FEELING LOST

Norrms

Registered User
Feb 19, 2009
5,631
0
Torquay Devon
LOST

Have you ever felt as if you are lost? I mean really lost? I don’t mean you have forgotten where you are going or what you were doing, or taken the wrong turn, but lost within yourself? I will try to explain…..


The last couple of days I have felt as if I am walking in an endless wilderness of despair and frustration. Some may say that`s depression and I am a firm believer that dementia and depression comes hand in hand anyway because when you are told you have a terminal disease? How can it not ? But this is so different. Lately my wife has said “Norrms” you look lost, are you ok?? When I ask what she means she says I have that look of bewilderment in my eyes as not sure what’s going on around me, or where I am or what I am doing and as much as I hate to admit it she is right . I can sit there and just stare into space, I can look around when out, and wonder where I am and what I am doing there. One of the most frightening things is, when I have flashbacks from the night before after having hallucinated most of the night, I can be sat the having a coffee in the middle of a cafe when suddenly I jump and scream as if the devil himself has shown up. I can only imagine what people think because I know i probably would if I didn’t know anything about dementia, and who can blame them??





The emptiness and loneliness that wells up inside is so debilitating and I wouldn’t wish it on anybody, your mind try’s to remember things gone past. I sit there and think “What did we do yesterday, or the day before? In my mind I am trying to keep my memories alive by recalling them as often as I can, training in brain not to forget, but sadly this is not always the case as I clench my hands in frustration because someday I cannot ever remember what I had for breakfast, let alone the day before!! When you have the most loving family ever around you and many friends both here and across the world it’s hard to believe that anybody can feel so lost but this illness of dementia affects so many in so many different ways, one size certainly does not fit all . It’s also hard to believe that when you see us all bouncing around, singing and laughing at our memory café that the same person can sit there, ever so lost, with the look of a little boy who has been separated from his parents in a supermarket on his face and tears running down his eyes.

This disease is ever so cruel in many different ways, it’s just not about losing your inhibitions or forgetting this and that it’s about feeling like you are becoming somebody else, somebody you don’t know or even like, a complete stranger, and I have to say it isn’t very nice as you can imagine. So please can I ask something of you all? the next time you see someone sitting there, looking completely lost, it may or may not be dementia, but I can assure you if you just have a word, ask how they are and if they are ok, it will probably at that moment in time, mean the world to them. Just to hear a friendly voice and knowing that someone has taken time out of their busy day to ask how you are can mean so very much
 

Libbybookworm

Registered User
Apr 6, 2018
135
0
LOST

Have you ever felt as if you are lost? I mean really lost? I don’t mean you have forgotten where you are going or what you were doing, or taken the wrong turn, but lost within yourself? I will try to explain…..


The last couple of days I have felt as if I am walking in an endless wilderness of despair and frustration. Some may say that`s depression and I am a firm believer that dementia and depression comes hand in hand anyway because when you are told you have a terminal disease? How can it not ? But this is so different. Lately my wife has said “Norrms” you look lost, are you ok?? When I ask what she means she says I have that look of bewilderment in my eyes as not sure what’s going on around me, or where I am or what I am doing and as much as I hate to admit it she is right . I can sit there and just stare into space, I can look around when out, and wonder where I am and what I am doing there. One of the most frightening things is, when I have flashbacks from the night before after having hallucinated most of the night, I can be sat the having a coffee in the middle of a cafe when suddenly I jump and scream as if the devil himself has shown up. I can only imagine what people think because I know i probably would if I didn’t know anything about dementia, and who can blame them??





The emptiness and loneliness that wells up inside is so debilitating and I wouldn’t wish it on anybody, your mind try’s to remember things gone past. I sit there and think “What did we do yesterday, or the day before? In my mind I am trying to keep my memories alive by recalling them as often as I can, training in brain not to forget, but sadly this is not always the case as I clench my hands in frustration because someday I cannot ever remember what I had for breakfast, let alone the day before!! When you have the most loving family ever around you and many friends both here and across the world it’s hard to believe that anybody can feel so lost but this illness of dementia affects so many in so many different ways, one size certainly does not fit all . It’s also hard to believe that when you see us all bouncing around, singing and laughing at our memory café that the same person can sit there, ever so lost, with the look of a little boy who has been separated from his parents in a supermarket on his face and tears running down his eyes.

