Dementia’s journey

[Dutchman]

Just woke up distressed, again.

Every night now I have dreams of loss. In one form or another Bridget is leaving me for someone else and she’s quite matter of fact about it. And these are men I know and I tell her they won’t love her as much as I can. But she’s determined to go and I’m left alone. She gives all sorts of reasons why she’s going but I know she’ll be unhappy without me.

I wonder if this is normal and is specifically related to dementia losses. It’s bad enough in the cold light of day but there’s no escape in sleep.

Peter

 

[kindred]

Just woke up distressed, again.

Every night now I have dreams of loss. In one form or another Bridget is leaving me for someone else and she’s quite matter of fact about it. And these are men I know and I tell her they won’t love her as much as I can. But she’s determined to go and I’m left alone. She gives all sorts of reasons why she’s going but I know she’ll be unhappy without me.

I wonder if this is normal and is specifically related to dementia losses. It’s bad enough in the cold light of day but there’s no escape in sleep.

Peter

I am so sorry Peter, I have nightmares too. It’s awful having no escape. You are going through hell and I am grateful that you write about it and so many of us identify. It’s more than loss of the love of our lives, it’s the manner of the loss. Torment. All sympathy.
With love Kindred

 

[Dutchman]

Thanks Kindred. Kind of you to reply so quickly
Peter

 

[blackmortimer]

Just woke up distressed, again.

Every night now I have dreams of loss. In one form or another Bridget is leaving me for someone else and she’s quite matter of fact about it. And these are men I know and I tell her they won’t love her as much as I can. But she’s determined to go and I’m left alone. She gives all sorts of reasons why she’s going but I know she’ll be unhappy without me.

I wonder if this is normal and is specifically related to dementia losses. It’s bad enough in the cold light of day but there’s no escape in sleep.

Peter

I can't say if it's "normal" (what is?) but I certainly have vivid dreams in which Margaret features and which are troubling but don't make much sense in the cold light of day. I am no expert, but wonder if these sorts of dreams are the sleeping brain trying to make some sort of sense of everything that's going on. If so, one would like to think that they would become less troublesome as time goes on. Who knows?
It's all part of the searing sense of separation that dementia brings, coupled with all the guilt and "if onlys" that besiege one's mind. Try and take comfort from the fact that you're not alone.

God bless,

 

[Dutchman]

You know when others are advise not to say certain things like” l know how you feel” , “time heals”, “ will you move house”, “she wouldn’t want you to feel this way” and loads of other well meant comments, well at least on this Forum we all understand each other and we really do know “how it feels”.

I write here to unload and very gradually make some sense of my loss. Today, I’m fed up, miserable. Easter 2019 she failed to acknowledge me as her husband and looked everywhere for me. My poor love was so upset and in pieces because she couldn’t find me. I lost my temper shouting “I’m here, damn it” and cried my heart out knowing it was probably the final straw. So today brings it all back
My love to you all

Peter x

 

[kindred]

You know when others are advise not to say certain things like” l know how you feel” , “time heals”, “ will you move house”, “she wouldn’t want you to feel this way” and loads of other well meant comments, well at least on this Forum we all understand each other and we really do know “how it feels”.

I write here to unload and very gradually make some sense of my loss. Today, I’m fed up, miserable. Easter 2019 she failed to acknowledge me as her husband and looked everywhere for me. My poor love was so upset and in pieces because she couldn’t find me. I lost my temper shouting “I’m here, damn it” and cried my heart out knowing it was probably the final straw. So today brings it all back
My love to you all

Peter x

With you in spirit, Peter, and thank you as always for your post. Yes, that’s the blessing of this forum. We all really do get it. That is such a heartbreaking episode you describe.
I’m struggling with grief and wonder if you or anyone feels that the grief does not go away even in the distracting company of others
Warmest, Kindred

 

[None the Wiser]

@Dutchman Today I went into the garden looking at flowers he will never see (hubby in hospital awaiting assessment for care home) and I thought 'now I understand how Dutchman feels'.

