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Dementia’s journey

Stacey sue

Registered User
Jan 24, 2020
70
Hi, I feel like this, remembering the whole person rather than this shell of a man. I just cannot move on,I think this is due to Covid because visits are short and distant.
I so miss and just want him home. Our family are supportive but not here , I don’t want to put upon them,they have there own lives to lead. When we were told that Dave had dementia, I really didn’t know he would deteriorat so quickly. I have to go and see him through the window because if I don’t he will not know me, and I can not cope with that at the moment. ssue.
 

Dutchman

Registered User
May 26, 2017
813
Devon
Hi Sue

You know that Roy Orbison song “In dreams” , well last night i dreamt she was fully recovered somehow and at home, we talked about not going back to the care home, she looked lovely and even wanted to go back to work as a teacher. I asked the doctor how this has been possible and she said other parts of her brain has got better..All so vivid and so real.

Of course i woke up confused and sad.

It’s what all of us really want isn’t it and even in our dreams we’re fooled. Day and night cruelty

Peter
 

Stacey sue

Registered User
Jan 24, 2020
70
Don’t know if that’s good or sad? No nice to wake up to reality?? Good while it lasts. I think there is a deterioration during lock down? Glad to see they are letting one visitor in some care homes to visit!! God I so hope it is the case in our care home, desperately just want to hold him.🙏🏻🙏🏻🙏🏻 Sweet dreams Peter.xx
 

Dutchman

Registered User
May 26, 2017
813
Devon
I find it upsetting as it’s seems so real and what i dearly want, that to wake up to reality is not nice.

I suppose it’s inevitable that these dreams happen

Peter
 

Stacey sue

Registered User
Jan 24, 2020
70
It is comforting to know you feel the same , I like you find it hard to move on!! Maybe with more contact with loved ones reality will be more evident?? SSue.xx
 

Dutchman

Registered User
May 26, 2017
813
Devon
It is comforting to know you feel the same , I like you find it hard to move on!! Maybe with more contact with loved ones reality will be more evident?? SSue.xx
I’m comforted in a small way to know that Bridget is safe and well cared for and is oblivious to our scary world at the moment. Everyone asks me if I can go in now to see her but i want to hold her tight and i’m not sure when that can happen.

I want Bridget back here at home every day like you. That’s my 💖 talking. The problem is, of course, in reality she doesn’t know me as her husband, couldn’t wait to escape our lovely home, and now knows the care home as her home.

One of the biggest things that upsets me and gets me crying is when i know i can’t remember our last meaningful conversation together. Bridget never stopped talking about all sorts of stuff and i sometimes couldn’t get a word in edgewise ( in a nice way) . Now she struggles with a four word sentence.

I do wish I could ease your pain in some way but i’ve never found is easy to lessen mine. Every day throws up new or repeating things that cause pain and heartbreak. Perhaps, in the end, we just have each other.

God bless

Peter
 

Stacey sue

Registered User
Jan 24, 2020
70
I think no matter what we can always look back and think we could have been kinder or done things differently, I think I PUT Dave in the ch , maybe too soon didn’t try him for long enough at home?? This is such a cruel disease,and nobody truly understands until you have lived with it!! The guilt stays with you.!! Yes your right Peter we feel very similar , and have each other . SSuex
 

Dutchman

Registered User
May 26, 2017
813
Devon
Hi Sue

Good to read your reply. I’ve written somewhere else on the forum but it relevant to us both perhaps.

Im constantly told my friends and professionals that no matter how i was with Bridget, how much i did or didn’t do, kind or not, selfish or not, in the end it wouldn’t have made any difference to the outcome. Does that make a difference to the way i feel? Only sometimes.

I also sense a feeling from family that now a year has past i shouldn’t be getting into a state over things. But as you so rightly point out until you go through this ( and i don’t wish this on anyone!) you will never fully understand. They have their busy family lives and i have my life to get on with.

Im here

Bless you . Peter
 

Stacey sue

Registered User
Jan 24, 2020
70
Thankyou for your reply, yes life has to go on,although so much different then we could have imagined . Yes the outcome would have been the same,that’s what I have to keep in mind,he is not going to stay as he is now,just a slow deterioration.
Thanks again Peter, your posts keep me going. SSue x
 

Dutchman

Registered User
May 26, 2017
813
Devon
Hi everyone.

Im off to see Bridget this morning. Usual routine, looking through the window, giving flowers, saying i love you and hoping for some similar reply, although i suspect she no longer understands the deep feelings and , in many ways i’m glad she doesn’t as it would mean she might get upset.

