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Dementia’s journey

Dutchman

Registered User
May 26, 2017
763
Devon
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
My daughter has upset me a bit. I’ve an invite from my granddaughter to a family dinner of people i know only briefly. I said i’ll see. My daughter is pushing and pressuring me to go.

She wants me to move on, get out of my so called comfort zone of what i do regularly and i’ve told her not to push me. My comfort zone is there as a defence against upset. Why do people want me to move on? Why can’t i do things at my own pace? Anticipatory grief takes its toll and people like us on the forum know only too well the privacy and loneliness of the upset
Thank kindred. Your always there with comforting comments

Peter
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,764
Kent
Quote @Dutchman
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.

I`m surprised the care home is allowed to post pictures of residents on Facebook without permission. I would not be happy about this.
 

Dutchman

Registered User
May 26, 2017
763
Devon
Quote @Dutchman
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.

I`m surprised the care home is allowed to post pictures of residents on Facebook without permission. I would not be happy about this.
This is a picture sent direct to me by the care home and i decided to post it myself on to Facebook.
 

Grahamstown

Registered User
Jan 12, 2018
1,710
80
East of England
Facebook can be very painful, especially the photos of the same day so many years ago. I had one yesterday from 8 years ago when life was normal and lovely but now... As Geraldine says, only on Talking Point can you let out those feelings of grief, pain and loss. And then try to carry on a life.
 

Hazara8

Registered User
Apr 6, 2015
507
My daughter has upset me a bit. I’ve an invite from my granddaughter to a family dinner of people i know only briefly. I said i’ll see. My daughter is pushing and pressuring me to go.

She wants me to move on, get out of my so called comfort zone of what i do regularly and i’ve told her not to push me. My comfort zone is there as a defence against upset. Why do people want me to move on? Why can’t i do things at my own pace? Anticipatory grief takes its toll and people like us on the forum know only too well the privacy and loneliness of the upset
Thank kindred. Your always there with comforting comments

Peter
May l respectfully say that other people's concept of the 'comfort zone' is inevitably flawed. Even with family members, however well intentioned. ' Snapping out of it's or 'Putting a brave face on it's and so on, has no meaning whatsoever. Only YOU know how you are feeling at any given time and in this dementia journey all the ' norms' which make up daily living and the feelings too, are governed by a raw and very challenging fact, which only you confront - not anyone else, nor the family. And as a codicil to this, when a photograph evokes either joy or sorrow, it is still simply that. A moment fixed in time recorded on paper and not the actual. Fixed in a moment in time. Memory is such. I am afraid that the depth of feelings which are brought into play during the dementia journey are innocently lost on those who are certainly well intentioned, as with family. Only you know those feelings which are unique to yourself. On here we can "share" those feelings on the basis of empathy and actual relationship with dementia in a loved one. And no pressure!

With good wishes.
 

kindred

Registered User
Apr 8, 2018
2,492
May l respectfully say that other people's concept of the 'comfort zone' is inevitably flawed. Even with family members, however well intentioned. ' Snapping out of it's or 'Putting a brave face on it's and so on, has no meaning whatsoever. Only YOU know how you are feeling at any given time and in this dementia journey all the ' norms' which make up daily living and the feelings too, are governed by a raw and very challenging fact, which only you confront - not anyone else, nor the family. And as a codicil to this, when a photograph evokes either joy or sorrow, it is still simply that. A moment fixed in time recorded on paper and not the actual. Fixed in a moment in time. Memory is such. I am afraid that the depth of feelings which are brought into play during the dementia journey are innocently lost on those who are certainly well intentioned, as with family. Only you know those feelings which are unique to yourself. On here we can "share" those feelings on the basis of empathy and actual relationship with dementia in a loved one. And no pressure!

With good wishes.
Hazara, bless you this is so true. I think the profundity of our slow loss is almost impossible for those without this situation to comprehend. Thank you. with love Geraldine
 

Hazara8

Registered User
Apr 6, 2015
507
Hazara, bless you this is so true. I think the profundity of our slow loss is almost impossible for those without this situation to comprehend. Thank you. with love Geraldine
Thank you, Geraldine. I think the beauty of all this, albeit evolving from sorrow and perhaps heartfelt despair, is a ' 'communication' the nature of which is such, that we really do understand clearly the facts and not just the simplistic rhetoric. Like a soldier in warfare can only truly relate to comrades in arms when speaking of conflict. They have lived it.

When you delve deeper something else happens. But that is another story!

My warmest wishes. J.
 

Cat27

Volunteer Moderator
Feb 27, 2015
11,601
Merseyside
My daughter has upset me a bit. I’ve an invite from my granddaughter to a family dinner of people i know only briefly. I said i’ll see. My daughter is pushing and pressuring me to go.

She wants me to move on, get out of my so called comfort zone of what i do regularly and i’ve told her not to push me. My comfort zone is there as a defence against upset. Why do people want me to move on? Why can’t i do things at my own pace? Anticipatory grief takes its toll and people like us on the forum know only too well the privacy and loneliness of the upset
Thank kindred. Your always there with comforting comments

Peter
As a daughter, I think your daughter is doing it out of love for you. She cares for you & wants you to have peace. She probably thinks you being around people who love you will help. It‘s good that you have that love & care around you.
 

kindred

Registered User
Apr 8, 2018
2,492
Thank you, Geraldine. I think the beauty of all this, albeit evolving from sorrow and perhaps heartfelt despair, is a ' 'communication' the nature of which is such, that we really do understand clearly the facts and not just the simplistic rhetoric. Like a soldier in warfare can only truly relate to comrades in arms when speaking of conflict. They have lived it.

