• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Who am I ....

Irishgirl57

Registered User
Jan 21, 2014
189
62
Florida, USA
I don't recognize myself at the moment, what a strange thing. I was always so positive glass is half... full sunshine on a cloudy day. I'm the one who,helped others see the light. I guess I was too busy in life -my kids, 3 jobs, my community work. Then add friends in there. Very busy but happy life

When I got diagnosed I made my world a lot smaller, constant interaction was noise. You could be one person ... it could be three people, it could be a roomful of people and all I heard was noise. Tv .. Radio... Noice! I did get a little better with this for a while through medication and working really hard to live my new normal.

I have shared that I am not in a very good place these days, for many reasons, which I'm being told really doesn't matter. That frustrates me lol That's what the counselor said, I'm getting caught up in people and things that don't matter in the end ... Matter to whom I don't know, but I guess I'm not going to find my way out of this any other way unless I let go .....

I'm trying to stay positive, my husband said to me yesterday "you have not said one positive thing all day" I'm sure he is right, but It doesn't help to be reminded, it made me feel worse ... I couldn't sleep last night ...all I kept thinking about is where it all went. Everyone around me misses the old me, they don't think that I don't miss that person more than they do? I'm tired of saying I'm sorry! I'm sorry I'm negative ..., Im sorry I snapped at you or said the wrong thing, if I'm sorry I don't want to socialize... I'm sorry that I don't have three jobs ...and I can bring in more income coming to the house, I'm sorry I'm sorry I'm sorry

Ok, I vented... Thank you for listening, time to let go... Light my favorite candle, Meditation and prayer up next .. Then move a muscle and change a thought
 

fizzie

Registered User
Jul 20, 2011
2,730
Hi Donna
Your posts are really valuable to me. Our lives have been similar, all that busy-ness, all the worry about others, always being involved and I've often wondered how I would feel if this beastly illness took me over unexpectedly as it did with you and many others. Your insights help me to understand what it would be or inded may be like and for that I thank you from the bottom of my heart xxx

I would like to be able to help you and make you feel better but I can't do that and can only say to you, please keep sharing - everything you post is valuable xxxx
 

Sue J

Registered User
Dec 9, 2009
8,035
Hi Donna

When I read your post I thought of Norms latest thread, 'Why do I have to apologize for having dementia?' You shouldn't have to apologise for no longer being able to do the things that you were once able, of course you would do them if you still were but evidently you are not because things have changed.

I cared for my Mother in the best way I could, no TP in those days and until I became afflicted I realised how little comprehension I had of how she suffered and was always distressed by her suffering but what I did know was that she couldn't help it. If she were here today it would be me saying sorry to her for not understanding more just how difficult her life was. I wouldn't wish these symptoms on my worst enemy it is the symptoms of the disease that are negative, not me and from what you write I don't think you are 'negative' either but likely having a bad day.

All the very best to you
Sue:)
 

Irishgirl57

Registered User
Jan 21, 2014
189
62
Florida, USA
Hi Donna
Your posts are really valuable to me. Our lives have been similar, all that busy-ness, all the worry about others, always being involved and I've often wondered how I would feel if this beastly illness took me over unexpectedly as it did with you and many others. Your insights help me to understand what it would be or inded may be like and for that I thank you from the bottom of my heart xxx

I would like to be able to help you and make you feel better but I can't do that and can only say to you, please keep sharing - everything you post is valuable xxxx
Thank you so much for your support... This too shall pass, I know that in my heart.
 

Irishgirl57

Registered User
Jan 21, 2014
189
62
Florida, USA
Hi Donna

When I read your post I thought of Norms latest thread, 'Why do I have to apologize for having dementia?' You shouldn't have to apologise for no longer being able to do the things that you were once able, of course you would do them if you still were but evidently you are not because things have changed.

I cared for my Mother in the best way I could, no TP in those days and until I became afflicted I realised how little comprehension I had of how she suffered and was always distressed by her suffering but what I did know was that she couldn't help it. If she were here today it would be me saying sorry to her for not understanding more just how difficult her life was. I wouldn't wish these symptoms on my worst enemy it is the symptoms of the disease that are negative, not me and from what you write I don't think you are 'negative' either but likely having a bad day.