Previously I was continuing in my role getting more and more exhausted, and some days I shouted at hubby when he wanted me to 'take him home' at 11pm at night. And I just didn't cuddle him enough, or tell him I love him enough, etc etc. Now it's too late. Now I must live through my guilt and weep the tears he will never see.

I do understand you Dutchman, because I am suffering with you.

Well said @Old Flopsy, I completely agree.

 

[Dutchman]

Do we ever get over the grief we feel? Probably not, but I’ve said before it’s the glue that keeps us close to our loved one. We want it and we don’t want it.

Yes you’ve guessed it, I’m crying my eyes out because I remember Bridget sitting with me in normal times comforting me and saying “it’s ok sweetie, it’ll be ok, please don’t cry”. And we’d hug and kiss and it would be all right.

But now it’s not all right and I’m lonely and I have to do all the visiting on my own and my family hardly ever call and when they do I have to prompt them to ask about mum. It’s like it’s all sorted now and let’s all get on with our lives. And I’m lonely not only because I’m on my own ( that’s bad enough) but it’s also because the one person that once gave me all her love and comfort doesn’t recognise me. So I’m stranded and abandoned.

Needed to unload again

Peter x

 

[Old Flopsy]

Yes Peter I understand totally.

Oh I hate bank holidays now- everybody else seems to be enjoying life, and I'm not.

I think I need a glass of wine in the vain hope of dropping asleep tonight!

All for now Peter, back tomorrow.

 

[None the Wiser]

Keep posting @Dutchman and @Old Flopsy. It’s so so important to tell it as it is.
I‘m with you in my own nightmare!

 

[blackmortimer]

Do we ever get over the grief we feel? Probably not, but I’ve said before it’s the glue that keeps us close to our loved one. We want it and we don’t want it.

Yes you’ve guessed it, I’m crying my eyes out because I remember Bridget sitting with me in normal times comforting me and saying “it’s ok sweetie, it’ll be ok, please don’t cry”. And we’d hug and kiss and it would be all right.

But now it’s not all right and I’m lonely and I have to do all the visiting on my own and my family hardly ever call and when they do I have to prompt them to ask about mum. It’s like it’s all sorted now and let’s all get on with our lives. And I’m lonely not only because I’m on my own ( that’s bad enough) but it’s also because the one person that once gave me all her love and comfort doesn’t recognise me. So I’m stranded and abandoned.

Needed to unload again

Peter x

I know how you feel, Peter. My children are similar - but remember they have their own busy lives and families whilst for us who are left alone with our guilt and our memories it's as though time is suspended. Do you remember the funeral scene in "Four weddings and a Funeral"? There was poem with the line "stop all the clocks", I think maybe by Auden, which sums up how I feel exactly. The irony is I suppose that no matter how grief stricken you may be at a funeral at least you know deep down that the time will come to move on whereas with dementia it's not like that. Who knows how long and you can't move on. I rang the nursing home yesterday and there was good news and bad news (isn't it always like that?). Margaret's infection has cleared up, thanks to the antibiotics and she's eating a lot more normally (she had been losing weight) but when they passed the phone to her she didn't seem to recognise me and said nothing coherent although she did sound a bit drowsy so perhaps that's it - one can only hope'

Try to stay positive, Peter. At least you're among friends here!

God bless,

 

[Dutchman]

Yes I do feel close to people who do understand exactly. Sometimes, when I’m really upset, I just don’t know where it’s comes from. It could a picture, a remembering of her voice, but usually it comes from nowhere and that’s not controllable and it means you can’t avoid that which upsets you.
I’m so glad @blackmortimer that Margaret is better now. Bridget coherency is better some days than others and it will be the same with Margaret I’m sure. Phone calls have always been a challenge for Bridget. I think it’s because they need to see the person properly.
I’m tired now ( went out for a long walk) and I’ll go to bed soon.
Bless you
Peter

 

[Dutchman]

Good morning everyone. Whether you’re religious or not today seems there’s an atmosphere of hope and renewal in the air. After all we’re all coming out of lockdown apparently. And let’s all meet up and celebrate. But for us who have ambiguous grief day after day at the loss of our love ones to dementia, we know there’s no renewal.

