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Dementia’s journey

Dutchman

Registered User
May 26, 2017
864
Devon
Such thoughtful and helpful posts (kindred and jaded and faded). I’ll write more tomorrow as I’m just off to bed to a hopeful dreamless sleep.

Peter
 

Dutchman

Registered User
May 26, 2017
864
Devon
The home phoned this evening telling me Bridget had tripped and fallen in the corridor. She’s okay but it brings home the frailty of the situation and that I’m not able to help at all.

she must have been so shook up. I’m going tomorrow to see her and I know it will be upsetting for me but I’m unable to keep away.
No doubt I’ll be posting again tomorrow
Peter
 

Dutchman

Registered User
May 26, 2017
864
Devon
Hello everyone.. as if we haven’t got enough on our plate we now have the prospect of care struggling and on the point of closing.

what happens then? I know homes have closed before but this time it could be on a much larger scale. Additionally councils are warning that funding will be further restricted with top up money from relatives set to increase.

at this rate it’s going to destroy my mental state and I’ll need caring for as well.

peter
 

kindred

Registered User
Apr 8, 2018
2,526
Hello everyone.. as if we haven’t got enough on our plate we now have the prospect of care struggling and on the point of closing.

what happens then? I know homes have closed before but this time it could be on a much larger scale. Additionally councils are warning that funding will be further restricted with top up money from relatives set to increase.

at this rate it’s going to destroy my mental state and I’ll need caring for as well.

peter
Yes, it gets to feel like a bomb drops every day. This may seem an off the wall suggestion, Peter, but if by any chance there is a closure threatened, consider employing an independent social worker. Not that expensive.
With love, kindred.
 
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Dutchman

Registered User
May 26, 2017
864
Devon
I’m having a really bad day and the only way I can relieve the pressure is to talk about it on here. Ive posted many times and you’d think that after Bridget being in the home for 9 months, I’d be adjusting to it a bit. Not so.

the home tells me today that they sense unhappiness in Bridget when it seemed she was relatively content. I’ve just looked at some recent photos of her in the home and I wonder how much more of this I can take. Is it any wonder when, like so many others on the forum, I’m alone imagining how she is, can’t hold her and the love my life is fading away. And my life is fading away with her.. I wonder if she feels lonely too?

Its a real hard struggle to get through each day and I’m finding that to get rid of the day I stay in bed longer.

there must be some way of making ourselves feel better but I suspect not and I continue to grieve every day.

just had to write this down

peter
 

kindred

Registered User
Apr 8, 2018
2,526
I’m having a really bad day and the only way I can relieve the pressure is to talk about it on here. Ive posted many times and you’d think that after Bridget being in the home for 9 months, I’d be adjusting to it a bit. Not so.

the home tells me today that they sense unhappiness in Bridget when it seemed she was relatively content. I’ve just looked at some recent photos of her in the home and I wonder how much more of this I can take. Is it any wonder when, like so many others on the forum, I’m alone imagining how she is, can’t hold her and the love my life is fading away. And my life is fading away with her.. I wonder if she feels lonely too?

Its a real hard struggle to get through each day and I’m finding that to get rid of the day I stay in bed longer.

there must be some way of making ourselves feel better but I suspect not and I continue to grieve every day.

just had to write this down

peter
Peter, all sympathy and thoughts. I don’t know how we can make ourselves feel better and I know exactly what you mean about getting rid of the day ...This is such a tormenting situation . You know I volunteer in a nursing home. Some of the residents there seem lonely one day and then perfectly happy the next, the emotions don’t seem consistent or lasting. I think you may have to try to assume she is contented overall. Grief is bloody awful and we can only get through it as we can. With love and fellowship, kindred
 

Dutchman

Registered User
May 26, 2017
864
Devon
Thanks kindred. I often feel I’m dumping my concerns at the door of TP so please forgive me. At this rate I’ll be still be as I am now in 3 months time ( when Bridget went in) .

My daughter has asked how am I but it’s difficult to explain and I’m lost for words. You don’t want to burden your children. My daughter is not Bridget’s but from my first marriage.

Anyway, perhaps I’ll be in a better mood tomorrow although I’m going to the home and that always makes me miserable. So why go I’ve been asked? It’s because i love her and miss her so much that I need to see her.

Peter
 

Woo2

Registered User
Apr 30, 2019
2,980
South East
I think that it was maybe a little thoughtless of the Home to tell you that when we are in Lockdown and you can do so little to change it , I would agree with @kindred that i am sure she will perk up again soon . I’m sure she will be pleased to see you tom . Have you seen the suggestion that @Louise7 mentioned to @Palerider about buying a card from Amazon that you can record a message in to ? Wonder if maybe you could get one and send it in ? It’s very hard to be open and honest with family , maybe could you write to your daughter and let her know that way how much you are struggling . Sending you a big hug , you are doing so well, take small steps , one hour at a time 🤗 Be kind and gentle on yourself .
 