Now theres a move by the government to relax the visiting in some way but i’m unclear of the details. I’ll be guided by the care home. I’m anxious now that after so long i’ll not be able to adjust to going in and actually touching. To be brutally honest i’ve found it easy to just see her through the window and now to extend visits to what it was like before lockdown is going to get some getting used to.

Im reassured by knowing that she isn’t going to miss me as her loved one, that she probably wouldn’t miss me when l leave and she’s very well looked after.

Peter
 

Wifenotcarer

Registered User
Mar 11, 2018
318
Central Scotland
Hi everyone.

Im off to see Bridget this morning. Usual routine, looking through the window, giving flowers, saying i love you and hoping for some similar reply, although i suspect she no longer understands the deep feelings and , in many ways i’m glad she doesn’t as it would mean she might get upset.

Now theres a move by the government to relax the visiting in some way but i’m unclear of the details. I’ll be guided by the care home. I’m anxious now that after so long i’ll not be able to adjust to going in and actually touching. To be brutally honest i’ve found it easy to just see her through the window and now to extend visits to what it was like before lockdown is going to get some getting used to.

Im reassured by knowing that she isn’t going to miss me as her loved one, that she probably wouldn’t miss me when l leave and she’s very well looked after.

Peter
OH's Care Home have been in touch to say they will be starting garden visits in a week or so. Only 1 person can sign up to be the visitor (That will be me of course) A member of staff will be present at all times. Social distancing and no touching will be enforced. They will only be able to arrange 2 of these visits per day and they will only take place if the weather is kind. So, with 40 residents in the home I will be lucky to get 1 visit per month
 

Old Flopsy

Registered User
Sep 12, 2019
11
Hi everyone.

Im off to see Bridget this morning. Usual routine, looking through the window, giving flowers, saying i love you and hoping for some similar reply, although i suspect she no longer understands the deep feelings and , in many ways i’m glad she doesn’t as it would mean she might get upset.

Hi Dutchman I must tell you it is such a comfort to me to read through your many posts.I am at the start of the dementia journey with my husband recently diagnosed, and I admit I am scared at the prospect of how things will get worse. Today I managed to persuade him to allow me to cut his hair on the patio- the clumps of grey hair blew round in the wind- hair that was once jet black and even longer in the sixties! Then he agreed to shower, at last! So we soldier on and pray for strength.
 

Dutchman

Registered User
May 26, 2017
813
Devon
Hi all. Judging by what i’ve heard, the combination of visits only out in the garden, no touching, being chaperoned by staff and having to make an appointment, well, i dont think i’ll bother. I’ll just keep doing what i’m doing till the lockdown really eases off.....if at all!

Staff took the trouble to come out and tell me this morning that they leave her to do what she wants (apart from meal times and tea time) as Bridge is able to wander safely and handle the stairs. Apparently she’s quite happy to be left and is always on the look out for food. More than she was here last year as she never wanted food at the end.

God bless and thanks for your comments. Peter
 

Dutchman

Registered User
May 26, 2017
813
Devon
Hello everyone.

The very thing i didn’t want to do i’m doing. i’m becoming increasingly numb to the extreme feelings of loss and heartbreak. It’s not that i’m actively wanting to be like this , it just creeping up on me on a daily basis in the form of self protection and a coping strategy.

I suppose it’s a good thing that i’m not experiencing rawness of feeling quite so much but that brings with it a feeling of guilt again because i believe i shouldn’t be this way. But i just can’t keep up the daily upsets and agony of missing Bridget because otherwise I can’t function just doing the ordinary things i got to do.

The other alternative is to become reclusive, stay in bed and other unhealthy stuff. And that’s not helping Bridget at all and i’ve really got to stay on top of things for her sake. Hard to do but i’ve really no choice

Stay as strong as you can. Be as kind to yourselves as you can

Peter
 

Dutchman

Registered User
May 26, 2017
813
Devon
Been busy in my garden today. in fact done too much. It’s one way of diverting my attention from just being on my own.. At least there’s something to show for it.

Daily routine is... get up around 9 , breakfast and ifs there is nothing planned i just really do very little. Visit Bridget 3 times a week but only for about 15 mins . Our daughter lives 30 mins away and that’s been a life saver although i’m left to myself as they are working on line for most of the day. I enjoy making a meal now i’ve gone vegetarian and i’m quite organised for a bloke!!

