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Dementia’s journey

jennifer1967

Registered User
Mar 15, 2020
5,952
0
Southampton
thats good to hear that Bridget is eating again with such gusto. it might have just been that she wasnt feeling good and went off her food like we do. good they are checking her
 

Dutchman

Registered User
May 26, 2017
1,417
0
73
Devon, Totnes
I’m waiting for a call back from a counselling service local to me. They’re busy of course, which just goes to show how much it’s needed.

I feel so uncomfortable with the business of going and or not going to the home. I haven’t visited today and I feel I’ve abandoned her. And I know that she won’t know that I haven’t been and I know she’s now in the care of others who are professional, but the feeling of guilt remains because I consider I’m not doing enough.

I imagine her sitting there on her own, in her room. I desperately hope that she doesn’t feel lonely in her dementia world.

It’s 21.43 now and she’s probably off to bed and it’s the one time I’m fairly calm because she’s asleep and I so will I be soon. So in a weird way we are sharing the same thing.

I look back on my earliest posts in 2017/18 and cringe with sadness at what I wanted then. I wanted it all to stop and for some freedom. I’ll admit that I used to plan for a life on my own, to be free to do stuff on my own. Bridget would say “why do you look at your iPad so much?”

I was fantasying about what life would be without the stress of her dementia. Now I think what a selfish so and so I was then. But when you’re in the thick of it with no escape all I could do was fantasise. Please forgive me my darling.

peter
 

Andy54

Registered User
Sep 24, 2020
59
0
@Dutchman , During the last year that Deb was at home with me and things were getting increasingly desperate and difficult I used to think of all the things that I could do when I was "free", I don't think that they were selfish thoughts - maybe just survival thoughts. Now that Deb is in care have I done any of those things? no of course not, now I have the opportunity I find that the idea of doing things on my own without her rather pointless. We can't win can we, whatever we do feels wrong to us. I'm (almost) starting to feel the sense of abandoning Deb a little less though and am coming to realise that that would only really be true if I never visited her. Maybe my real problem is that I overthink things - a habit it is very hard to break.
Andy.
 

Dutchman

Registered User
May 26, 2017
1,417
0
73
Devon, Totnes
I went to the home today and for the first time her fall ( 3 weeks ago) she was brought downstairs and had a shower and hair wash and is now sitting in the lounge, not isolated in her room. My darling Bridget seems better but it’s still early days in her recovery. My feeling is that she will be chair bound now as she seems to have lost the confidence of natural walking ( could be wrong).

How strange that my Bridget’s body was once intimately mine and now she was washed and cared for by two male carers. I know it’s their job and they’re professional doing it for all the residents but it still kind of bothers me- shouldn’t but it does!
Peter
 

Dutchman

Registered User
May 26, 2017
1,417
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73
Devon, Totnes
Does anyone know why my wife with vascular dementia should want to clap repeatedly. It’s almost like saying something, like a communication of sorts. I had to hold her hand and then she clapped against mine so hard I thought she might hurt herself.

Is it frustration, a repeated action for comfort, I just don’t know?
 

Dutchman

Registered User
May 26, 2017
1,417
0
73
Devon, Totnes
I agree @Grannie G. I just find it upsetting that she has this need to do this. The decline from normality to how dementia has affected her is alarming and it breaks my heart that a once highly intelligent woman is brought down to this.

I want her calm and stress free, with no anxiety and as content as she could be within her dementia world. To think that she suffers is too much to bear sometimes.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
74,138
0
Kent
My first experience when visiting a care home was an absolute shock.

All these people, once pillars of the community, husbands, wives, partners, parents and respected work colleagues, most in their own little worlds.

I don`t think I`ll ever get used to it, nor would I want to and am mindful of the fact it could be me one day or any of us.

I`m at the age now where many, younger than I am, are struggling with different degrees of incapacity. I can only identify and count my blessings.
 

Dutchman

Registered User
May 26, 2017
1,417
0
73
Devon, Totnes
Am i feeling uneasy over nothing? I mentioned earlier that i felt uncomfortable that two male carers were given the job of giving my wife a shower. I think its only natural that i find this upsetting as Bridget is, after all, still my wife and I'm used to our bodies being just mine and hers. What i should have done i suppose is offer to help so i could have been in the shower room with her. But circumstances sort of took over and i felt redundant.

