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Dementia’s journey

Dutchman

Registered User
May 26, 2017
1,777
0
74
Devon, Totnes
I’ve come to realise throughout this long dementia journey that we’ve all had to face such complex emotions and it’s caused me to doubt myself and question my ability to live normally

Dementia is such a nasty, cruel, unrelenting and bizarre illness. It causes me to think I’ve got it pinned down one moment and I’m just about coping and the next it breaks my heart and I’m all at sea.

There’s no resolution to it. We can’t mourn properly because they’re still here and no communication so there’s no relationship. Would it be better if Bridget just passed away soon? But probably she’ll linger on and drift away. I never thought I would have to face this, as if I’d be immune from the grief others were experiencing. How stupid to think that way.
 

Dutchman

Registered User
May 26, 2017
1,777
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74
Devon, Totnes
Am I alone with this? Am I so different that I feel such a lack of motivation and sorry for myself? I’ve said before that we did little before Bridget went into the home and now I do little on my own. I often feel that visiting the home is my main form of activity.

I’m concerned about the direction my life is taking. I’ve been forced to live alone and I hate it. I hate never having another around doing things. It’s so easy just to lie in bed not face the day. I could visit Bridget today ( don’t have to) but I don’t want to slip into someone who more or less visits because of something to do.
It would be a bit of a comfort to know that others find this type of life equally difficult, lonely and share similar feelings as me.
Sorry, I do unload a lot I know but it’s a form of release
Peter
 

Picture

Registered User
Nov 14, 2021
24
0
I think it’s very hard. Every one is different.
After my husband died I could definitely have just stayed in bed, but I had young children so they were a reason to keep going and made me get up every day.
One thing that always made me feel better was getting outside. I walked a lot, the fresh air made me feel more alive.
And even though it’s the last thing you might feel like, it is beneficial to see other people. Too much time with your own thoughts you can vanish down a hole of self destructive thinking. I tried to reach out to people and arrange things to do, even if it was just a walk or a coffee.

I’m very sorry for the situation you’re in. It is like a limbo between lives.
 

silkiest

Registered User
Feb 9, 2017
636
0
Hi @Dutchman, I think you have had a very difficult time and it is understandable that you feel down at times. Have you seen your GP to make sure that you aren't suffering with depression?
It must be very hard adjusting to living alone, I'm sure that I would find it difficult.
Have you thought about volunteering? You have a wealth of experience that others could benefit from and maybe you could make some friends with similar interests or concerns.
 

Stacey sue

Registered User
Jan 24, 2020
117
0
Hi ,your not alone,you explain it exactly how I feel, there is no end to this rollercoaster,no two days the same. I think it’s easier for the dementia sufferers ,then us left yearning for what we once had. I try to be positive in front of friends and family ,home alone is a sad place.
 

Dutchman

Registered User
May 26, 2017
1,777
0
74
Devon, Totnes
Hi @Stacey sue. Good to hear from you.

I suppose in the end we have to just “get on with it”. I’ve a feeling that now Bridget has been in the home for over 2 years people I meet become tired listening to my outpourings. I think it’s understandable. I’d probably be the same if I hadn’t experienced this terrible dementia journey. Basically people are kind but unable to “be in my
shoes “.

That’s why this Forum is so valuable. Here we can be understood and our emotions fully appreciated.
Thanks for being there for me
Peterx
 

Dutchman

Registered User
May 26, 2017
1,777
0
74
Devon, Totnes
I’ve just made a trip to Homebase and to get there I go right the road that leads to Bridget’s home. It’s my “day off” but I was so tempted to visit and felt so guilty and mean that I didn’t drop by. I visited yesterday and I need the break of a day but why is it that if I don’t go I feel I’m letting her down? I imagine her there, without me and we should be together.

I miss my Bridget so much that now I’m home sitting in the car writing this I feel awful and tearful. This damn dementia never lets you alone.

It’s strange but I crave for what it was in the good times, before dementia and when I’m with her I try to look for any possibility of a connection. And that impossibility upsets me so.
I look forward to bed time so at least there’s the possibility of 8 hours of freedom from all this.
Sorry, I’m rambling and you’re probably a bit tired of these outpourings. It’s just that I’ve nowhere else to go.
 

kindred

Registered User
Apr 8, 2018
2,837
0
I’ve just made a trip to Homebase and to get there I go right the road that leads to Bridget’s home. It’s my “day off” but I was so tempted to visit and felt so guilty and mean that I didn’t drop by. I visited yesterday and I need the break of a day but why is it that if I don’t go I feel I’m letting her down? I imagine her there, without me and we should be together.

I miss my Bridget so much that now I’m home sitting in the car writing this I feel awful and tearful. This damn dementia never lets you alone.