It’s in the quiet of the day that memories flood back and you can’t always keep yourself busy.
I could sort more stuff out but i can’t face seeing and touching Bridget’s personal stuff, you know like ....jewellery, shoes, clothes, makeup, etc. One day maybe with the help of our daughter. Its almost like sneaking behind her back to start sorting stuff out but i do know that she has no recollection of any of it now. Anyway, it’s not in my way so one day i’ll try.

God bless

Peter
 

Jaded'n'faded

Registered User
Jan 23, 2019
938
High Peak
Hello everyone.

The very thing i didn’t want to do i’m doing. i’m becoming increasingly numb to the extreme feelings of loss and heartbreak. It’s not that i’m actively wanting to be like this , it just creeping up on me on a daily basis in the form of self protection and a coping strategy.

I suppose it’s a good thing that i’m not experiencing rawness of feeling quite so much but that brings with it a feeling of guilt again because i believe i shouldn’t be this way. But i just can’t keep up the daily upsets and agony of missing Bridget because otherwise I can’t function just doing the ordinary things i got to do.

The other alternative is to become reclusive, stay in bed and other unhealthy stuff. And that’s not helping Bridget at all and i’ve really got to stay on top of things for her sake. Hard to do but i’ve really no choice

Stay as strong as you can. Be as kind to yourselves as you can

Peter
Hello Peter. I think what you are actually experiencing is simply time. People say 'time is a great healer'. An annoying cliché and I don't know it does that exactly but it does change things very gradually. Part of it is you simply getting used to how things are now - you hate it just as much as you did the first day, but you are more used to it now, used to the feelings it brings. It isn't new anymore so it doesn't shock and dismay you quite as much when you wake up each morning.

To me you sound stronger, more positive, more sure of the things you do and don't want to do. You may still feel in the depths of despair at times, but not all the time. Please don't feel guilty about that! You are stronger for visiting and supporting Bridget.
 

Dutchman

Registered User
May 26, 2017
813
Devon
Hello Peter. I think what you are actually experiencing is simply time. People say 'time is a great healer'. An annoying cliché and I don't know it does that exactly but it does change things very gradually. Part of it is you simply getting used to how things are now - you hate it just as much as you did the first day, but you are more used to it now, used to the feelings it brings. It isn't new anymore so it doesn't shock and dismay you quite as much when you wake up each morning.

To me you sound stronger, more positive, more sure of the things you do and don't want to do. You may still feel in the depths of despair at times, but not all the time. Please don't feel guilty about that! You are stronger for visiting and supporting Bridget.
Thanks for that. It’s been one hell of a year, what with the initial parting on 23 August 2019 in the morning, the extreme feelings that we all go through of abandonment, guilt and misery.

I’m seriously considering a dog as company and although i’m told it’s a big responsibility i think the benefits will outweigh any doubts. I need something to love and care for. This is very limited for me and Bridge in the same way even though i’ve loved her and continue to love as my only love i’ve had. I suppose that’s one of the biggest upsets

Thanks for your thoughtful reply and for taking the time to give me comfort.

Peter
 

Dutchman

Registered User
May 26, 2017
813
Devon
I have to say that all I experience is kindness from all those i’ve come into contact with when on this dementia journey. Even the women at the council when needing to discuss funding around November is sympathetic and wants to help.

I suppose when you are exposed to the anxiety and complexities of dementia daily then you really understand what we are going through.

Peter
 

Dutchman

Registered User
May 26, 2017
813
Devon
Why do i do this ? I was all set to have a calm day, just taking it easy and i went into Facebook and found a recent picture of Bridget taken at the care home. She looks so neat and tidy, a little underweight, her hair looks good , but in her face she looks lost and fragile. I wish i could just comfort her somehow.

Well it’s got me crying again. Just when i think i’ve got it nailed down it’s upset me badly. I now wonder when i’ll ever be able to look at photos and not crack up.

Peter
 

kindred

Registered User
Apr 8, 2018
2,508
Why do i do this ? I was all set to have a calm day, just taking it easy and i went into Facebook and found a recent picture of Bridget taken at the care home. She looks so neat and tidy, a little underweight, her hair looks good , but in her face she looks lost and fragile. I wish i could just comfort her somehow.

Well it’s got me crying again. Just when i think i’ve got it nailed down it’s upset me badly. I now wonder when i’ll ever be able to look at photos and not crack up.

Peter
Peter, I’m not sure it’s even possible to get this nailed down and I so wish I could help. Just to say that and with you in spirit. I got and get by through constantly saying to myself, grief is normal, grief is normal. I live every day with a smile as my mission is to cheer others, but my heart is broken. Only my friends on this forum know that. With you and grateful for your posts. With love Geraldinexxxxx