surely upsets in a relationship don’t help.

I’ve gone on a bit here. But outside of my counsellor who else could have opinions apart from my friends here.

Sending love to all . Peter

dementia is not caused by issues you may/may not think far enough. she had a choice to marry and stay with you knowing you and your history. if that was the case, then nobody would stand a chance. life is an adventure with all the twists and turns, sometimes we get it right and sometimes get it wrong. if we didnt get some things wrong, how would we know what we got right.

 

[Cerisy]

It’s a difficult one Peter. I’ve been dwelling on our relationship prior to the start of Jo’s dementia, wondering what sort of husband I’ve been - especially as I’m now a gentle control freak as I slowly take over all the things Jo used to do and try to help her cope with her changes. Of course, occasionally, I lose it and immediately regret my response, but can’t remember being like that during our 51 years together. I’ve asked Jo and she was complimentary but how much does she remember? So many factors influence who gets dementia and in Jo’s case it was almost certainly in her genes on the female side.

To be fair what ever happened in the years gone by it’s how we look after our loved one now they really need our help and you did pretty well. Let that be your abiding memory Peter.

Regards, Jonathan

 

[Grannie G]

Hello @Dutchman

I doubt any of us will have lost a spouse without regrets about what we might have done better.

It`s better to realise we were not perfect than not to reflect at all.

What’s done is done.

I think we are allowed to try to forgive ourselves. At least we are aware we were remiss and our failings are on our conscience.

Forgiving ourselves helps us understand we have something to forgive ourselves about.

I’m sure you’re not alone in having regrets.

 

[SherwoodSue]

You have lost your partner and you are grieving. You are casting around for something to attach these strong feelings to.?

You are re running scripts from the past illustrating where you weren’t the perfect husband. Then you imply the feelings you have aren’t justified

You could equally re run scripts from the past where you behaved well ?

 

[sdmhred]

I’m thinking of you and Bridget Peter. We are currently in the waiting land after a stroke and before death. So comforting for me to know others have gone ahead of us. Thank you for recording it as it has helped me.

I wonder about forgiveness. Is this a concept you have thought about or could discuss with your counsellor. Have you asked Bridget for forgiveness for those times you don’t feel you were the best spouse. Could you write a letter, read it to her and then bury it in the ground near her?

This may help you then forgive yourself and be able to free yourself a little. We can’t change the past, we need to accept it and use any thing learned to bring into the future,

 

[Andy54]

@Dutchman,. hello Peter, I don't think that spending time pursuing your own interests is necessarily selfish, as long as you also make time to do things together. In a relationship you are still two individuals each with their own interests and giving each other space to to do that is also important. Yes there may be the odd time when there is perhaps a conflict of interest which leads to an occasional harsh word but I think that is probably typical of most relationships, and as long as it's not causing a major problem all of the time then that would seem to be typical of most relationships. Deb and I always had a very strong and loving relationship but we both frequently spent time focused on our own interests and if there was ever criticism one way or the other it made no difference to our relationship overall. From your many posts on here I don't think that you have any need to reproach yourself in any way.
Best wishes, Andy.

 

[Melles Belles]

@Dutchman in a successful and happy relationship couples do some things together and some activities with friends or on their own. I don’t think it’s healthy to do everything just the two of you. It could get very suffocating . Everyone needs to build their own support network and not just rely on each other. You weren’t wrong to go for long walks. You are still grieving and feeling guilty which is all part of the process. I don’t think you were selfish and you were a very caring husband.

 

[Dutchman]

@Dutchman,. hello Peter, I don't think that spending time pursuing your own interests is necessarily selfish, as long as you also make time to do things together. In a relationship you are still two individuals each with their own interests and giving each other space to to do that is also important. Yes there may be the odd time when there is perhaps a conflict of interest which leads to an occasional harsh word but I think that is probably typical of most relationships, and as long as it's not causing a major problem all of the time then that would seem to be typical of most relationships. Deb and I always had a very strong and loving relationship but we both frequently spent time focused on our own interests and if there was ever criticism one way or the other it made no difference to our relationship overall. From your many posts on here I don't think that you have any need to reproach yourself in any way.
Best wishes, Andy.

Thanks everyone for your supportive replies. I guess when it comes down to it I’m showing the typical results and responses to grieving.

Some days I think I can do this, I can be strong and tough it out. Then I see her picture, remember her as she was prior to the dementia and long to hold her in my arms again and protect her.

But we here know that the grief is so very hard to bear sometimes. It wasn’t so bad when she was in the home as I could visit this person who didn’t know me as her husband but we got along okay. Now she’s gone. And all I want is unreachable.

I don’t have to explain anything to you all because it’s more or less the same for each of us. To know that you understand means a lot. Peter

 

[Dutchman]

When thinking about the past I suppose what can happen is that we see it altered by the way we are now.

When we go day by day, in pre dementia times, life is quite ordinary and we don’t normally analyse each day thinking what we could have done differently. Sometimes it did happen, but we, like most couples, generally just got on with our lives probably thinking that this will go on forever, not for one moment considering that one day things will change dramatically and Bridget would see me as a stranger.

It’s difficult to imagine what “normal “ life was like back then when we discussed stuff, supported and cared for each other, made plans and generally were good friends.

And for me that’s a problem because I can’t “get “ into those moments years ago. I’ve lived alone now for over 5 years and for 4 of those Bridget saw me as stranger, a nice man who visited her in her home. I’ll never underestimate the ordinary couples life doing not much, just being together

 

[Knitandpurl]

They say “you can’t change the past “, but I agree with you @Dutchman , we can and do, it’s how we view it. And sometimes so hard to get past the bad memories to the good. I have no photos around of my Mum in her final years, and very few at all of that time as I deliberately didn’t take any so they are only ones someone else gave me. For many years I had none around of my Dad at all, too painful. Now, must of the time I can remember them the way I want to. Hopefully you will eventually get to this stage with Bridget too.