When you delve deeper something else happens. But that is another story!

My warmest wishes. J.
Oh yes, you are so right. I have a beautiful card given to me at the nursing home where I volunteer and it calls me a soldier of great courage for volunteering most days through the peak of the crisis. I shall treasure that for ever. I was scared stiff, J, most of the time but I wanted to offer the residents activity and continuity at a time when they were isolated in their rooms and so many staff were off. Thank you for your gentle insights and wisdom. with love, G
 

Hazara8

Registered User
Apr 6, 2015
507
Oh yes, you are so right. I have a beautiful card given to me at the nursing home where I volunteer and it calls me a soldier of great courage for volunteering most days through the peak of the crisis. I shall treasure that for ever. I was scared stiff, J, most of the time but I wanted to offer the residents activity and continuity at a time when they were isolated in their rooms and so many staff were off. Thank you for your gentle insights and wisdom. with love, G
Volunteering in the world of dementia is enhancing for all the reasons you will know about. To continue despite the threat of this unremitting virus confirms not just the essential unselfish essence of Care, but obvious humanity in practice and not just theory. The card acknowledges that. The residents are the beneficiaries. You epitomize the gold standard of Care and in dementia especially, that is no easy ride.
Bless you.
 

Dutchman

Registered User
May 26, 2017
763
Devon
Hi everyone.

Life carries on. i go to see Bridget 3 times a week now as she doesn’t really know who i am just recognises me as someone special so i’ll have to make do with that. What else can i do? There’s no way I can change the situation or influence any changes that would make me feel better.
Ive always got great comfort and support here on the forum. It’s been invaluable. Its only when i’m on my own needing direct support, right then , do i feel that it’s really down to me to carry on as best i can.

And it’s at odd times it hits you. I came back from the shops today and, in pre dementia times, Bridget would have come round that corner to meet me, arms outstretched, big smile, and i knew i was loved. I miss that so much. To be loved and now just me to do my shopping. It hit me me and I struggled to hold back tears as i walked home.

I guess it gets easier.

God bless
Peter
 

Grahamstown

Registered User
Jan 12, 2018
1,710
80
East of England
I don’t think it gets easier, just more chronic than acute sorrow. I visited a lovely couple for coffee this morning, he a colleague of my husband’s and she a friend because of that. I felt it deeply, because that used to be us and they are still that loving couple, proud of their long marriage and companionable together. I thought about it as I walked home, alone, not virtually like you, but actually. Take comfort from your three visits a week, thankful for small mercies even though you mourn for what was. Nothing is easy and it’s as if we are particularly burdened when we are least strong to bear it ourselves. You are keeping going and doing your best for your wife even if she is oblivious to it, and that’s all anyone can do - Sue xx
 

Izzy

Volunteer Moderator
Aug 31, 2003
62,792
69
Dundee
@Grahamstown - you describe how I often feel. I'm the only one of my circle of friends (other than those I've met through dementia) who has lost their spouse. I'm so happy for them that they have their time together and they are so kind to still include me in what they do but that doesn't make it any easier walking home by myself and going into an empty house.

@Dutchman I can only echo Sue's thoughts.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,764
Kent
Reading Sue @Grahamstown `s and @Izzy `s posts made me realise I don`t socialise with any couples of my generation.

We relocated while Dhiren was having difficulties which led to his diagnosis. During this time it was impossible to join the groups we`d planned to join to meet new friends.

Since I`ve been by myself, the new friends I`ve made have all been single, either widowed or separated and so I`m somehow protected.

The adjustments to single living will never be easy , especially following a long and loving relationship.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,246
Yorkshire
Maybe your daughter, and granddaughter, each miss you and hoped you would go to that occasion so they could spend some time with you … sadly, your daughter cannot visit her mother and that can't be easy on her … she may simply be seeking ways to have some of her family together
 

Banjomansmate

Registered User
Jan 13, 2019
2,092
Dorset
This is why I have been so grateful that I have had my dogs, first after my husband died and now that The Banjoman has gone from my life too. People say what a tie they are but I haven’t had to come home to an empty house!
They have also been a Godsend during the lockdown, I’ve had something to talk to, take out for a walk every day and give a big cuddle to. My family came to visit at a distance the other day and I was so close to giving my youngest grandson a hug and kissing the top of his head!
 

Grahamstown

Registered User
Jan 12, 2018
1,710
80
East of England
Reading your post @Grannie G made me realise that I have been reluctant to see the couples who were our close friends, especially when he was ill and they visited regularly. There has been a sea change in the attitude of those couples and I wonder if it’s because I remind them of what is to come for them. Single visitors, even if married, are different, they relate to me as an individual not as part of a couple. The couple whom I visited were not of that group but the wife particularly seemed anxious to get together. We too moved before the illness took hold and the people who live around me here all knew him when he was ill, not as he was. They are younger, single in many cases and we have all supported each other through the past four months and they were very supportive while I was caring for him in the last few months. So my attitude has changed and I do find the company of other couples painful at times, as a symbol of what I have lost. I prefer my own company now, plus a few close old friends. It’s all part of the process of readjusting to a new life I guess.
 

Grahamstown

Registered User
Jan 12, 2018
1,710
80
East of England
I would dearly love to have another dog, we have had them in the past, but it’s not the time to take on a dog for me. You are very fortunate @Banjomansmate to have had them, especially over the past few months. Maybe sometime... it’s early days for me really.
 

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