Dutchman

Registered User
May 26, 2017
864
Devon
Hi everyone. First let me send you some virtual hugs and support. We’re all going through some form of torment related to dementia and I find it enough just to get through the day..Well done everyone for your courage and for just living as best you can.. I just wish I could see you all and thank you all for your support in person.

I have to admit that I’m finding it extremely difficult to get motivated about anything. I stay in bed most of the morning and when I do eventually get up I want to do nothing.

I had resolved to have a guilty free day today but the guilt monster has had his way. Little conversations come back where Bridget , in the midst of all the dementia upset, had asked me not to do things on my own, but I did. She repeatedly said that “You onlly think of yourself” and she was right In many respects. I bitterly regret now how I treated her and wish I could has been more understanding and kind.

Many on the forum have said that they see me as good person who looked after Bridget as best I could but I think I let her down with my selfishness when she needed me the most. And I can never put that right.

We all know that grief never really goes away and I find myself crying when washing up, doing the garden, driving, just about anything. I thought I’d be some way better by now but it seems I’m back to square one.

please forgive me for unloading all this but I don’t have my counsellor now, she cannot she me because of Covid, and it really helps writing this down.

bless you all

peter
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,116
Kent
Many of us have regrets Peter.

It`s easy with hindsight to realise all the things we might have done better. It`s not quite as easy to be perfect when we are exhausted and isolated as carers.
 

lemonbalm

Registered User
May 21, 2018
870
You mustn't blame yourself for something over which you had no control, Peter. Watching someone we love go through dementia is one of the hardest things any person can face but you have faced it and are facing it still. Your posts really do show you to be a caring man and a brave man. It is obvious that everyone here cares about you and you deserve that! It is easy to flounder in our own dark thoughts, particularly now when there are so few distractions. Try to find some nuggets of gold among your memories, things that made you laugh, things that shine out through the darkness. And keep posting (no apologies needed for those!)
 

Dutchman

Registered User
May 26, 2017
864
Devon
I’m writing this from my nice warm bed. It’s a sort of escape from all the upset that posters like us feel every day.

More and more each day I get the feeling that I’m losing my Bridget. In normal life you see each every day, take for granted the company you have with other, make little plans, have a laugh, and loads of other stuff. Now i see her for 10 mins 3/4 times a week and then she doesn’t really understand what’s going on, and when I say I love you she doesn’t know how to respond.

I get rid of the day as best I can. I get up late, I make a meal and read, but later I curl up on the sofa to sleep again. It’s just that I can’t be bothered to do anything. And when it’s quiet and I get to thinking is when I miss her most and cry. I cry for myself and the loneliness and the way Bridget is now.

It’s crazy isn’t it. You know deep down you could never on your own have coped any more with the dementia, but you still want them back to somehow rescue some of their feelings for you. It’s hopeless I know but I can’t help myself.

bless you all

peter
 

Dutchman

Registered User
May 26, 2017
864
Devon
I’m writing today, to you, because I’ve no one else I can turn to who actually knows and understands. Friends and family try, God bless them, but no matter what they say it’s not enough to shift anything. My counselling sessions have been cancelled due to the virus so I’ve no one apart from TP.

I’d like to know if this is normal behaviour........I’ve only just got up (it’s 12.00 noon) and this happens most days. I see little point in getting up. I find sleep gets rid of the day. I look at escapism films every day. Anything really to take my mind off of my loneliness and a longing for my wife who's leading a different life now.

i look out of the window, at the garden, and I’m completely numb, just empty. I feel unable to make sense of any of it. The doctor prescribed antidepressants ages ago but these aren’t even denting my mood.

Is it fair to say what we feel and going through, my fellow carers, Is a illness without a cure. And if it is an illness then we’re entitled to do anything to ease the pain. I’m stumbling around trying to find anything, anything that would make some of this pain go away.

Please tell me that all of this normal, that it’s what I should expect now.

Peter
 

kindred

Registered User
Apr 8, 2018
2,526
I’m writing today, to you, because I’ve no one else I can turn to who actually knows and understands. Friends and family try, God bless them, but no matter what they say it’s not enough to shift anything. My counselling sessions have been cancelled due to the virus so I’ve no one apart from TP.

I’d like to know if this is normal behaviour........I’ve only just got up (it’s 12.00 noon) and this happens most days. I see little point in getting up. I find sleep gets rid of the day. I look at escapism films every day. Anything really to take my mind off of my loneliness and a longing for my wife who's leading a different life now.

i look out of the window, at the garden, and I’m completely numb, just empty. I feel unable to make sense of any of it. The doctor prescribed antidepressants ages ago but these aren’t even denting my mood.

Is it fair to say what we feel and going through, my fellow carers, Is a illness without a cure. And if it is an illness then we’re entitled to do anything to ease the pain. I’m stumbling around trying to find anything, anything that would make some of this pain go away.

