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What does the person with dementia feel.

Gwyneth

Registered User
Nov 25, 2015
48
My Dad was diagnosed 4 years ago.
He is 75 and as healthy as a horse.
Very active his entire life and has been the light of my son's life since he's been form.

But the past few months I have noticed his train of thought is always interrupted, he cannot find the words for common items etc.

I wonder what he feels.

Is he mad at the world, scared, does he know what is to come?

Should I ask him and talk to him about the disease or would that be like rubbing salt into the wound? :mad:

I am so mad at this dreadful degrading disease.
To take a healthy active man and turn him into a dependant aging person is just so unfair and so difficult to watch happen.
You would think at this day and age there would be a cure or at least better meds available to stop the progression better than there are now.

Sorry I need to vent. I am just so angry.
Don't we all. So tragic to watch. Feel for you and know what it is like. Gwyneth
 

john51

Registered User
Apr 26, 2014
289
Dunstable, Bedfordshire
For me there are good days and bad days. The most difficult thing for those around me is that at the time I don't know I'm having a bad spell; then the fog in my mind clears and it all becomes so clear to me.
John
 

chick1962

Registered User
Apr 3, 2014
11,282
near Folkestone
For me there are good days and bad days. The most difficult thing for those around me is that at the time I don't know I'm having a bad spell; then the fog in my mind clears and it all becomes so clear to me.
John
That's the same with my John , thank you for sharing


Sent from my iPhone using Talking Point
 

deannabyrne

Registered User
Jan 11, 2016
2
Thanks all

A follow up question.
I have heard my dad say he has the word in his mind but cannot say the word.
If others on this thread have the same issue can he write it down on paper versus saying the word?
 

dawning

Registered User
Jan 15, 2016
10
It makes me cry to read and imagine how people with dementia or their carers feel everyday. I remember days when my father was still here. Sometimes I can be angry, but sometimes I just can cry remembering days when he was very active and creative, before this disease comes to him. It's so sad, lads. :(
 

aprilbday

Registered User
Jan 27, 2016
329
Washington, DC USA
For me, I feel shattered. At first when I could not remember my address, I was scared. Then, when I would say "good morning" to the same people (they get annoyed and tell me I've already said 'good morning), I would feel ashamed.
When I wear my clothes the wrong way, I fill humiliated. When I can't connect "if and then logic" scenarios I feel alarmed. When I look at my students faces and can not remember their names, I feel inept. When I am home alone in my bed, I feel at peace and safe but worry about next year and the next year and how long I can work and live in my apartment. When I am at the store I feel like it's too big and I am too small (and there is nothing small about me).
When I try to watch tv or movies, I lose track and interest. When I cook, I have to sit because it takes too long now.
I feel happy when I get responses on TP.
 

creativesarah

Registered User
Apr 22, 2010
9,478
East Hunsbury Northamptonshire
For me, I feel shattered. At first when I could not remember my address, I was scared. Then, when I would say "good morning" to the same people (they get annoyed and tell me I've already said 'good morning), I would feel ashamed.
When I wear my clothes the wrong way, I fill humiliated. When I can't connect "if and then logic" scenarios I feel alarmed. When I look at my students faces and can not remember their names, I feel inept. When I am home alone in my bed, I feel at peace and safe but worry about next year and the next year and how long I can work and live in my apartment. When I am at the store I feel like it's too big and I am too small (and there is nothing small about me).
When I try to watch tv or movies, I lose track and interest. When I cook, I have to sit because it takes too long now.
I feel happy when I get responses on TP.
Thanks for sharing with us.
Today I got very confused but people don't always understand
I got stressed and took ages doing a simple thing that someone else could probably have done in minutes
Later on I couldnt work out how to put my thermal leggings and on my walk I got confused
I enjoyed my walk thjough and took some nice sunset photos
I seemed to struggle to understand what people were saying to me
and now I am eating some chocolate raisins which isnt good for my diet

Thankfully tomorrow is another day
 

The Chewtor

Registered User
Feb 6, 2016
295
64
Gillingham, Kent
just like John for me once a word is gone it stays gone probably for the rest of that day. like April TV often frustrates me especially programmes that say 'more on that later', by the tim e they come back i have no idea what they are on about. my main issues seem to be words going missing during talking, words being randomly replaced when writing, getting the unspoken meaning of some verbal comments and particularly if i am not 100% i may have to read a papragraph 10+ times to 'get' it. i usually give up way before then.

just writing and then trying to read back this short piece has shattered me so i cannot be bothered to go and correct it. tough!

how on earth do you write stories Sarah??

wayne

ps i also get mad when i suddenly cannot do something i just did 5 minutes ago
 

heaven* help*us

Registered User
Feb 6, 2016
37
London , Uk
Thank you all for this post. It has really helped me understand my partner. Today the whole day was a very foggy day for him. I asked him to try & explain it. One of you basically rephrased it. Also he gets easily confused with tv programs as well. I didn't realise that was part of his illness and subsequent frustration.
I always light a candle with you and my partner in mind. I will send up a prayer for you all as well. My heartfelt thanks to you all ♡
 

Olivia15

Registered User
Feb 24, 2016
38
Thanks for sharing all of this - my mum's had Alzheimer's for the past 5 years and I used to ask her what it was like for her and she used to talk about feeling foggy a lot. Some of the posts on this thread have been really informative and help me see where she was coming from more in the past :)
 

The Chewtor

Registered User
Feb 6, 2016
295
64
Gillingham, Kent
What's going on inside

in a very clear moment while out enjoying a walk yesterday, I came up with words that seem to me to sum up what some of the frustration may be. I look out of my eyes and see what I perceive as being the old me, the real me, the capable me. others see the me now, older, with dementia and often struggling. because I cannot accept there is a different me, I get really angry that I cannot do what I think/know I should be able to do. blaming some invisible disease is not an option inside me.

now that I see this jumble of words today, I wish that I could have back the clear moment from yesterday when I am sure it made better sense. maybe yesterday was the illusion and non of it ever makes any sense :D

wayne
 

LoisJean

Registered User
Jan 11, 2016
94
72
Northeast Lower Michigan, USA
in a very clear moment while out enjoying a walk yesterday, I came up with words that seem to me to sum up what some of the frustration may be. I look out of my eyes and see what I perceive as being the old me, the real me, the capable me. others see the me now, older, with dementia and often struggling. because I cannot accept there is a different me,
I get really angry that I cannot do what I think/know I should be able to do. blaming some invisible disease is not an option inside me.
now that I see this jumble of words today, I wish that I could have back the clear moment from yesterday when I am sure it made better sense. maybe yesterday was the illusion and non of it ever makes any sense :D
wayne
You make crystal clear sense to me, Chewtor. You are a comfort for me. My relief is immense when I can read these words of yours and say, "I understand that".
Peace-- LoisJean
 

Emac

Registered User
Mar 2, 2013
186
Some days I feel as though things are slowly slipping out of my grasp
other days I feel fairly OK
Some days my head feels as though I am wading through liquid concrete
other days like strolling through ready brek!

I read the book Still Alice and found that really helpful I felt less frightened

Also Elizabeth is missing is a great insight too

No 2 dementia sufferers are alike.

You could try asking him how it feels I didnt mind being asked but he may or maynot be pleased!
Hi Creative Sarah. Thank you so much for sharing. it is so helpful for everyone. I hope it helps you too. Sometimes my Mum says, I feel like I'm losing my life (which makes me want to cry!) We never talk about alzheimers though- only 'memory problems'.