This disease is ever so cruel in many different ways, it’s just not about losing your inhibitions or forgetting this and that it’s about feeling like you are becoming somebody else, somebody you don’t know or even like, a complete stranger, and I have to say it isn’t very nice as you can imagine. So please can I ask something of you all? the next time you see someone sitting there, looking completely lost, it may or may not be dementia, but I can assure you if you just have a word, ask how they are and if they are ok, it will probably at that moment in time, mean the world to them. Just to hear a friendly voice and knowing that someone has taken time out of their busy day to ask how you are can mean so very much
Thank you Norms. My husband has never spoken about the effects this ghastly illness has had on him. He never was a great raconteur, but became even less so as the disease progressed. You've given me some insight into what it must feel like for him. Bless you ?
 

Carmenjane

Registered User
Mar 17, 2022
457
0
I want to thank you too. Your analogy of a little boy lost in a supermarket is so insightful. I see that look in my OH's eyes and it makes me sad. All I can do is give him a cuddle but I know it's not as if his mum has found him and now everything will be ok.
 

DreamsAreReal

Registered User
Oct 17, 2015
476
0
Oh @Norrms ?. That is heartbreaking ? I wish everybody would read this, there's so little understanding of Dementia out there. Even amongst the professionals.
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
5,457
0
Thank you @Norrms Sometimes my husband has an expression of total confusion on his face and he will say that he feels lost for a while but then everything begins to make sense again. Your explanation really helps me to understand a little of what he is going through. Like you he has Lewy Body Dementia with all of the dreams etc that go with it.
 

Starting on a journey

Registered User
Jul 9, 2019
1,166
0
@Norrms , thank you for explaining what I have often thought of as my mums moments. I shall be extra considerate of her at those times now I know how she could be feeling.
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,248
0
High Peak
My parallel to the boy in the supermarket would be my mum in Marks & Sparks! You describe it so well @Norrms

I'd moved mum to a care home though she was still completely mobile and very articulate - at the stage where she could pass for OK in a short conversation. We took her out for lunch which she enjoyed then walked across to Marks so she could choose some choccies to take back with her. At first she was fine with me keeping an eye on her... then she got that bewildered look you mention. Instead of walking and looking at the shelves she just stopped in the middle of an aisle. I was a couple of yards away and went over - I could almost see the wheels turning in her brain, desperately trying to work out where she was, who she was, who was with her, why was she here? Etc, Etc. She was just completely lost in herself.

At that time I was able to bring her 'back' and we cut the outing short and took her back to the CH, though she remained confused and didn't know where she'd been.

All I can say @Norrms is that it was never a permanent state with mum, even a couple of years later. She was often confused or delusional but that completely 'lost' thing only seemed to happen occasionally. Thanks for posting - such a valuable insight.
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,363
0
Newcastle
Thanks @Norrms, hearing what it feels like first-hand is very enlightening and moving to those of us who can only (rather poorly) imagine.

@Jaded'n'faded M&S was exactly where the police found my wife when we got separated on crowded Northumberland Street one Christmas Eve.
 

Cariad 42

Registered User
Dec 18, 2018
40
0
Thank you so much for this. It exactly describes how my husband has been over the last couple of days. It's not happened before so I've been very concerned and not at all sure what to do for the best. Such helpful advice .
 

Maxxie

Registered User
Jul 21, 2022
12
0
Thank you @Norrms for the glimpse into what must be a very frightening and lonely world for you. My husband has Parkinson's Disease Dementia - the PD 14 years & dementia for over 4 1/2 years and has this faraway look so much these days. Sometimes when I speak to him, he stares at me like he's not sure who I am, how I've just eventuated, or where he is - just totally bewildered and wandering around aimlessly. He too has lots of hallucinations - mostly people and animals who live here with us - not scary ones thankfully.
It breaks my heart seeing him like this, but despite me asking, he never shares these feelings with me. I wish he would. I want him to know I want to be there with him so he's not alone.
It helps a lot to know firsthand how it feels and thank you so much for sharing.
Take care.
 

Sherma77

Registered User
Jul 20, 2021
16
0
78
Ohio
I see that Norrms is 8-5 and Maxxie's is 8-12. Now my personal imput: Norrms began days before, Maxxie's husband wasn't that soon, mine began 8-7. I believe it was caused by the super moon 8-11. Moon affects me way too often. By the 14th I recognized improvement! I checked and we had, had a super moon! Figured! I want to add that after full moon it is worse the 2 days after! I guess the buildup, the moon, and still affected. The dark of the moon can do the same thing to sundowners. Hope this helps. By marking possible problems to expect and prepare for, could help carers I would think. Which could help us with dementia.
 

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