It’s strange but I crave for what it was in the good times, before dementia and when I’m with her I try to look for any possibility of a connection. And that impossibility upsets me so.
I look forward to bed time so at least there’s the possibility of 8 hours of freedom from all this.
Sorry, I’m rambling and you’re probably a bit tired of these outpourings. It’s just that I’ve nowhere else to go.
Peter, while Keith still drew breath I longed for the possibility of connection. Because you tell us how things are, it gives us courage to do the same and I am profoundly grateful.
 

Picture

Registered User
Nov 14, 2021
24
0
It’s hope isn’t it, that keeps you going. That things might be different this time. It’s so hard.
I do also think that there is a relief in visiting because at least you can see what’s going on and you’re not on edge waiting for news from the care home. When I visit my mum I feel I can relax as I won’t get a phone call out of the blue whilst I’m there (I have a real thing about the phone ringing now due to too many bad news panic moments)
 

Dutchman

Registered User
May 26, 2017
1,777
0
74
Devon, Totnes
Can anyone sort this out.

I enter the site and see the little red square with a number and know there’s new messages.
Click on the square and it takes me to the messages. Usually after that the box disappears
But there is still the little red box ( top left corner) with a number one in it and I’ve clicked everything and still the red box remains??? What am I missing?
 

Izzy

Volunteer Moderator
Aug 31, 2003
66,674
0
71
Dundee
I sometimes have that problem - I’ve found that if I keep scrolling down through old messages I find one that I haven’t looked at. To do this I have to open ‘show all’ messages instead of just scrolling those which opens when I click on the red box.
 

Dutchman

Registered User
May 26, 2017
1,777
0
74
Devon, Totnes
I’ve decided to be brave and post my latest picture of Bridget as she looks up at me. I’m visiting today and always always I feel anxious about going although it’s ok when I get there and settle down.

I sometimes get the feeling that she’s very matter of fact about it all. She always was a very pragmatic type of person, much less prone to emotional outbursts like me. I could be wrong ( I’m wrong about a lot of things!). Whenever I ask her “are you happy” she looks at me and “yes” quite positively and I have to believe she understands what she’s saying.

I really don’t do myself any favours by being emotional whenever I’m there. But I can’t help but miss her.

Peter 663804D9-3B09-4019-B289-75E1038A45B7.jpeg
 

Izzy

Volunteer Moderator
Aug 31, 2003
66,674
0
71
Dundee
Hello @Izzy
Thanks for that but I’m still in the dark.

Where do I find “old messages” and “show all”


I’m sorry, I’m out just now but I’ll have a ho at showing it with screen shots from my phone.

The top of my messages shows you post in which you tagged me. Underneath my last message I have the ‘show all’ option.
 

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Shedrech

Volunteer Moderator
Dec 15, 2012
12,147
0
Yorkshire
hi @Dutchman
at the very top right of each page there are 2 icons, an envelope and a bell

if you have an alert a number will appear

then click on the icon

then scroll to the bottom of the box to 'Show all' ... click on that

then open the top message or alert and read it

then use your 'go back' arrows (whatever you usually do to go back a page)

you'll be back at the list of messages/alerts and can read any others

if you then return to reading threads/posts and there is still a number, it means there is an unread message further back than you looked

with the Bell for alerts .... in each alert box there is a small blue circle at the bottom right .... if the alert hasn't been read, this circle will be filled in, so you can spot the one to scroll back

unread alerts/messages are also greyed to highlight them
 

Scarlet Lady

Registered User
Apr 6, 2021
213
0
hi, Peter. What a nice picture of Bridget! While it’s apparent the toll dementia has taken, you can still see the spirit of a strong independent woman shining through. She’s not completely lost to you.
 

slim-jim

Registered User
Sep 6, 2020
73
0
Don’t you just hate the adverts on tv where a family is so enjoying their new kitchen/ sofa/ car, looking forward to the forthcoming holiday where all are going to have such a wonderful time full of promise and happiness. I know it’s to sell products but we here know that grief sits waiting round the corner.

I, on the other hand, am dreading the enforced jollity around this time of year when I remember how it was. Bridget was the centre of our Christmas and all I can do this year is to be there at the home making her (and the staff) Christmas as happy as it can be.
Yes I agree it is almost cruel for both sufferers and carers. I for one just want Christmas to come and go as quickly as possible.I suspect there are many thousands like us.
 

update2020

Registered User
Jan 2, 2020
198
0
Just signing in to sign out. What a lovely picture of Bridget @Dutchman. Very unexpectedly my husband died and is now at peace after 16 years of growing torment. He was exactly 65.5 years (to the very day). Love to you all continuing with this life. I have no idea what comes next. xxx