All the very best to you
Sue:)
Thank you sue... I had no TP my first few years, and did come to the same conclusion. I don't have to apologize to people for my dementia because I am not responsible, but I am accountable for being mean or hurting someone. I have to keep my side of the street clean and I am not a victim. I am having a bad few weeks... And I truly appreciate your words ....
 

Sue J

Registered User
Dec 9, 2009
8,035
No. Who hurts others is dementia. Not you.
I agree with BR_ANA Donna, I am sure you have not hurt someone deliberately or been mean deliberately. Maybe others that have been hurt by some of your behaviours need to try and find out a bit more about dementia and how you are suffering. You can't berate yourself and neither can anyone else berate or hold you accountable for something that is out of your control.

Please be kind to yourself.:)xxx
 

Irishgirl57

Registered User
Jan 21, 2014
189
62
Florida, USA
I agree with BR_ANA Donna, I am sure you have not hurt someone deliberately or been mean deliberately. Maybe others that have been hurt by some of your behaviours need to try and find out a bit more about dementia and how you are suffering. You can't berate yourself and neither can anyone else berate or hold you accountable for something that is out of your control.

Please be kind to yourself.:)xxx
I feel so out of control sometimes.... Like I'm backed into a corner and I come out fighting verbally.... My brain gets all jumbled up. I am aware of my dementia, I sometimes wish I wasn't so aware, but this is the way it is for me. I do,agree that my family needs to be better educated because this is a family disease. Thank you for all you care .. I really appreciate it
 

Sue J

Registered User
Dec 9, 2009
8,035
I feel so out of control sometimes.... Like I'm backed into a corner and I come out fighting verbally.... My brain gets all jumbled up. I am aware of my dementia, I sometimes wish I wasn't so aware, but this is the way it is for me. I do,agree that my family needs to be better educated because this is a family disease. Thank you for all you care .. I really appreciate it
I know exactly what you mean Donna, I am aware of my symptoms too and like you wish I wasn't - and somehow because I am aware, I sometimes make the mistake that others do that it is my fault or I should be able to control my behaviours both of which are lies - others find the change in my personality difficult but not half as much as I do:(

However, having awareness I try to use that awareness to let others know what it is like and how they can perhaps help me to cope with particular things. I have a cycle to my symptoms and it has helped me to use a calendar to map out my good and bad days, its a bit ad hoc but it means that I can 'predict' a little how I may be and know that during a bad phase I know that a good phase will follow. If you are not able to do this maybe your family good do it and together you can 'see' any pattern.

Your family could join TP too.

Hoping your bad few weeks soon passes and tomorrow is better than today:)xx
 

Irishgirl57

Registered User
Jan 21, 2014
189
62
Florida, USA
I know exactly what you mean Donna, I am aware of my symptoms too and like you wish I wasn't - and somehow because I am aware, I sometimes make the mistake that others do that it is my fault or I should be able to control my behaviours both of which are lies - others find the change in my personality difficult but not half as much as I do:(

However, having awareness I try to use that awareness to let others know what it is like and how they can perhaps help me to cope with particular things. I have a cycle to my symptoms and it has helped me to use a calendar to map out my good and bad days, its a bit ad hoc but it means that I can 'predict' a little how I may be and know that during a bad phase I know that a good phase will follow. If you are not able to do this maybe your family good do it and together you can 'see' any pattern.

Your family could join TP too.

Hoping your bad few weeks soon passes and tomorrow is better than today:)xx
Thanks sue. I appreciate your response. I never thought to track my bad times. I do know that when I socialize to much, I need rest. Interesting, and I will look into it. Right now my family is in the midst of a lot of change in the dynamics which I guess would lead to more change then I'm used to. Also, I'm going in for surgery in 2 weeks... It has all hit at a time when I'm not top of my game... But this too shall,pass and I so appreciate the positive feedback
 

Amy

Registered User
Jan 4, 2006
3,453
irishgirl 57, thank you so much for your valuable insight into 'noise'...it helps me to understand my loved one better. Sarah, the staircase is wonderful...looking at the whole thing is too daunting at present...one step at a time. Thank you both x