I’m dreading go into the home for the first time since Christmas. Bridget’s home have told me it won’t be long now. But I’ll need to wear a mask and gown and I’ll look like staff. I’ve got used to isolation ( solitary grief) now and don’t really want to mix in the jollity of family gatherings, everyone renewing their old lives.
If I’m a miserable old so and so, well so be it. I wish I wasn’t but my life has changed completely because of Bridget’s dementia.
I suspect many of us, thinking of their love ones, will feel the same.

I send you love and friendship this Easter morning

 

[Old Flopsy]

Hi @Dutchman - yes my thoughts match yours today. I have just rung the home and they say OH has had breakfast and is fine.

I have received the name labels I ordered so now have to sew them on and part with his clothes- that will be hard- it was my job to wash his clothes and keep him clean- now I am redundant. I imagine looking in his wardrobe and most of his clothes will have gone.

I asked if the carer could take a video of OH if I take my ipad when I go to deliver the clothes- she said they will gladly do that. I haven't seen him for two weeks- the longest we have ever been apart.

This is so hard.

Thinking of you Peter.

 

[Dutchman]

Thanks for your reply @Old Flopsy. Wouldn’t it be great if we could all meet up and just sit with each other. Nothing more, just sit and understand

 

[Old Flopsy]

Ah yes @Dutchman - but you might need your long johns on -it's going to snow tomorrow!

 

[kindred]

Good morning everyone. Whether you’re religious or not today seems there’s an atmosphere of hope and renewal in the air. After all we’re all coming out of lockdown apparently. And let’s all meet up and celebrate. But for us who have ambiguous grief day after day at the loss of our love ones to dementia, we know there’s no renewal.

I’m dreading go into the home for the first time since Christmas. Bridget’s home have told me it won’t be long now. But I’ll need to wear a mask and gown and I’ll look like staff. I’ve got used to isolation ( solitary grief) now and don’t really want to mix in the jollity of family gatherings, everyone renewing their old lives.
If I’m a miserable old so and so, well so be it. I wish I wasn’t but my life has changed completely because of Bridget’s dementia.
I suspect many of us, thinking of their love ones, will feel the same.

I send you love and friendship this Easter morning

Thank you and mine to you. Yes, no renewal. I feel I have lost will or energy to go on today. how can I walk through this beautiful spring when beloved Keith can no longer see it. What’s the point.
Warmest, Kindred

 

[Dutchman]

Yes, I know entirely what you mean Kindred. Just come back from the home and even though it’s warm sunshine no one’s outside enjoying it. Bridget’s indoors all the time walking.

I feel it’s mean of me to feel the lovely weather when she can’t. And summer means nothing if we can’t enjoy it together. Everyone making the most of summer just rubs in the loss.

Is this what’ll be like each year when holidays start, laughter from happy people, memories of their holiday high spots, when we are just fixed with our precious memories of what once was.

peterx

 

[kindred]

Yes, I know entirely what you mean Kindred. Just come back from the home and even though it’s warm sunshine no one’s outside enjoying it. Bridget’s indoors all the time walking.

I feel it’s mean of me to feel the lovely weather when she can’t. And summer means nothing if we can’t enjoy it together. Everyone making the most of summer just rubs in the loss.

Is this what’ll be like each year when holidays start, laughter from happy people, memories of their holiday high spots, when we are just fixed with our precious memories of what once was.

peterx

Thank you Peter. I agree. I feel cast out of normal life. I can only pretend to laugh or enjoy myself. It’s a real torment. Thank you. Kindredx

 

[Dutchman]

Just tapped that button on the phone I shouldn’t go near and I’m looking at pictures of Bridget before dementia . It’s so difficult to appreciate that this was once my wife, friend, lover and companion and someone that I should have taken much more care of, told her more often that I loved her , taken her less for granted and appreciated more what I had. Too late now.
It’s so strange looking at these pictures as it’s like looking at someone else, someone I used to know. And that’s so upsetting because I don’t want this to happen but I can’t stop it because of our long separation and curse of dementia.

Just got through another day. That’s something!

Peter