Are these the things that i'm expected to accept now Bridget's in care? . Is all natural dignity gone? It such a difficult and awkward situation and how do I mention it to the home without them feeling that I’m suspicious of something?

I would prefer female carers but I know staffing levels don’t allow for this flexibility.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
10,665
0
Yorkshire
the male carers I came across were professional, thoughtful and efficient and kind ... they maintained the dignity by being that way so 'personal'care was in many ways 'impersonal' and no source of embarrassment or awkwardness

I think you were right to enable them to provide the care without you as then it can feel acceptable and accepted, so nothing for your wife to be concerned about ... having her as calm and content as possible is, after all, what is most important

of course you can discuss your reactions with the manager, they will have heard such qualms before and listen ... they may well be able to reassure you
 

nellbelles

Volunteer Host
Nov 6, 2008
9,317
0
leicester
I once had a male nurse while I was in ICU, I didn’t have an issue with it he was considerate and professional.
It’s not really any different to female carers dealing with a male patient please try not to dwell on it.
 

notsogooddtr

Registered User
Jul 2, 2011
1,022
0
I had a male student midwife in attendance when I had my fourth baby. Quite a new thing in those days! Men have had to accept care from females for ever, I think some people still struggle with the concept of men in a caring role.
 

Dutchman

Registered User
May 26, 2017
1,417
0
73
Devon, Totnes
Hi everyone.
I’ve moved from in bed, to making myself a cup of tea, to back in bed. I’ll get up and have some breakfast soon. Believe me even all that is a struggle sometimes.

I know that when I post on here others often never really know what to say. Sometimes there are no words of comfort to be said. I’m the same.

My greatest fear at the moment, and what churns my stomach over and over, is the knowledge that Bridget is deteriorating more so than before. I’ve pretended to myself that she’d just go on and we’ve got time together into the future. It’s one way I cope with the situation. Her deterioration after her fall has shocked me into having to face her decline.

And, of course, everyone is kind and never talks about the obvious, the thing that’s staring me in the face, because why would they? No one wants to upset me and no one wants to be upset.

I just don’t know how I’m supposed to journey through all these emotions. In many respects once Bridget dies ( did I actually face that in words?) things might be easier - no more worries and scary anticipation. But then I would have a whole new load of grief to handle. Does it never end? It surprises me that we don’t explode with the torment of it all!
Peterx
 
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kindred

Registered User
Apr 8, 2018
2,739
0
Hi everyone.
I’ve moved from in bed, to making myself a cup of tea, to back in bed. I’ll get up and have some breakfast soon. Believe me even all that is a struggle sometimes.

I know that when I post on here others often never really know what to say. Sometimes there are no words of comfort to be said. I’m the same.

My greatest fear at the moment, and what churns my stomach over and over, is the knowledge that Bridget is deteriorating more so than before. I’ve pretended to myself that she’d just go on and we’ve got time together into the future. It’s one way I cope with the situation. Her deterioration after her fall has shocked me into having to face her decline.

And, of course, everyone is kind and never talks about the obvious, the thing that’s staring me in the face, because why would they? No one wants to upset me and no one wants to be upset.

I just don’t know how I’m supposed to journey through all these emotions. In many respects once Bridget dies ( did I actually face that in words?) things might be easier - no more worries and scary anticipation. But then I would have a whole new load of grief to handle. Does it never end? It surprises me that we don’t explode with the torment of it all!
Peterx
Peter, I know. It is a wonder we don’t explode. We kind of plod on in the hope something good or even a quantum of good might happen …with you all the way. Kindredx
 

lollyc

Registered User
Sep 9, 2020
384
0
Am i feeling uneasy over nothing? I mentioned earlier that i felt uncomfortable that two male carers were given the job of giving my wife a shower. I think its only natural that i find this upsetting as Bridget is, after all, still my wife and I'm used to our bodies being just mine and hers. What i should have done i suppose is offer to help so i could have been in the shower room with her. But circumstances sort of took over and i felt redundant.

Are these the things that i'm expected to accept now Bridget's in care? . Is all natural dignity gone? It such a difficult and awkward situation and how do I mention it to the home without them feeling that I’m suspicious of something?