Please tell me that all of this normal, that it’s what I should expect now.

Peter
All of this is absolutely normal Peter, it is a terrible limbo and you are getting through it although it is causing you terrible pain. This is a situation beyond imagining, I know. It doesn’t matter how long you stay in the warm bed, that is looking after yourself.
Yours is a normal response to an inhuman situation.
I’m sure one of the reasons I volunteer at the nursing home where Keith died is because in my heart I believe they will open the door and wheel him in again to me one day.
With love and fellow feeling Geraldinex
 

Dutchman

Registered User
May 26, 2017
864
Devon
Oh Kindred, such a considerate reply. It’s obvious that you miss Keith a whole load and why wouldn’t you expect to see the one you loved appear again. I often glance up, look out the widow and think I’ll see Bridget walking up the garden path. When we love somebody so much our memories are firm and set. We long for things to be different.

im sure I’ve said this before but I do ask myself “why do I visit Bridget” . I often feel upset when I’m there and wretched when I leave, so why bother? I’m going this afternoon and can only speak to her through the window.

I suppose it’s me wanting to hold on to any remnants of our relationship and I do know it’s difficult and making me really upset. But the need to see Bridget is very strong, so I’m caught.

I’ve never known such heartbreak and can see no way out of it. I spoke to a friend yesterday and I could tell he expects me to be over most of this by now. Living like this every day with Bridget deteriorating with vascular dementia is very cruel and I don’t wish this situation on anyone.

As you say it’s an inhuman situation which is torture every day. So why wouldn’t I be upset. But I want some relief from it all and I can think of nothing that can be done. II’m now on my own after 30 years and it sucks.

I do think sometimes that I’m not making enough effort to move forward but I’ve no motivation and I’m frightened that will always be the same .

Bless you

peter
 

Stacey sue

Registered User
Jan 24, 2020
77
Feeling sad today, I find it so hard to except what he is to what he was. Not being able to visit the CH does not help. I can not see it for myself. There seems to be no end to this Covid nightmare. No motivation, At last Dave has no thoughts on the virus, I wonder if he notices there are no visitors?? I know that is not possible but these thoughts still pop into your head . How I want just a hug sometimes,from him would be the best? There is comfort to know your not alone in these awful times.
kind thoughts Sue.
 

kindred

Registered User
Apr 8, 2018
2,526
Feeling sad today, I find it so hard to except what he is to what he was. Not being able to visit the CH does not help. I can not see it for myself. There seems to be no end to this Covid nightmare. No motivation, At last Dave has no thoughts on the virus, I wonder if he notices there are no visitors?? I know that is not possible but these thoughts still pop into your head . How I want just a hug sometimes,from him would be the best? There is comfort to know your not alone in these awful times.
kind thoughts Sue.
Dear Sue, I’ve just returned from my shift as a volunteer at the nursing home where my husband died. We are in lockdown lIke everywhere else. All the residents have advanced dementia. Of course some notice there are no visitors but I would say most of our beloved residents notice that there are fewer people about on the staff side. This does not seem to make them sad and we use soft animal toys, lots of hugs from us etc to try to compensate and Give them the affection they crave as we all do. I have noticed that when residents are sent a soft toy like a puppy or puss, with something like please look after me written around the collar, they are so pleased.
Warmest, I do so understand Kindred,x
 

Stacey sue

Registered User
Jan 24, 2020
77
Thankyou for your insight, I hope it won’t be too much longer until I can visit. Dave has been in the home since the beginning of March, he has improved a little since his stay in hospital which was the worse experience for him and us as a family,just one incident after another. Have got nothing good to say about that at all. When and if possible I would like to move him nearer to where I live. I have been told that he could deteriorate and would not be good to move him,The CH where he is I have no problem with at all, other than the distance from his family. Would I be wrong to move him? We could all see him after Covid much easier!?. Thanks again Kindred.
 

kindred

Registered User
Apr 8, 2018
2,526
Thankyou for your insight, I hope it won’t be too much longer until I can visit. Dave has been in the home since the beginning of March, he has improved a little since his stay in hospital which was the worse experience for him and us as a family,just one incident after another. Have got nothing good to say about that at all. When and if possible I would like to move him nearer to where I live. I have been told that he could deteriorate and would not be good to move him,The CH where he is I have no problem with at all, other than the distance from his family. Would I be wrong to move him? We could all see him after Covid much easier!?. Thanks again Kindred.
So lovely to hear from you, thank you. Yes, I observe that sometimes moved residents do take a while to settle in with us, and it seems to be a shock to their system. They need a framework they can feel familiar with. Having said that, most do settle in to a new home. I think it could be a case of seeing if he has formed any strong relationships at his present home and weighing this up against the undoubted value of family visits.
Warmest, Kindredx
 

Stacey sue

Registered User
Jan 24, 2020
77
Thankyou, I did not think of him forming relation ships with others?? It has only been a few weeks, Best Sue.