 

[CAL Y]

They say “you can’t change the past “, but I agree with you @Dutchman , we can and do, it’s how we view it. And sometimes so hard to get past the bad memories to the good. I have no photos around of my Mum in her final years, and very few at all of that time as I deliberately didn’t take any so they are only ones someone else gave me. For many years I had none around of my Dad at all, too painful. Now, must of the time I can remember them the way I want to. Hopefully you will eventually get to this stage with Bridget too.

@Knitandpurl . I so agree with you about photographs.
Just before my husband entered his final stage of life we had a day out on the moors with relatives and some photos were taken.
How I wish I had never seen them.
When you are with a dying person all the time, in some ways you don’t notice how awful they look.
The problem is I now can’t bring myself to delete them. What can you do.🤷‍♀️

 

[jennifer1967]

@Knitandpurl . I so agree with you about photographs.
Just before my husband entered his final stage of life we had a day out on the moors with relatives and some photos were taken.
How I wish I had never seen them.
When you are with a dying person all the time, in some ways you don’t notice how awful they look.
The problem is I now can’t bring myself to delete them. What can you do.🤷‍♀️

could you file them some where so you cant see them but have them for if you want to see them at a later date?

 

[Dutchman]

That’s not a bad idea. Put the upsetting photos somewhere else. Dont delete. Once gone you may regret it. It doesn’t mean we deny what they represent but they’re there should one day in the future we can look at them with a bit more detachment.

In fact while cleaning out a room today I come across one that shows Bridget and me at Christmas in the care home. She looks so lost and vulnerable with me trying to look upbeat and happy.

My comfort comes from knowing that she was treated so wonderfully in the home and probably wasn’t aware of my trying to put on a brave face. Christmas pre dementia was so special and she organised it all. Damn dementia 😩😩😩

 

[CAL Y]

could you file them some where so you cant see them but have them for if you want to see them at a later date?

Thank you. Yes I know exactly where they are so I can avoid them.

 

[Alisongs]

@Knitandpurl . I so agree with you about photographs.
Just before my husband entered his final stage of life we had a day out on the moors with relatives and some photos were taken.
How I wish I had never seen them.
When you are with a dying person all the time, in some ways you don’t notice how awful they look.
The problem is I now can’t bring myself to delete them. What can you do.🤷‍♀️

Print them off, put them in an album. Put the album away. Delete the photos.???

 

[Alisongs]

@Knitandpurl . I so agree with you about photographs.
Just before my husband entered his final stage of life we had a day out on the moors with relatives and some photos were taken.
How I wish I had never seen them.
When you are with a dying person all the time, in some ways you don’t notice how awful they look.
The problem is I now can’t bring myself to delete them. What can you do.🤷‍♀️

Print them off, put them in an album. (You can print and add captions about the details of the day, the place, the people, the positive memories of the day at Boots for example. Positive reinforcement if you are up to it. ) Put the album away.
OR put the photos on a USB stick and put that away.
Then delete the photos.???
Best wishes

 

[Dutchman]

Another Sunday. This is the day Bridget would really get time wrong and im reminded of us both standing outside Morrison at 8.00 waiting for the store to open.

The good memories are diluted by the awful memories of dementia behaviour. Even when things got better when she was calm in the home I was still very upset that she was there and I’d return home to an empty house.

I’m trying really hard to carve out a life for myself but there are times when I’m very lonely and hate the quiet and stillness. The recovering from chemotherapy hasn’t helped because I’m unable to walk great distances which used to use up large parts of my day.

Just rambling thoughts today

 

[Dutchman]

Hi everyone.

Part of me says” oh to hell with it “ ( or something stronger) and just try to shove the hurt and heartbreak of the dementia, Bridget dying and me getting cancer into one corner and forget it for as long as possible.

That’s one method. It works for a while until I look at her struggle with dementia, still able to smile at me, her strength of character coming through and I get angry that it had to happen. All the years of trying to cope with her behaviour, the resignation of acceptance that she didn’t know me for 4 years. How it could have been different, that’s why I get angry.

For years now dementia has affected me and made my life abnormal. I said to myself I’d go to visit her in the woodland burial ground on a weekly basis but my motivation is weak and when you’re on your own anything seems twice as hard to do.

I’ll probably, in time, get on top of all this but it’s a slog, like walking through treacle.

 

[Chizz]

Hi @Dutchman

I apologise if my thoughts upset you.

You said "How it could have been different"
I'm sorry but in my humble view it could not have been different. It was as it was. It was either her genes for dementia or lifestyle, or your genes for your cancer or lifestyle.
What has happened has happened. It's over and done with.
At what or with whom are you angry? Does being angry change anything? Does it help you?
Yes, it could now be different, that is, your view of things could be different, but you are who you are, and so you have reacted as you have reacted.
You had a great relationship with your wife, and thankfully many happy years and memories together. Let those thoughts take centre stage.

I don't know, but I expect your late wife would want you to continue to live your life to the full going forward. That doesn't mean you forget any of the past, but the horrible years is a small percentage of the whole, and that perspective lessens its importance compared with the good years.

My wife had cancer (now in remission), and then dementia and still has dementia and will have until it eventually kills her. I can't find it in me to be angry at her. I'm not angry with an illness. I can't go back and change anything in the past. I've been full time caring for my OH for 7 years now, and for all I know it may be another 7 years or more to go.
All I feel I can do is to deal with what's in front of me and try and make the best of it. I can't change it,
I also had a great relationship with my wife, and thankfully 50 happy years and memories together, that I can recall for which I am truly grateful.