I would prefer female carers but I know staffing levels don’t allow for this flexibility.
Would you worry if it was male doctors, or males nurses? Perhaps more importantly, would Bridget worry about it? My Mum never has had a problem with being examined by males ( that doesn't really sound right, but you know what I mean) and has no issues with male carers when we've had them.
Looking at it another way - would you want only male carers if the positions were reversed? I suspect you wouldn't have an issue with female carers.
 

jennifer1967

Registered User
Mar 15, 2020
5,952
0
Southampton
a male midwife delivered my third child with my husband in the room. he was the best midwife i had and im funny about men. much more intimate than a shower. i think that men dont mind women carers for themselves because their mums looked after and nurtured them. you might just have to look away if its difficult to watch.
 

Dutchman

Registered User
May 26, 2017
1,417
0
73
Devon, Totnes
I’m crying but who and what do I cry for now?

I’m crying for me because I feel sorry for myself because the grief hurts and hurts and twists my guts all the time. I cry because I miss her so much and because I’m lonely for her.
I cry for Bridget because she has dementia and how dementia has reduced her and attacked her life and personality. And how she has to suffer and she can’t understand how dementia is using her up. Perhaps she doesn’t know, is oblivious to her dementia world, who knows? Not even the doctor can tell me.

So I cry at the unfairness of it, that all our hopes of just getting old together, just doing mundane things together are gone. Perhaps dying together in a car crash isn’t so bad after all. I can fully understand why lovers feel they will take their lives together rather than being left alone.
Peterx
 

kindred

Registered User
Apr 8, 2018
2,739
0
I’m crying but who and what do I cry for now?

I’m crying for me because I feel sorry for myself because the grief hurts and hurts and twists my guts all the time. I cry because I miss her so much and because I’m lonely for her.
I cry for Bridget because she has dementia and how dementia has reduced her and attacked her life and personality. And how she has to suffer and she can’t understand how dementia is using her up. Perhaps she doesn’t know, is oblivious to her dementia world, who knows? Not even the doctor can tell me.

So I cry at the unfairness of it, that all our hopes of just getting old together, just doing mundane things together are gone. Perhaps dying together in a car crash isn’t so bad after all. I can fully understand why lovers feel they will take their lives together rather than being left alone.
Peterx
I so understand. Keith and I made a suicide pact but it very quickly became evident that he would not have the capacity. I find some comfort in that I was able to take care of him with love right up to his death. Kx
 

blackmortimer

Registered User
Jan 2, 2021
259
0
I’m crying but who and what do I cry for now?

I’m crying for me because I feel sorry for myself because the grief hurts and hurts and twists my guts all the time. I cry because I miss her so much and because I’m lonely for her.
I cry for Bridget because she has dementia and how dementia has reduced her and attacked her life and personality. And how she has to suffer and she can’t understand how dementia is using her up. Perhaps she doesn’t know, is oblivious to her dementia world, who knows? Not even the doctor can tell me.

So I cry at the unfairness of it, that all our hopes of just getting old together, just doing mundane things together are gone. Perhaps dying together in a car crash isn’t so bad after all. I can fully understand why lovers feel they will take their lives together rather than being left alone.
Peterx
What you're feeling is what we all feel, @Dutchman. Everything that you have said rings true with me and, obviously, with others here because we're all been on the same journey. What differs, I suppose, is how we cope and in that I suspect we're all different. I've taken the view that Margaret has gone - gone into "that silent land" that Christina Rossetti speaks of so eloquently and I cannot follow her but I can remember. So I have taken a deliberate decision to detach myself as far as I can from Margaret's present physical state and do all I can to keep the memory of the"real" Margaret alive. My children are both understanding and they are happy to keep the torch of visiting and dealing with the nursing home alight so that I don't feel I have to be on hand day and night as I was when Margaret was at home.

I don't dwell on the prospect of Margaret's death because I have no way of knowing how far off it might be nor indeed whether she or I will go first and also because if I centre on the memories of Margaret in her glorious prime I really believe she will always be with me. And that's enough. I find it more and more difficult to think of her as she is now, although I count my lucky stars regularly that she is in a place where she is well looked after and seems to be happy in her little bubble. But my concern is to keep the flame of Margaret's personality alive as long as I am alive and little by little I find the grief easing.

I accept that my way of dealing with my grief is mine and mine alone. Perhaps I'm too influenced by long gone romantic poets but one line, again from Christina Rossetti, keeps recurring :-

"...if the darkness and corruption leave/a vestige of the thoughts that once I had/Better by far you should forget and smile/than that you should remember and be sad"